[Federal Register: April 10, 2008 (Volume 73, Number 70)]
[Proposed Rules]
[Page 19707-19741]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr10ap08-15]
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Part III
Department of Health and Human Services
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45 CFR Parts 1385, 1386, 1387, and 1388
Developmental Disabilities Program; Proposed Rule
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DEPARTMENT OF HEALTH AND HUMAN SERVICES
45 CFR Parts 1385, 1386, 1387, and 1388
RIN 0970-AB11
Developmental Disabilities Program
AGENCY: Administration on Developmental Disabilities, Administration
for Children and Families, HHS.
ACTION: Notice of proposed rulemaking (NPRM).
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SUMMARY: This rule proposes clarifications and new requirements to
implement the Developmental Disabilities Assistance and Bill of Rights
Act of 2000 (DD Act of 2000). Of particular note, the proposed rule
covers responsibilities of the Secretary in the area of program
accountability and the indicators of progress. Under the proposal, one
or more measures of progress must be used to measure the goal(s)
developed for each area of emphasis. The areas of emphasis include: (1)
Quality assurance activities; (2) education activities and early
intervention activities; (3) child care-related activities; (4) health-
related activities; (5) employment-related activities; (6) housing-
related activities; (7) transportation-related activities; (8)
recreation-related activities; and (9) other services available or
offered to individuals in a community, including formal and informal
community supports that affect their qualify of life.
DATES: Comments will be accepted through June 9, 2008.
ADDRESSES: Interested persons are invited to submit comments regarding
this proposed rule to: Commissioner, Administration on Developmental
Disabilities, Administration for Children and Families, 370 L'Enfant
Promenade SW., Mail Stop: HHH 405D, Washington, DC 20447. Persons may
also transmit comments electronically via the Internet at: http://
www.regulations.acf.hhs.gov. Electronic comments must include the full
name, address, and organizational affiliation (if any) of the
commenter. All comments and letters will be available for public
inspection, Monday through Friday 7 a.m. to 4 p.m., at the address
above, by calling (202) 690-5841 to set up an appointment and gain
entry to the building. Electronically-submitted comments will be
available for viewing immediately. To download an electronic version of
the rule, you should access ACF's regulation page at: http://
www.regulations.acf.hhs.gov or www.regulations.gov.
FOR FURTHER INFORMATION CONTACT: Elsbeth Porter Wyatt, Administration
on Developmental Disabilities, telephone (202) 690-5841 (Voice). The
TDD telephone number for the Administration on Developmental
Disabilities is (202) 690-6415. These are not toll-free numbers. This
document will be made available in alternative formats upon request.
SUPPLEMENTARY INFORMATION:
I. Developmental Disabilities Assistance and Bill of Rights Act of 2000
In 1963 the President signed into law the Mental Retardation
Facilities and Construction Act (Pub. L. 88-164). It gave the authority
to plan activities and construct facilities to provide services to
persons with mental retardation. This legislation was significantly
amended a number of times since 1963 and most recently by the
Developmental Disabilities Assistance and Bill of Rights Act of 2000,
Public Law 106-402 (the DD Act of 2000). The DD Act of 2000 directs the
Secretary of Health and Human Services to implement an accountability
process to monitor the grantees that receive funds under the Act
(Section 104(a)(3), 42 U.S.C. 15004(a)(3)). The process is to identify
and report on progress achieved through advocacy, capacity building,
and systemic change activities. Indicators of progress are to be
developed for each area of emphasis and each entity receiving funds is
required to meet these indicators of progress. A report to the
President, Congress, and the National Council on Disability must be
prepared using information on grantee progress with regard to these
indicators every two years. Activities that focus on coordination and
collaboration within and across the programs must be included in the
report.
The accountability system and the new reporting requirements form
the substantive basis of this proposed rule. In addition, the proposed
rule addresses the following changes made by the DD Act:
The DD Act of 2000 also requires State Councils to set-
aside 70 percent of the Federal funds for activities tied to Council
goals (Section 124(c)(5)(B)(i)). The previous amount was 65 percent.
Also, the DD Act of 2000 increases the percentage from 50 percent to 60
percent of representation by individuals with developmental
disabilities on Councils (Section 125(b)(1)(C)(3)).
The DD Act of 2000 also requires that a Protection and
Advocacy (P&A) governing board be selected by the P&A and be subject to
the policies and procedures the P&A chooses to establish. The
membership of the board is now subject to term limits set by the P&A to
ensure rotating membership. The DD Act of 2000 strengthens provisions
regarding access to service providers and records of individuals with
developmental disabilities in order to investigate potential abuse and
neglect. Also, the State must now provide information to a P&A about
the adequacy of health care and other services, supports, and other
assistance that individuals with developmental disabilities receive
through home and community-based waivers.
Additionally, under the Act, the University Affiliated
Programs are renamed University Centers for Excellence in Developmental
Disabilities Education, Research, and Service (referred to as UCEDDs).
Each UCEDD receives a core award. When appropriations are sufficient to
provide at least $500,000, as adjusted for inflation, in funding to
each existing UCEDD, ADD is required to award grants for national
training initiatives and is authorized to create additional UCEDDs or
to make additional grants to existing UCEDDs. New UCEDDS created under
this authority or additional grants to existing UCEDDs would be in
States or for populations that are unserved or underserved due to such
factors as population, a high concentration of rural or urban areas or
a high concentration of unserved or underserved populations (Section
152(d)).
Finally, the DD Act of 2000 authorizes Federal interagency
initiatives to carry out projects relating to the development of
policies that reinforce and promote the self-determination,
independence, productivity, and inclusion in community life of
individuals with developmental disabilities through the Projects of
National Significance program.
While not the subject of this proposed rule, the DD Act of 2000
also established two additional program authorities, title II--Families
of Children with Disabilities Support Act of 2000, and title III--
Program for Direct Support Workers Who Assist Individuals with
Developmental Disabilities.
II. Grantees of the Administration on Developmental Disabilities (ADD)
Network Under the Act
A. Protection and Advocacy of Individual Rights
Formula grants are made to each State and other eligible
jurisdictions for the establishment of a system to protect and advocate
for the rights of individuals with developmental disabilities (P&As).
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The system must have the authority to pursue legal, administrative, and
other appropriate remedies or approaches to ensure the protection,
advocacy and rights of individuals with developmental disabilities who
are or who may be eligible for treatment, services, or habilitation, or
who are being considered for a change in living arrangement, with
particular attention to members of ethnic and racial minority groups.
The system must provide information and referral for programs and
services addressing the needs of individuals with developmental
disabilities, and have the authority to investigate incidents of abuse
and neglect of individuals with developmental disabilities if the
incidents are reported to the system, or if there is probable cause to
believe that the incidents occurred.
B. Federal Assistance to State Councils on Developmental Disabilities
Formula grants are made to each State and other eligible
jurisdictions to support a State Council on Developmental Disabilities
to engage in advocacy, capacity building, and systemic change
activities that assure that individuals with developmental disabilities
and their families participate in service and program design, and have
access to needed community services. Formula grants provide
individualized supports, and other forms of assistance that promote
self-determination, independence, productivity, and integration and
inclusion in all facets of community life through culturally competent
programs. Activities contribute to a coordinated, consumer and family-
centered, consumer and family-directed, comprehensive system that
includes needed community services, individualized supports, and other
forms of assistance that promote self-determination for individuals
with developmental disabilities and their families.
C. Projects of National Significance
Under subtitle E of title I of the Act, ADD may award grants,
contracts or cooperative agreements for Projects of National
Significance (PNS) to enhance the independence, productivity, and
inclusion of individuals with developmental disabilities. Generally,
projects are to promote promising practices, demonstrate innovative
approaches, provide technical assistance, collect data, educate
policymakers, disseminate information, and expand opportunities for
individuals with disabilities to participate in decision making and
community life.
D. National Network of University Centers for Excellence in
Developmental Disabilities Education, Research, and Service (UCEDDs).
[Formerly University Affiliated Programs/UAP]
In order to provide leadership, advise Federal, State, and
community policymakers, and promote self-determination, independence,
productivity, and full integration of individuals with developmental
disabilities, grants are awarded to entities designated as Centers in
the States and other eligible jurisdictions. The Centers are
interdisciplinary education, research, and public service units of
universities or public or not-for-profit entities associated with the
universities that engage in the core functions of interdisciplinary
pre-service preparation and continuing education of students and
fellows, provision of community services, conduct of research, and
dissemination of information related to activities undertaken to
address the purpose of title I of the Act.
III. Discussion of NPRM
This proposed regulation addresses the requirements of the DD Act
of 2000 and reflects input from the grantees of the ADD network (State
Councils on Developmental Disabilities, P&As, UCEDDs, and the national
organizations that represent them: The National Association of
Developmental Disability Councils (NADDC), the National Association of
Protection and Advocacy Systems (NAPAS), and the Association of
University Centers on Disabilities (AUCD)).
Key proposed provisions are as follows:
(a) The Definitions section (Sec. 1385.3) of the regulations has
been updated to reflect terms defined in the statute that apply to all
of the programs authorized by the DD Act of 2000;
(b) Section 1385.5 of the regulations has been added to address
program accountability and indicators of progress requirements for the
State Councils on Developmental Disabilities, P&As and UCEDDs as added
by Section 104(a) of the DD Act of 2000;
(c) Current section 1386.22 of the regulations addresses access to
records, facilities and individuals with developmental disabilities. We
propose to move and revise this section to establish these regulations
as a separate subpart C for the Protection and Advocacy Program;
(d) Section 1388.5 of the regulations addresses the five-year plan
and reporting requirements for UCEDDs. This section proposes a new
Annual Report for UCEDDs to meet the requirements of the Act (42 U.S.C.
15064).
Technical and conforming changes to other sections of the rules for
the DD Act programs have been made to address new terminology and
revised statutory cites and to provide clarity. For ease of public
understanding and comment, we have republished the regulatory text of
all provisions of 45 CFR Chapter XIII, Subchapter I, The Administration
on Developmental Disabilities, Developmental Disabilities Program in
full.
In developing this proposed regulation ADD examined many issues
tied to the legislation and the administration of the programs funded
under the DD Act.
One issue for which we specifically seek public comment is whether
the current process involving class action lawsuits provides adequate
protection for individuals with developmental disabilities. For
example, in order to include an individual as a member of a class what
criteria should be applied or clearance process should be followed?
Informed consent is a cornerstone of class action lawsuits to protect
the rights of individuals who may choose to be or not to be members of
a potential class. When an individual has a developmental disability a
guardian may have a role in that decision. State laws vary greatly with
regard to the roles and authority of guardians. What happens when there
is a difference of opinion between the individual and guardian on
whether to be a member of a class action lawsuit? It would be very
helpful to receive comments on the procedures used to reach decisions
on whether to pursue class action lawsuits and the method of informing/
obtaining consent. We will carefully consider all comments provided to
determine whether any changes are warranted in the final regulations to
ensure adequate protection of individual choice.
Another issue is the question of which activities grantees may
engage in to influence legislation and still be in compliance with
statutes, regulations and OMB Circulars which generally restrict such
activities and other activities ordinarily referred to as ``lobbying.''
The questions arise because State Councils, Protection and Advocacy
agencies (P&As), University Centers for Excellence and Projects of
National Significance are authorized under the provisions of the DD
Act, to ``educate,'' ``advise'' or ``inform'' Federal, State and local
policymakers. Sections 125(a)(5)(J), 143(a)(2)(L), 153(a)(1), and
161(2)(D)(iii). The ``policymakers'' referred to in the statute
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include members of Congress, officials of the Federal executive branch,
Governors, members of State legislatures and staff of State agencies.
Congress customarily has included in the annual appropriations acts
for HHS language restricting the use of appropriated funds to influence
legislation. See, e.g., Section 503 of Public Law 209-149.
Additionally, all projects funded by ADD, including those projects
funded for the purpose of informing, educating or advising
policymakers, are subject to restrictions on the use of Federal funds
for lobbying purposes. Non-profit organizations receiving ADD awards
are subject to the requirements of OMB Circular A-122, Attachment B,
Paragraph 25, pertaining to lobbying.
A section-by-section discussion of the significant changes made by
this proposed regulation follows:
PART 1385--REQUIREMENTS APPLICABLE TO THE DEVELOPMENTAL DISABILITIES
PROGRAMS
Section 1385.1 General
Section 1385.1 General, covers administrative requirements for the
ADD Network grantees. We are proposing to amend Sec. 1385.1 of this
part by revising the introductory text to include a reference to
section 1385.5 Program Accountability and Indicators of Progress.
Paragraph (a) is proposed to be amended to update the name of the State
Developmental Disabilities Councils to State Councils on Developmental
Disabilities. Similarly, paragraph (b) is proposed to be amended to
update the reference from Protection and Advocacy of the Rights of
Individuals with Developmental Disabilities to Protection and Advocacy
of Individual Rights. Paragraph (d) is proposed to be amended to update
the reference from University Affiliated Programs to National Network
of University Centers for Excellence in Developmental Disabilities
Education, Research, and Service. These changes are proposed to conform
the regulations with the language of the DD Act of 2000.
Section 1385.2 Purpose of the Regulation
This section of the NPRM proposes to update the statutory reference
to reflect enactment of the Developmental Disabilities Assistance and
Bill of Rights Act of 2000.
Section 1385.3 Definitions
This section of the NPRM updates terminology and definitions
resulting from enactment of the Developmental Disabilities Assistance
and Bill of Rights Act of 2000 and other necessary updates.
Section 1385.4 Rights of Individuals With Developmental Disabilities
We are proposing to amend paragraph (a) to update the statutory
citations. Section 109 of the Act is only applicable to State Councils
on Developmental Disabilities. Additionally, the DD Act of 2000
repealed the requirement that Councils, UAPs and Projects of National
Significance provide assurances of compliance with Section 110 of the
Act.
Similarly, we are proposing to amend paragraph (b) to update
statutory and U.S. Code citations for this requirement of the Councils
and the submission of the State plan.
We are proposing to amend paragraph (c). The PNS reference is being
deleted as the Act no longer contains this provision or a comparable
requirement. The UAP reference is proposed to be updated to refer to
UCEDD and the application's assurance of compliance cite is being
changed to Section 101(c) of the Act as provided in Section
154(a)(3)(D) of the Act of 2000.
Section 1385.5 Program Accountability and Indicators of Progress
We propose to add under section 1385.5, previously reserved, the
Program Accountability and Indicators of Progress requirements for ADD
grantees.
The DD Act of 2000 requires that: (1) There be indicators of
progress for each area of emphasis; (2) the indicators of progress be
used by the Secretary and grantees to describe and measure at a minimum
progress in advocacy, capacity building, and systemic change activities
by satisfaction, collaboration, and improvement; (3) the indicators of
progress be complied by grantees; (4) the indicators of progress result
in information which can be included in the Secretary's report to
Congress; and (5) the Secretary have a monitoring process for
establishing program accountability that incorporates the indicators of
progress.
As proposed in section 1385.3, the areas of emphasis under the DD
Act include: quality assurance activities; education activities and
early intervention activities; child care-related activities; health-
related activities; employment-related activities; housing-related
activities; transportation-related activities; recreation-related
activities; and other services available or offered to individuals in a
community, including formal and informal community support that affect
their quality of life.
The NPRM establishes the requirements for State Councils, P&As, and
UCEDDs to identify, characterize, and track progress on grant goals.
Each goal must be related to an area of emphasis. First, a grantee must
select a goal or goals for the year in question. Second, a grantee must
select a type of activity--advocacy, capacity building, or systemic
change--through which each goal shall be undertaken. Third, a grantee
must track progress on each goal by establishing measures of progress.
The measures of progress must describe and measure: (1) Consumer
satisfaction with the services provided through the activities of the
grantee under its ADD funded program; (2) collaboration with other ADD
grantees subject to the regulation; and (3) improvements in the ability
of individuals with developmental disabilities to make choices about
and exert control over the services which they receive, to participate
in the full range of community life with persons of the individual's
choice, and to access services, supports, and assistance to ensure the
individual is free from exploitation, violations of legal and human
rights, and inappropriate restraint or seclusion.
The approach taken by the Administration on Developmental
Disabilities in developing the proposed regulations was to comply with
the requirements of the Act while preserving the capacity of grantees
to design their programs to meet the needs of their individual
communities as provided under the Federal Assistance to State Councils
on Developmental Disabilities, the system of Protection and Advocacy of
Individual Rights, and the national network of University Centers for
Excellence in Developmental Disabilities Education, Research, and
Service.
The proposed regulations were developed in response to these
requirements as follows: paragraph (a) Program Accountability Process;
paragraph (b) Measures of Progress; paragraph (c) Indicators of
Progress; paragraph (d) Measures of Consumer Satisfaction; paragraph
(e) Measures of Collaboration; and paragraph (f) Measures of
Improvement.
For each area of emphasis under which a goal has been identified,
each State Council on Developmental Disabilities, P&A, and UCEDD must
state in its required planning document (State plan for Councils,
Statement of Goals and Priorities for P&As, and the Five-Year plan for
UCEDDs) the measures of progress (measures of
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consumer satisfaction, improvement, and collaboration) to be applied to
its goals in the areas of emphasis selected for each year covered by
the planning document. Each UCEDD plan also must categorize its goals
under both an area of emphasis and one of its four core functions.
Those functions are: (1) Interdisciplinary pre-service preparation and
continuing education of students and fellows; (2) community services
that provide training or technical assistance; (3) conduct of research;
and (4) dissemination of information.
Accordingly, under paragraph (a)(1) as proposed, the required
planning document must classify under one or more areas of emphasis
each of the goals related to advocacy, capacity building, and systemic
change activities to be pursued during the year. The areas of emphasis
selected may vary from grantee to grantee. UCEDDS also must classify
any goal activity in terms of mandated core functions. Following is an
example of the Education and Early Intervention area of emphasis using
the goal of children with developmental disabilities being included in
preschool programs:
Example: Area of Emphasis: Education and Early Intervention.
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Long-term goal Short-term objective Role of State Council Role of P&A Role of UCEDD
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Children with Number of children Present information Train parents on Train Head Start
developmental with developmental to Head Start legal rights of providers on
disabilities are disabilities in Head directors on number children with inclusion of
included in Start programs will of children with developmental children with
preschool programs. increase by 10%. developmental disabilities to developmental
disabilities waiting participate in disabilities in the
for inclusive preschool programs. classroom.
preschool programs. Include information Follow up to
Attend meetings of on accessibility, determine actual
Head Start directors ADA, assistive increase in number
to outline issues technology, etc. of children
and barriers. included.
Convene meeting of
Head Start directors
and DD Act network
to develop plan of
action.
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Paragraph (a)(2) requires that for each area of emphasis the
required planning document must include measures of progress for goals
identified measuring: Consumer satisfaction; collaboration; and
improvements in outcomes for persons with developmental disabilities.
Measures of progress developed must be able to, over time, demonstrate
whether the grantee has achieved progress in meeting the goals of the
Act through its advocacy, capacity building, and systemic change
activities.
Paragraph (a)(3) provides that the measures of progress must meet
all applicable program regulations. In the event the planning document
fails to meet these regulatory requirements, the Commissioner shall
decline to accept the planning document.
Paragraph (a)(4) requires that the results of the application of
the measures of progress for each areas of emphasis under which a goal
has been established be reported.
Paragraph (c) of the proposed rule requires that for each of the
areas of emphasis under which the State Councils on Developmental
Disabilities, the P&A, or UCEDD has classified activities, the
indicators of progress shall be the grantee's achievement of the
measures of progress it has established pursuant to this section for
the years on which the grantee is reporting. Each State Council on
Developmental Disabilities, the P&A, and UCEDD is required to meet the
indicators of progress for each of the areas of emphasis in which it
has classified activities for the year on which it is reporting.
Measures of consumer satisfaction are addressed under proposed
paragraph (d). Under this paragraph, each State Council on DD, P&A, and
UCEDD must establish criteria on the level of consumer satisfaction to
be attained for each area of emphasis for each goal identified and
track its progress.
Any grantee that is a member of the ADD Network must establish a
goal or goals in one or more areas of emphasis. For each area of
emphasis selected, a grantee must measure progress related to its
goal(s) through activity(ies) in terms of consumer satisfaction in each
of its selected area(s) of emphasis. Consumer satisfaction may be
measured by the results of surveys of individuals with developmental
disabilities affected by its activities, surveys of stakeholders, focus
groups, and phone interviews. A grantee may include reports on whether
the planned activity associated with a goal resulted in improved access
to services for individuals with developmental disabilities.
The following is an example of consumer satisfaction measures with
respect to a Council. A State does not currently have a program to
financially assist families who care for their children with
developmental disabilities who live at home. A Council plans to fund a
voucher program to support these families and children. Using examples
from other States, several different approaches will be used with
vouchers going toward different services including housing and child
care. The Council plans to locate families and provide vouchers.
Consumer satisfaction is measured through a post-activity
questionnaire. A consumer survey of the program is planned to provide
this information. The survey will address how the activity: (1)
Improved the ability of individuals with developmental disabilities to
exert choice and control over the services, support, and assistance;
(2) Improved the ability to participate in community life; (3) Improved
the ability to access services in a way that the individual is free
from abuse, neglect, exploitation, and harmful treatment; and (4)
Improved the individual's situation and circumstances. A final
evaluation will lead to the development of a legislative proposal to
introduce a permanent program for the State. This would be a Council
systemic change, capacity building activity. The results of these
measures must be reported in the annual Program Performance Report.
The following is an example for P&As. A P&A plans to represent
children who are not being allowed into an inclusive program at schools
within the State. Looking at enrollment data the P&A targets three
counties. The P&A identifies the cases of greatest need. The
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P&A then works with the school districts on Individualized Education
Programs, facilitating the placement of children with developmental
disabilities into regular classrooms. The P&A documents the numbers of
children placed in inclusive programs as a result of the intervention,
surveys those involved with this initiative and obtains their input to
assist the P&A with future advocacy activities. This is a P&A advocacy
activity. The goals in this example focus on: Identifying clients to be
served; targeted education and early intervention as the area of
emphasis; tracking progress through improvement measures; and, surveys
that measure client satisfaction.
The following is a UCEDD example. A UCEDD wants to train a group of
pediatricians to serve individuals with developmental disabilities. The
UCEDD identifies the group and provides the training. It checks back
with the pediatricians to see if the training helped them. Consumer
satisfaction is measured through a survey of a sample of patients or
family members/advocates to assess the level of their satisfaction with
their pediatricians trained by the UCEDD and to receive recommendations
on expansion or changes in the training activities. This is a UCEDD
capacity building activity. The goals in this example focus on the
health area of emphasis. The type of activity includes training via
curricula, role playing, case example, and/or consumer or family
member/advocate interview or presentation. The UCEDD measure of
progress would be an increase in pediatricians' caseloads of clients
with developmental disabilities and patients being satisfied with the
care they received from trained pediatricians.
Proposed paragraph (e) specifies the requirement related to
measures of collaboration. Under this paragraph, we propose to require
each Council, P&A, and UCEDD to identify collaborative activities it
will implement for each area of emphasis related to a goal. Under the
proposal, UCEDDs also must identify interstate collaborative
activities. In-state collaborations must include a meeting or
Memorandum of Understanding on the proposed collaborative activities.
Collaboration among a State's ADD grantees is very important. By
collaboration ADD means efforts in which all three categories of a
State's grantees work together (State Council, P&A, and UCEDD). In some
States there are multiple UCEDDs. In these States the multiple UCEDDs
would be expected to collaborate with each other and the State's
Council and P&A.
Proposed paragraph (f) specifies requirements related to measures
of improvement. Under this proposed paragraph, State DD Councils, P&As,
and UCEDDs must establish measures of improvement they will attain for
each area of emphasis where a goal has been established by assessing
the extent to which grantee activities have improved outcomes for
individuals with developmental disabilities.
Specifically, under the proposed rule, improvement measures assess
the contribution of a grantee's activity to the ability of individuals
with developmental disabilities to: (1) Make choices and exert control
over the type, intensity, and timing of services, supports, and
assistance that the individuals have used; (2) participate in the full
range of community life with persons of the individual's choice; and
(3) access services, supports and assistance in a manner that ensures
that such an individual is free from abuse, neglect, sexual and
financial exploitation, violation of legal and human rights, and the
inappropriate use of restraints and seclusion.
Improvement measures a grantee selects will be influenced by the
nature of the goal(s) set by a grantee for its selected area(s) of
emphasis. Describing and measuring improvements requires collection of
baseline data and then tracking change. It would be appropriate to use
either qualitative or quantitative measures, or both. ADD recognizes
that a goal, rather than an area of emphasis, may be a determinant
factor when a grantee decides on which improvement measures to use.
The following is an example of improvement measures with respect to
a Council. A Council selects the area of emphasis on employment. A goal
is established that individuals with developmental disabilities will be
employed through a variety of flexible employment options, including
self-employment and working for temporary service agencies. The
activities are to foster collaboration, provide technical assistance
and training. The Council will work with the Division of Vocational
Services (DVS) who will then contact interested individuals to develop
work plans. Such plans will include marketing strategies and budgeting
for fiscal responsibility. The Council will coordinate small, low-
interest loans through the local Business Leadership network and the
Chamber of Commerce. Measures of progress will include: Adults have
jobs of their choice through Council efforts; increased dollars
leveraged for employment programs; employment programs or policies are
created/improved; and individuals with developmental disabilities have
additional employment opportunities.
An example of an improvement measure with respect to an agency
designated to administer the State P&A system follows. A P&A agency
selects the area of emphasis on employment. A goal is established to
reduce discrimination in the hiring, promotion, termination and failure
to provide reasonable accommodations for people with developmental
disabilities. The activities will be tied to requests for assistance. A
case comes up involving a thirty year old person with mental
retardation who lives in the community and has worked in the mailroom
of a local bank for seven years. Following a change in management, the
individual has a new supervisor. This supervisor has been increasingly
hostile to the individual, including making it difficult for the
individual's job coach to provide on-site assistance. In this case, the
P&A will document that they provided training to management of the bank
on the Americans with Disabilities Act, information on what constitutes
a reasonable accommodation and information on the importance of natural
supports to assist individuals with developmental disabilities to live
and succeed in the community. This information included literature and
contact information. The measure of progress will include increased
consumer satisfaction with changes in workplace conditions after P&A
intervention, and individuals with developmental disabilities will
retain jobs in competitive workplace environments. The P&A would use
this measure as baseline and work towards increasing the number of
individuals being served.
An example of improvement measures with respect to a University
Center follows. A UCEDD wants to develop, implement, and evaluate a
comprehensive statewide training program for direct support
professionals (e.g., personal care assistants, occupational and
physical therapy aides, home health aides, medical assistants, and
human services case managers). The UCEDD establishes a timeframe of
five years. The UCEDD develops a curriculum, obtaining input from other
UCEDDs and other network partners and from individuals with
developmental disabilities or family members/advocates. The UCEDD
trains direct support professionals with the curriculum. The UCEDD
evaluates its program annually and at the end of the five-year period,
using input from all parties involved with respect to their
satisfaction and recommendations for
[[Page 19713]]
future activities and revision of materials. The goals of this example
focus on the health area of emphasis. The type of activity includes
training via modules, role-playing, case examples, and/or consumer or
family member/advocate interview or presentation. The proposed UCEDD
measure of progress would be an increase in the number of direct
support personnel successfully trained.
As indicated above, under this proposed rule the areas of emphasis
may vary from grantee to grantee. Examples that highlight the
flexibility grantees have in selecting areas of emphasis include: (1)
State Councils--One Council may focus on activities that support
individuals with developmental disabilities in obtaining employment,
while another Council may award funding to a model demonstration
project to provide vouchers for respite care to families of persons who
have developmental disabilities; (2) Protection and Advocacy System
(P&A)--One P&A may spend time assisting children with developmental
disabilities to secure an education in their neighborhood schools,
while another P&A may focus on abuse and neglect within a large State-
run residential facility; (3) University Centers for Excellence in
Developmental Disabilities Education, Research, and Service (UCEDDs)--
One UCEDD may provide direct clinical services by performing diagnostic
evaluations on children with developmental disabilities, while another
UCEDD may be involved with aging issues and people with developmental
disabilities. This NPRM maximizes flexibility and fosters collaboration
among grantees of the ADD Network.
These proposed provisions are based in part on input from the
field. The requirements also represent an evolution of a product called
the ADD Roadmap to the Future, written prior to the DD Act of 2000. The
Roadmap was developed to establish performance measures. Reporting
mechanisms were developed in response to the requirements of the
Government Performance and Results Act (GPRA) in 1993.
GPRA was passed in response to ongoing concerns that policy making,
spending decisions, and program oversight were being hindered by
insufficient information about program performance and results. GPRA
holds agencies accountable for program performance by requiring the
development of a five-year strategic plan, an annual performance plan,
and an annual performance report. The strategic plan must include a
comprehensive mission statement and general goals and objectives
covering the major functions and operations of the agency. The annual
performance plan must: (1) Be consistent with the agency's strategic
plan; (2) establish measurable performance goals; and (3) describe the
operational processes, resources and technology required to meet the
performance goals. The agency must submit an annual performance report
to the President and the Congress on the results for the previous
fiscal year. The performance report compares the annual performance
goals established for the fiscal year with the actual performance
achieved in that year. The report assesses the progress made in
achieving the goals and explains factors causing deviations from the
original goal targets.
It is important that the ADD programs continue to focus on the GPRA
measures, where applicable, as well as the goals and activities tied to
the measures of progress.
Prior to 2002, ADD's GPRA measures focused on consumer impact,
systemic change, and the establishment of baseline data in the areas of
employment, housing, education, health, self-determination, and
community inclusion. Although grantees may focus on any area(s) of
emphasis through their goals, we encourage that goals be tied to ADD's
GPRA measures.
Section 1385.6 Employment of Individuals With Disabilities
This section of the regulation addresses grantee responsibilities
regarding affirmative action and employment tied to disability without
discrimination and is proposed to be published unchanged except to
update statutory and U.S. Code citations.
Section 1385.7 Reports of the Secretary
We are proposing to add a new section covering Reports of the
Secretary as required by Section 105 of the DD Act of 2000 (42 U.S.C.
15005) at Sec. 1385.7 which is currently reserved. Under the proposed
language, in order for ADD to have the required information to prepare
the Report to Congress all grantees would be required to submit plans,
applications and reports that label goals, activities and results
clearly in terms of the following: Area of emphasis, type of activity,
and categories of measures of progress.
Section 1385.8 Formula for Determining Allotments
This section addresses how the Commissioner will allocate funds
appropriated under the Act for the Councils and the P&As. This section
of the regulation is proposed to be published unchanged except to
update the reference from State Developmental Disabilities Councils to
State Councils on Developmental Disabilities.
Section 1385.9 Grants Administration
The NPRM proposes technical changes to Sec. 1385.9 to include
reference to two additional parts of title 45 CFR that apply to grants
under this section, 45 CFR part 76--Government-Wide Debarment and
Suspension (Non-Procurement) and Government-Wide Requirements for Drug-
Free Workplace and 45 CFR part 93--New Restrictions on Lobbying, and to
delete reference to Part 75--Informal Appeal Procedures, as these
requirements have been withdrawn by the Department of Health and Human
Services. Other changes are proposed to address terminology changes
made by the DD Act of 2000.
PART 1386--FORMULA GRANT PROGRAMS
Subpart A--Basic Requirements
Section 1386.1 General
The NPRM proposes technical changes to Sec. 1386.1 to update the
terminology.
Section 1386.2 Obligation of Funds
Similarly, the NPRM revises Sec. 1386.2 to update terminology.
We propose to revise the title of subpart B to read: Subpart B--
Protection and Advocacy of Individual Rights.
Section 1386.19 Definitions
This section of the NPRM revises the terms and definitions that
apply in Sec. Sec. 1386.20, 1386.21, 1386.24 and 1386.25 of this
subpart and to subpart C. Specifically:
The definition of ``abuse'' has been revised to be
consistent with the interpretation contained in the preamble
accompanying the Protection and Advocacy for Individual with Mental
Illness (PAIMI) regulation, at 62 FR 53551 (Oct. 15, 1997). The current
regulation includes a list of acts that constitute abuse. The new
language indicates that what constitutes abuse is not limited to these
acts. The regulation does not define specifically the threshold at
which a violation of an individual's rights constitutes abuse. Such a
decision would be up to the P&A system to determine based on their
intimate knowledge of the situation on behalf of an individual with
developmental disabilities. The definition is not intended to limit the
authority of the courts to review the
[[Page 19714]]
determinations of P&As of whether individuals with developmental
disabilities have been subject to abuse.
The definition of ``American Indian Consortium'' was added
to clarify the eligibility requirements for the award of an American
Indian Consortium under the P&A program. The American Indian Consortium
is unique to the P&A program and carries out the responsibilities and
exercises the authorities specified for a state.
The definition of ``complaint'' has been revised from
language indicating that the complaint be tied to alleged abuse or
neglect of an individual with a developmental disability to broader
language indicating that the complaint relates to the status or
treatment of an individual with a developmental disability.
The definition of the term ``facility'' was deleted. The
Act no longer refers to ``facilities,'' but instead refers to ``a
location in which services, supports, or other assistance are provided
to an individual with a developmental disability.'' See 42 U.S.C.
15043(a)(2)(H) (access authority) and 42 U.S.C. 15043(c) (definition of
``records''). The Act's use of this phrase confirms that P&As may serve
persons residing in community settings so we also are deleting the
definition of ``Community living arrangements.''
The term ``full investigation'' has been revised to delete
reference to ``facilities'' and ``clients'' to be replaced with the
phrase ``individuals with developmental disabilities'' as all eligible
persons are to have access to P&A services, not just those where a
client relationship has been established.
The definition of ``neglect'' has been revised to indicate
that an individual perpetrating the act of neglect now must be
responsible for providing ``services, supports or other assistance''
rather than an individual providing ``treatment or habilitation
services.''
The definition of ``probable cause'' has been revised. The
proposed regulation indicates that the P&A system is the final arbiter
of probable cause between itself and the organization or individuals
from whom it is seeking records. The definition is not intended to
affect the authority of the courts to review the determinations of P&As
of whether probable cause exists.
Additionally, a new definition of ``Service Provider'' has
been proposed. The definition states, the term ``service provider''
refers to any individual (including a family member of an individual
with a developmental disability), or a public or private organization
or agency that provides, directly or through contract, brief or long-
term services, supports or other assistance to one or more individuals
with developmental disabilities. Service providers include, but are not
limited to, locations such as group homes, board and care homes,
individual residence and apartments, day programs, public and private
residential and non-residential schools (including charter schools),
juvenile detention centers, hospitals, nursing homes, homeless
shelters, and jails and prisons.
A definition of ``State Protection and Advocacy system''
has been added to clarify that the term ``State Protection and Advocacy
System'' is synonymous with the term ``P&A'' used elsewhere in this
regulation, and the terms ``system'' and Protection and Advocacy system
used in this part and in Part C.
Section 1386.20 Agency Designated To Administer the State Protection
and Advocacy System
ADD is proposing to revise the title of section 1386.20 to Agency
Designated To Administer the State Protection and Advocacy System from
Designated State Protection and Advocacy Agency. The statute makes a
distinction between the ``system'' which must be in existence and the
agency implementing the system. See 42 U.S.C. 15043(a)(4). This phrase
has been substituted throughout this section of the proposed rule as
appropriate.
ADD also is proposing to revise paragraph (e)(6) regarding
redesignation to clarify that the P&A and the designating official will
have an opportunity to respond to comments from agencies administering
the Federal protection and advocacy program. Additionally, statutory
citations have been updated for paragraphs (d)(2)(i) and (f)(2), and
paragraph (d)(4) has been slightly edited.
Section 1386.21 Requirements and Authority of the State Protection and
Advocacy System
ADD is proposing to revise the title to include a reference to
``State'' in relation to the Protection and Advocacy System for
clarity. In paragraphs (a) and (f) we are proposing to update
terminology and statutory cites. We are proposing two substantive
changes. First, we propose to revise paragraph (c) to include
additional language regarding prohibited State actions which would
diminish or interfere with the exercise of the P&As required authority.
Second, in order to ensure that the notice and the opportunity for
comment is given to all individuals who might potentially be interested
in commenting, ADD is proposing to revise paragraph (h) to indicate
that prior to any Federal review of the State program, a 30-day notice
and opportunity for public comment must be provided in the Federal
Register.
To improve organization of the regulation, ADD is proposing to
redesignate current Sec. 1386.22 as section 1386.25 that would be
included under a new subpart C. This section is discussed in more
detail later in the preamble.
Current section 1386.23 is proposed to be revised and redesignated
as Sec. 1386.22, Periodic Reports: State Protection and Advocacy
System.
Under proposed section 1386.22 ADD is proposing to revise the title
to include a reference to ``State'' in relation to the Protection and
Advocacy System for clarity. ADD is proposing to revise paragraph (a)
to address the requirements of Section 144(e) of the Act (42 U.SC.
15044), the applicable regulations and include information on the
system's program necessary for the Secretary to comply with Section
105(1), (2), and (3) of the Act (42 U.S.C. 15005). Each system must
report on its achievement of the measures of progress for the
proceeding year pursuant to section 1385.5.
ADD is proposing to revise paragraph (b) to clarify what financial
report is required and that the report shall be submitted semiannually.
ADD also is proposing to revise paragraphs (c) and (d) to update
terminology, including converting references to ``Statement of
Objectives and Priorities (SOP)'' to Annual Statement of Goals and
Priorities (SGP). Under paragraph (c), we also are proposing to include
language regarding each area of emphasis and the measure of progress
(measures of consumer satisfaction, improvement, and collaboration) as
provided under section 1385.5 of this part to measures goals. If
changes are made to the goals or the measures of progress established
for a year, the SGP must be amended to reflect those changes. The SGP
must include a description of how the Protection and Advocacy system
operates, and where applicable, how it coordinates the State Protection
and Advocacy program for individuals with developmental disabilities
with other Protection and Advocacy programs administered by the State
Protection and Advocacy system. This description must include the
System's processes for intake, internal and external referrals, and
streamlining of advocacy services. The description also must address
collaboration, the reduction of duplication and overlap of services,
the sharing of information on service needs,
[[Page 19715]]
and the development of statements of goals and priorities for the
various advocacy programs. In addition, we are proposing that each
Protection and Advocacy system be required to disclose in its SGP
whether it will be requesting or requiring fees or donations from
clients as part of the intake process. This new requirement is being
proposed in order that the public will have notice of such a policy and
an opportunity to comment on it as part of the process required under
paragraph (d).
Section 1386.24 Non-allowable costs for the State Protection and
Advocacy System of the current regulations is proposed to be
redesignated as section 1386.23. ADD is proposing to revise the title
to include a reference to ``State'' in relation to the Protection and
Advocacy System for clarity. We are republishing the full text of newly
designated Sec. 1386.23, Non-allowable costs for the State Protection
and Advocacy System for the ease of public comment. No changes are
proposed to be made in this section.
Finally, section 1386.25 Allowable litigation costs for the State
Protection and Advocacy System, is proposed to be redesignated as
section 1386.24. ADD is proposing to revise the title to include a
reference to the ``State Protection and Advocacy System'' for clarity.
We are republishing the remaining text for the ease of public comment.
Subpart C--Access To Records, Service Providers and Service Recipients
ADD is proposing to create a new subpart C. This change is being
proposed because of the increased level of importance and detail that
accessing records of individuals with developmental disabilities plays
in supporting the P&A system in investigating suspected cases of abuse
and neglect. ADD also is proposing to make the regulation on access to
records consistent, where applicable, with the PAIMI regulation
referenced earlier (42 CFR part 51.41). The goal is to ensure that all
facets of the P&A system administered by the Department are subject to
the same legally supportable requirements. ADD is the lead agency that
administers the P&A system and the DD Act establishes those
requirements. Many of the changes reflect the new access authority
language contained in 42 U.S.C. 15043(a)(2)(I) and (J). Where we
exercise discretion, we do so in the belief that the proposed
provisions are necessary to meet Congress' underlying intent to ensure
necessary access to records to promote the System's authority to
investigate abuse and neglect and ensure the protection of rights. This
broad interpretation of available records and reports also is
consistent with the requirements of the PAIMI regulations.
This NPRM addresses key provisions in subtitle C (42 U.S.C.
15043)(a)(1); (2)(A), (H), (I), (J); and (c) Protection and Advocacy of
Individual Rights, in the DD Act that pertain to P&As access to service
providers, access to recipients of services (i.e., individuals with
developmental disabilities) and access to records when incidents of
abuse or neglect are suspected or reported, the health and safety of
individuals with developmental disabilities are in jeopardy or are
suspected of being in jeopardy, or in the case of a death of an
individual with a developmental disability. In addition, the NPRM
addresses provisions in Subtitle C concerning when consent for access
to records from an individual with a developmental disability or the
individual's guardian, conservator or legal representative is required
and when it is not required. Moreover, the NPRM addresses provisions in
Subtitle C that describe examples of the types of records to which a
P&A shall have access. Given the obligation of P&As to conduct
investigations of the incidences described here and in certain
circumstances to contact an individual's guardian, conservator or legal
representative, the Administration on Developmental Disabilities takes
the position in this NPRM that a P&A shall have prompt access to
contact information of such individuals. The law and this NPRM make
distinctions about when a P&A will have access to records between
``routine incidents'' and other incidents involving abuse, neglect,
health, safety, or a death.
The NPRM approach to addressing these key provisions are not only
consistent with the DD Act but also consistent with the 2nd Circuit
decision in ``State of Connecticut Office of Protection and Advocacy
for Persons with Disabilities and James McGaughey, Executive Director,
State of Connecticut, Office of Protection & Advocacy for Persons with
Disabilities v. Hartford Board of Education, Hartford Public Schools
and Robert Henry, Supt. Of School.''
Consistent with the DD Act, the 2nd Circuit's decision, and the
proposed definition of ``service provider'' elsewhere in this NPRM,
when schools provide services to individuals with developmental
disabilities, they must provide P&As with access to locations,
individuals, and records under the conditions spelled out in the DD Act
(42 U.S.C. 15043)(a)(1); (2)(A), (H), (I), (J); and (c)).
Second, the 2nd Circuit decision and this NPRM track the DD Act,
requiring that a P&A have access at reasonable times to any individual
with a developmental disability in a location in which services,
supports, and other assistance are provided to such an individual, in
order to carry out the purpose of Subtitle C ((42 U.S.C.
15043)(a)(2)(H)). It is important to note that the DD Act, and
therefore this NPRM makes no distinctions on the basis of age with
regard to access an individual by the P&A.
Third, the 2nd Circuit in its decision and this NPRM recognize that
the charge to P&As is to engage in a range of activities--protect the
legal and human rights of individuals with developmental disabilities
and monitoring for incidents of abuse or neglect and the health and
safety of individuals with developmental disabilities. Thus, a P&As
work does not end when it investigates and brings to closure a specific
incident of abuse or neglect or risk to health and safety. We interpret
the DD Act as providing P&As with the authority to pro-actively monitor
situations where abuse and neglect or risks to health and safety may
occur. We believe this NPRM outlines reasonable parameters for which
P&As may have access to individuals with developmental disabilities,
their records, their service providers, and the locations where
services are provided to them, even under non-emergency situations
(i.e., those not involving allegations of abuse or neglect, probable
cause to believe that the health or safety of the individual is in
serious and immediate jeopardy, or in the case of a death).
Fourth, this NPRM and the DD Act are very specific in terms of when
consent for records is required. In situations in which an individual's
health and safety are in immediate jeopardy or a death has occurred, no
consent is required and access to records should be provided no later
than within 24 hours (42 U.S.C. 15043(a)(2)(J)(ii)). The 2nd Circuit in
its decision recognizes and cites the DD Act as having special
conditions (noted here) when an emergency situation is the issue (
i.e., those involving allegations of abuse or neglect, probable cause
to believe that the health or safety of the individual is in serious
and immediate jeopardy, or in the case of a death).
Fifth, the 2nd Circuit, the DD Act (at 42 U.S.C.
15043(a)(2)(I)(iii)(III)-(V)), and this NPRM recognize the importance
of having contact information when P&As are conducting investigations.
As such, and consistent with the 2nd Circuit, this NPRM proposes to
require that P&As
[[Page 19716]]
have access to contact information when conducting an investigation. In
incidences of suspected or reported abuse or neglect (when such
incidents have been reported or good cause has been shown), risks to
health and safety, or in the case of a death of an individual with a
developmental disability, timing is a vital factor. Service providers
should maintain up-to-date contact information for individuals with
developmental disabilities, and parents, guardians, legal
representatives, or conservators for individuals with developmental
disabilities. In the situations noted here, when asked by a P&A for
this contact information, a service provider should provide the
information immediately.
As indicated previously, section 1386.22 is proposed to be
redesignated and renamed section 1386.25 Access to Records. We are
proposing to revise section 1386.25(a)(3), as redesignated, to
incorporate monitoring activities and changing reference to ``health
and safety'' to ``abuse or neglect.'' In paragraph (3)(i), we propose
to add a requirement for disclosure of the name and address of a
representative be given to the P&A promptly. ADD believes that it is
critical to the investigative function that P&As be given access to the
names of representatives promptly. This requirement prevents undue
delay in the P&As' intervention in the prevention of further abuse and
neglect. Paragraphs (a)(2)(iii) and (3)(ii), as redesignated, are
republished with slight edits. Paragraph (3)(iii) has been changed to
read, ``the representative has failed or refused to act on behalf of
the individual.''
We also are proposing to make changes to section 1386.25(b) as
redesignated. In paragraph (b)(1) we propose to delete reference to
``supportive'' and refer instead to ``supports or assistance'' and
``service provider'' to be consistent with the Act. The language
regarding reports available to the P&A is based on Congress' intent to
ensure access to records to promote the System's authority to
investigate abuse or neglect and ensure the protection of rights. The
remainder of paragraph (b) has been revised to reflect editorial
changes.
ADD also is proposing to revise paragraph (c) of this section to
reflect new authority contained in the DD Act of 2000. Specifically,
the second sentence of (c)(1) proposes language related to access to
the records of a deceased person without any showing of probable cause,
and is based on our interpretation of 42 U.S.C. 15043
(a)(2)(J)(ii)(ll). The provision also requires that a P&A have access
to records of an individual with a developmental disability within 24
hours of the P&A's written request when the P&A has probable cause to
believe that the individual is in serious and immediate jeopardy. In
the case of a deceased individual or where the P&A has probable cause
to believe the individual is in serious and immediate jeopardy, the
consent of another party is not necessary for access to the records.
ADD is also proposing to set a standard in the regulation for
determining whether a decedent had a developmental disability. The
proposed regulation provides: ``Any individual who dies in a situation
in which services, supports, or other assistance are, have been, or may
customarily be provided to individuals with developmental disabilities
shall, for purposes of the P&A's obtaining access to the individual's
records, be deemed an individual with a developmental disability.'' The
purpose of this proposal is to simplify the task of P&As in
establishing that the decedent was an individual with a development
disability. Proving that the functional definition of the developmental
disability which appears in Section 102(8) of the Act applies to a
living person can be difficult; it will be all the more difficult to
prove its application to an individual who is no longer living. In
making this proposal ADD is seeking to avoid making access to the
records of a deceased individual so difficult that the intent of
Congress in enacting Section 143(a)(2)(J)(ii)(II) of the Act would be
frustrated.
ADD is proposing to remove all of section 1386.25(e) as
redesignated and consolidate the provisions into section 1386.28(e),
discussed later in this preamble.
Proposed section 1386.25(d) addresses the remaining provisions
regarding sharing and copying of records. This paragraph proposes, ``If
the organization or agency having possession of the records copies them
for the P&A system, it may not charge the P&A system an amount that
would exceed the amount it customarily charged other non-profit or
State government agencies for reproducing documents.'' These revisions
also will make this new section consistent with the PAIMI regulation.
The PAIMI regulation states (42 CFR 51.41) that the P&A system may not
be charged for copies more than is ``reasonable'' according to
prevailing local rates, and certainly not a rate higher than that
charged by any other service provider, and that nothing shall prevent a
system from negotiating a lower fee or no fee. Many service providers
have tried to impose excessive costs on P&As for copies as a means of
obstructing access. The above clarifications are necessary to prevent
this from occurring. Also the clarification on the time frame during
which copies of records must be provided to P&As is necessary to avoid
the frequently long delays in this regard. Often it is the service
provider and not the P&A which makes the copies of the requested
records. Prompt access for the P&A to inspect records is of little
assistance in its investigation if copies of the records themselves are
not provided quickly.
In Sec. 1386.25(d) it is not the intent of ADD that the
requirement for P&As to have a right to use their own equipment for
copying be used to require that organizations being investigated allow
P&As to remove records from the organization's premises to make the
copies. The remaining provisions of 1386.25 as redesignated, ((current
regulations section 1386.22 (f), (g), (h) and (i)), are proposed to be
incorporated into new Sec. Sec. 1386.26 and 1386.27 as discussed
below.
ADD is proposing a new section 1386.26 named ``Denial or Delay of
Access.'' This section parallels the PAIMI regulation at 42 CFR 51.43.
Under this paragraph, P&As must be able to obtain the identities of
service recipients from service providers (who have control of this
information). The confidentiality of such P&A records as proposed are
protected under other provisions of this regulation. In emergency
situations or in the case of a service recipient's death, section
143(a)(2)(J)(ii) of the DD Act provides P&As with access to records of
service recipients within 24 hours after written request is made and
without consent. In that vein, we propose a one-business day deadline
for providing the written justification denying access. ADD believes
that such standards are necessary in recognition of the consequences of
not accessing individuals quickly when there are allegations of abuse
or neglect, probable cause to believe that the health or safety of the
individual is in serious and immediate jeopardy, or in the case of a
death.
Section 1386.26 concludes with a description of the information
that should be included in the justification denying access. This
provision is contained in current regulations at 1386.22(i).
ADD is proposing a new section 1386.27 Access to Service Providers
and Service Recipients to replace section 1386.22(f) of the current
regulations. Under this section, the term ``service provider'' is
substituted throughout for the term ``facility.'' The language
[[Page 19717]]
otherwise remains the same except for editorial changes. We are
proposing changes under (b)(1) through (3) to address the times and
circumstances under which access shall be afforded. This language is
consistent with the PAIMI regulation (62 FR 53561-62).
In this NPRM, we propose that P&A systems should not be required to
provide notice to a service provider when they are coming to
investigate an allegation of abuse or neglect, when they have probable
cause to believe that the health or safety of the individual is in
serious and immediate jeopardy, or in the case of a death. However,
P&As should give notice when it will be visiting a service provider as
part of an investigation in non-emergency situations (those not
involving allegations of abuse or neglect, probable cause to believe
that the health or safety of the individual is in serious and immediate
jeopardy, or in the case of a death).
ADD is proposing that P&A systems should have the right to access
service providers ``all times necessary * * *'' to conduct a full
investigation, and particularly when the system has determined
``probable cause'' that there is or may be imminent danger of serious
abuse or neglect of an individual. ADD believes that immediate access
is necessary with respect to service providers to permit P&As to
uncover situations that may involve immediate threats to health or
safety. It also is necessary to prevent interested parties from
concealing situations involving abuse or neglect or taking actions
which may compromise evidence related to such incidents (such as
intimidating staff or service recipients).
To address this, ADD is proposing a new subsection 1386.27(c) which
replaces section 1386.22(g) of the current regulation. We are proposing
to add new language in paragraph (c) to read, ``A P&A also shall be
permitted to attend treatment planning meetings concerning individual
service recipients with the consent of the individual or his or her
guardian, conservator or other legal representative. Access to
facilities shall be afforded immediately upon an oral or written
request by the P&A system. Except where complying with the P&A's
request would interfere with treatment or therapy to be provided,
service providers shall provide access to individuals for the purpose
covered by this paragraph within 24 hours of the system's making a
request. If the P&A's access to an individual must be delayed beyond 24
hours to allow for the provision of treatment or therapy, the P&A shall
receive access as soon as possible thereafter. Service recipients
subject to the requirements in this paragraph include adults or minors
who have legal guardians or conservators. P&A activities shall be
conducted so as to minimize interference with service provider
programs, respect service recipients' privacy interests, and honor a
recipient's request to terminate an interview.'' Under the proposed
rule, such access is for the purpose of:
(1) Providing information, training, and referral for programs
addressing the needs of individuals with developmental disabilities,
and information and training about individual rights, and the
protection and advocacy services available from the P&A system,
including the name, address, and telephone number of the P&A;
(2) Monitoring compliance with respect to the rights and safety of
service recipients; and
(3) Inspecting, viewing and photographing all areas of a service
provider's premises which are used by service recipients or are
accessible to them.
ADD is proposing these changes to clarify that access be permitted
to treatment planning meetings (with the consent of the individual or
his or her guardian), as such access is needed to assure that service
providers are protecting the health and safety of service recipients.
The limitation related to individual/guardian consent would provide an
appropriate safeguard concerning privacy. Consent of other individuals
who may be receiving treatment or services at the same location (for
example, group therapy situations) will be tied to the policies of the
premises where the care is being provided.
The ADD proposed regulations support the PAIMI Act regulation. For
example, such access is supported by the legislative history of the
PAIMI Act, which provides that P&As must be afforded ``access to
meetings within the facility regarding investigations of abuse and
neglect and to discharge planning sessions.'' S. Rep. 454, 100th Cong.,
2d Sess. (1988). Based on this statement (and in the interest of
assuring consistency with the PAIMI Program), the P&A also should be
authorized to attend treatment team meetings, which serve some of the
same purposes as discharge planning sessions. The DD Act and its case
law generally support extremely broad access to individuals to monitor
conditions relating to safety and health. We interpret these
authorities, then, to generally support treatment team access; as such
access is an important strategy in monitoring the adequacy of health
care.
We are further proposing to move section 1386.22(h) in the current
regulation to section 1386.27(d) in the proposed regulation. Changes
proposed are only editorial.
Similar to the approach used in the PAIMI regulation at section 42
CFR 51.45, ADD is proposing to incorporate in a new section 1386.28,
Confidentiality of Protection and Advocacy Systems Records. This
section will replace the current ADD regulation in 45 CFR 1386.22(e),
Access to Records, Facilities and Individuals that deals with P&A
access authority. Because the confidentiality provisions relate to a
broad range of client information, and not only materials obtained
through the P&A's access authority, it is more appropriate to address
the issues in a separate, dedicated section of the regulation. ADD also
proposes that the new provision on confidentiality be modeled after the
existing provision on this subject in the PAIMI regulation at 42 CFR
51.45, with certain alterations. Paragraph (a) and (a)(1) of section
1386.28 as proposed mirror the existing provisions (1386.22(e) and
(e)(3)) with editorial changes. Paragraphs (a)(1)(i), (ii), (iii) and
(iv) contain new language to clarify that the P&A must keep
confidential--records and information, in any automated electronic
database pertaining to clients; individuals who have been provided
general information or technical assistance on a particular matter; the
identity of individuals who report incidents of abuse or neglect, or
who furnish information that forms the basis for a determination that
probable cause exists and names of individuals who have received
services; and names of individuals who have received services, supports
or other assistance, and who provided information to the P&A for the
record. Paragraph (a)(2) remains the same as current regulations
(1386.22(e)(2)). Paragraph (a)(2) requires the P&A systems to have
written policies governing the access, storage, duplication and release
of information from client records. Paragraph (a)(3) as proposed
requires the P&A system to obtain written consent from the client and/
or various other individuals, before releasing information on such
individuals to individuals not authorized to receive such information.
Proposed paragraphs (b) and (c) reflect the critical need for P&As
to disclose to other investigative and enforcement agencies information
about ongoing or potential abuse and neglect and specific individuals
affected. Frequently, a P&A will uncover, as part of its own
investigation or monitoring efforts, information about abuse and
[[Page 19718]]
neglect which must be addressed promptly by other agencies with
specialized State or Federal authority and/or greater resources, such
as State licensing and certification agencies, the Department of
Justice, and the police. In order for these agencies to act promptly
and effectively, they must be provided specific information about
individuals subject to abuse or neglect and the relevant circumstances.
We recommend that such information be disclosed where possible with
significant restrictions on redisclosure and only under those
circumstances in which the P&As have obtained the information pursuant
to the authority under the DD Act.
The NPRM redesignates subpart C as subpart D and revises the
material to update statutory and U.S. Code citations to conform to the
Developmental Disabilities Act of 2000 and update the wording of the
State Councils on Developmental Disabilities.
In Sec. 1386.30, State plan requirements, we are proposing in
paragraph (c) that the State plan must be submitted through the
Electronic Data Submission system rather than any other format. In
paragraph (c)(2) new language on the plan goals is being proposed. The
goals must be clearly expressed in terms of the area(s) of emphasis to
be covered, the types of activity to be undertaken (i.e., advocacy,
capacity building, systems change), the specific measures of progress
to be used (consumer, collaboration, improvement), and if applicable,
and not reflected otherwise, the extent to which unserved or
underserved individuals or groups, particularly from ethnic or racial
groups or geographic regions (e.g., rural) were the target of
assistance or services (see Section 125(c)(7) and Section 105(1)(C) of
the Act).
Paragraph (c)(3) proposes that the plan provide for the
establishment and maintenance of a Council and describe the membership
of the Council. This includes the requirement that the non-State agency
members of the Council shall be subject to term limits to ensure
rotating membership. Paragraph (d) proposes to require that the State
plan be updated as appropriate during the five-year plan period and
specifies that amendments to plans are required when substantive
changes are made, including changes under proposed paragraph (c)(2)
related to performance activities. In paragraph (e) we are proposing
time limits (no longer than five years) for demonstration projects and
activities performed by the Councils. A five-year time limit has been
established to coincide with the duration of the State plan. Paragraph
(a) is republished with updated statutory citations, and paragraphs (b)
and (f) are republished with updated statutory citations and editorial
changes.
In Sec. 1386.31 State plan submittal and approval, we are
proposing to revise paragraph (b) to require that the plan be submitted
to ADD rather than the appropriate regional office. Also, we are
proposing to revise the provision which requires the Governor or the
Governor's designee approval of the State plan or amendment. The
regulation proposes that the State plan or amendment must be approved
by the entity or individual authorized to do so under State law. This
requires States to determine who would approve the State plan or
amendment, which could be the Council, the Governor or the Governor's
designee. This authorization could be based on such actions as:
executive orders, proclamations, State statute, common law, or the
State constitution. In paragraph (c) we are proposing to indicate that
plans received during a quarter of the Federal fiscal year are approved
back to the first day of the quarter so costs incurred from that point
forward are approvable. Paragraphs (a) and (d) are proposed to be
republished without change.
In Sec. 1386.32, Periodic reports: Federal assistance to State
Developmental Disabilities Councils, we are proposing to revise the
title to read Sec. 1386.32 Periodic reports: Federal assistance to
State Councils on Developmental Disabilities. ADD is proposing to
revise paragraph (a) to clarify what financial report is required and
that the report shall be submitted semiannually. In Sec. 1386.32(b)
the reference to a statutory cite is proposed to be updated and
language is revised to clarify that State Council's Program Performance
Report (PPR) must be clearly expressed in terms of area(s) of emphasis
to be covered, the types of activity to be undertaken (i.e., advocacy,
capacity building, systems change), the measures of progress to be
used, and if applicable, and not stated elsewhere in the document, the
extent to which unserved or underserved individuals or groups,
particularly from ethnic or racial groups or geographic regions (e.g.,
rural), were the target of assistance or services (see Section
125(c)(7) and Section 105(1)(C)). Under paragraphs (b)(1)-(12), each
report must contain information about the progress made by the Council
in achieving its goals. In new section 1386.32(c) each State Council on
Developmental Disabilities must include in its Annual Program
Performance Report information on its achievement of the measures of
progress established pursuant to section 1385.5.
Section 1386.33, Protection of employee's interests, is revised to
update statutory cites and to provide clarity.
Section 1386.34, Designated State Agency, is revised to update
statutory cites and technical changes are made to provide clarity.
Section 1386.35, Allowable and non-allowable costs for Federal
Assistance to State Councils on Developmental Disabilities, is proposed
to be revised to update statutory cites with technical changes to
provide clarity.
Section 1386.36, Final disapproval of the State plan or plan
amendments, is revised to update statutory cites, remove references to
the HHS Regional Offices, and contains slight editorial changes.
Subpart E--Practice and Procedure for Hearings Pertaining to
State's Conformity and Compliance with Developmental Disabilities State
Plans, Reports and Federal Requirements, formerly subpart D, is being
revised to make technical changes and is republished in full.
Specifically under the General section, in section 1386.80
Definitions, we are proposing to add the terms Act and Department. In
section 1386.81, Scope of rules, we have updated the legal cites. No
changes are proposed to section 1386.82-1386.85 but these sections are
republished for the ease of public comment. Under the section on
Preliminary Matters--Notice and Parties, section 1386.90 is proposed to
be revised to update references to the State Councils on Developmental
Disabilities. Section 1386.91-1386.94 are proposed to be republished
unchanged. Under Hearing Procedures, sections 1386.100-1386.109 are
republished with technical edits made to sections 101 and 106. Finally
under the section on Post-hearing Procedures and Decisions, no change
is proposed to section 1386.110 but it is being republished for the
ease of public comments and sections 1386.111-1386.112 have been
revised to update legal cites.
PART 1387--PROJECTS OF NATIONAL SIGNIFICANCE
In Sec. 1387.1 General Requirements ADD is proposing to revise
paragraph (a) to indicate that all projects funded under this part must
be of national significance and serve or relate to individuals with
developmental disabilities to comply with section 161 of the Act as
well as section 162 of the Act. We are proposing to remove the current
regulatory language of paragraph (b) as the requirement for the
Secretary to publish the proposed priorities for PNS funding in the
Federal Register for
[[Page 19719]]
public comments is no longer required under the Act. Current regulatory
language of paragraph (c) will now become paragraph (b), indicating
that the requirements concerning format and content of the application,
submittal procedures, eligible applicants, and final priority areas
will be published in program announcements in the Federal Register.
Current regulatory language of paragraph (d), with minor edits, will
now become paragraph (c), indicating that in general, Projects of
National Significance provide technical assistance, collect data,
demonstrate exemplary and innovative models, disseminate knowledge at
the local and national levels, and otherwise meet the goals of Part E
of the Act, 42 U.S.C. 15081.
As the DD Act provided several new types of activities allowable
under Projects of National Significance we are proposing in paragraph
(d) to indicate that Projects of National Significance may engage in
one or more of the types of activities provided in Section 161(2) of
the statute.
As provided under new paragraph (e), funding for projects are to be
awarded to public and private non-profit entities for wide
applicability and impact. A request for proposal process shall solicit
applications from non-profits, institutions of higher learning, State
and local governments, and Tribal governments for PNS funding.
As provided under new paragraph (f), faith-based organizations are
eligible to apply for PNS funding, providing that the faith-based
organization meets the specific eligibility criteria contained in the
Program Announcement for a given Fiscal Year.
Program Announcements, requesting proposals, are published in the
Federal Register and posted on ADD's Web site at http://
www.acf.dhhs.gov/programs/add. A panel of experts shall review and
score each eligible application, received by the submission deadline,
based on the evaluation criteria in the Program Announcement. Final
funding decisions are made by the ADD Commissioner.
PART 1388--NATIONAL NETWORK OF UNIVERSITY CENTERS FOR EXCELLENCE IN
DEVELOPMENTAL DISABILITIES EDUCATION, RESEARCH, AND SERVICE (UCEDDS)
The Notice of Proposed Rulemaking for the UCEDDs includes a number
of changes to part 1388. The DD Act of 2000 included a significant
restructuring of subtitle D--National Network of University Centers for
Excellence in Developmental Disabilities Education, Research, and
Service. These changes have led to a proposed reorganization of the
regulation.
First, section 1388.1, Definitions, has been changed to Purpose.
Several of the terms under the proposed rule appear in proposed Sec.
1385.3 of the regulation and other terms were removed from the DD Act
of 2000 and therefore are no longer needed in the regulation. In the
case of the term ``Mandated Core Functions'', these are now more
clearly defined under section 1388.2. In addition, ``Research and
Evaluation'' is included as a Core Function separate from dissemination
of information. Both are included and described in Sec. 1388.2 of the
proposed regulation. Section 1388.1 Purpose, as proposed provides
information about the Centers, including their intended functions.
Sections 1388.2-1388.7 of the current regulation provides
information about `Program Criteria' for the UCEDDs in the following
areas: Purpose, Mission, Governance and Administration, Preparation of
Personnel, Services and Supports, Dissemination, and Peer Review. The
DD Act of 2000 deleted the provisions specifically associated with the
`Program Criteria' and the proposed changes to the regulation are
necessary to make it consistent with the DD Act of 2000.
The title of section 1388.2 has been changed to Core Functions. The
DD Act of 2000 now refers to Core Functions of Centers. This section
proposes to provide information about Core Functions, including the
provision of interdisciplinary pre-service preparation and continuing
education of students and fellows, provision of community services, the
carrying out of research, and dissemination of information.
The title of section 1388.3 has been changed to National Training
Initiatives on Critical and Emerging Needs. Centers have discretion in
selecting the activities they will pursue within the broad definition
of their purpose in the statute and therefore the current regulation
which defines the mission of the Centers as a group is not needed. ADD
proposes that revised section 1388.3 contain information about the
National Training Initiatives on Critical and Emerging Needs, which
replaces the Training Initiative Projects (TIPs) that appear in the
current regulation. Under this section, supplemental grant funds for
National Training Initiatives on Critical and Emerging Needs will be
reserved when each Center funded has received a grant award of at least
$500,000, adjusted for inflation. The critical and emerging needs
grants are to pay the Federal share of the cost of training initiatives
and will be awarded on a competitive basis for periods of not longer
than 5 years.
The title of section 1388.4 Program Criteria--Governance and
Administration, has been changed to Applications and provides
information about a Center's eligibility for grant awards through
applications as well as required application contents such as the five-
year plan describing the projected goal(s) related to one or more areas
of emphasis for each of the core functions; a number of assurances,
including how the Center will address the projected goals, carry out
goal-related activities, collaborate with the consumer advisory
committee comprised of a cross-section of stakeholders (e.g.,
individuals with developmental disabilities and related disabilities,
family members of individuals with developmental disabilities, a
representative of the State Protection and Advocacy System, a
representative of a self-advocacy organization, and representatives of
other relevant organizations), strategies for leveraging additional
public and private funds, director qualifications, and plans for
information dissemination. The applications section also includes
reference to the measures of progress, which now represent the
regulatory standards for the Centers. The program criteria of the
current regulation had been the basis for such standards. In addition,
the Applications section proposes to include information about the peer
review process, including the composition of the peer review groups.
Finally, information about the Federal Share under the proposed rule is
provided in the Applications section of the regulation. For the purpose
of determining the Federal share with respect to the project,
expenditures on that project by a political subdivision of a State or
by a public or private entity shall be subject to the provisions of 45
CFR part 93--New Restrictions on Lobbying (see section 1385.9 Grants
administration) and must be considered as an expenditure of the Center
under subtitle D.
Section 1388.5 of the proposed rule has been revised to address the
five-year plan and annual report. Provisions on `Program Criteria--
Preparation of Personnel' are no longer needed in this section because
of changes in the DD Act of 2000 and changes made in other sections of
this proposed rule. Under the proposal, section 1388.5 addresses the
five-year plan and annual report and includes requirements for Centers
to report on their progress. The Annual Report must be submitted by
July 31st of each year and include information on the progress made in
achieving the
[[Page 19720]]
projected goals, proposed revisions to the goals, and a description of
successful efforts to leverage funds. The timeframe for the Annual
Report is tied to the UCEDDs fiscal and reporting cycle. The five-year
plan must be amended to reflect changes made to the measures of
progress established for any year.
We propose to delete the remaining paragraphs in section 1388 to
reflect the DD Act of 2000 and changes made elsewhere in the proposed
rule.
Amended Proposed Regulations, 45 CFR Parts 1385, 1386, 1387, and 1388
The Administration on Developmental Disabilities presents 45 CFR
parts 1385, 1386, 1387, and 1388 as an amended whole in response to
numerous requests by direct consumers, family members of individuals
with developmental disabilities, members of advocacy organizations, and
the Developmental Disabilities Network. Reprinting the regulation in
its entirety to include the proposed new regulations and the current
regulation will assist these individuals in responding to the proposed
rule, especially the proposed measures of progress.
Impact Analysis
Executive Order 12866
Executive Order 12866 requires that regulations be drafted to
ensure that they are consistent with the priorities and principles set
forth in Executive Order 12866. The Department has determined that this
proposed rule is consistent with these priorities and principles.
Executive Order 12866 encourages agencies, as appropriate, to
provide the public with meaningful participation in the regulatory
process. The proposed rule seeks to implement the Developmental
Disabilities Act of 2000 and especially provisions of the Act
addressing program accountability and indicators of progress. In
developing this regulation, we considered input we received from the
developmental disabilities community, especially in relation to our
extensive discussion on the issue of performance outcomes with the
grantees of the ADD network (State Councils on Developmental
Disabilities, P&As, UCEDDs, and the national organizations that
represent them: The National Association of Developmental Disability
Councils (NADDC), the National Association of Protection and Advocacy
Systems (NAPAS), and the Association of University Centers on
Disabilities (AUCD). In addition, we are providing a 60 day public
comment period.
Regulatory Flexibility Analysis
The Secretary certifies under 5 U.S.C. 605(b), the Regulatory
Flexibility Act (Pub. L. 96-354), that this regulation will not have a
significant economic impact on a substantial number of small entities.
The primary impact of this regulation is on State Councils on
Developmental Disabilities, State Protection and Advocacy Systems, and
UCEDDs. P&As are administered by small nonprofits. This regulation will
support the work of the P&As by providing guidance regarding access to
service providers and records of individuals in order to investigate
potential abuse and neglect. Service providers will be impacted if a
complaint is made against them. Similarly, this regulation will support
the work of UCEDDs by providing guidance on the administration of the
program, especially the measures of progress, which now represent the
regulatory standards for the UCEDDs. The regulation does not have a
significant economic impact on these entities. We estimate an average
impact of $300 per grantee, resulting in a total cost across the DD
network of less than $100,000.
This rule is considered a ``significant regulatory action'' as it
relates to service providers and the P&As. If a complaint is made
against a service provider and the P&A investigates potential abuse and
neglect, it may result in adversely affecting those service providers
in a material way, (section 3(f)(1) of Executive Order 12866).
Therefore, this proposed regulation has been reviewed by the Office of
Management and Budget.
Paperwork Reduction Act of 1995
Sections 1386.22, 1386.32, and 1388.5 contain information
collection requirements. In Section 1386 of the NPRM, the State Council
on Developmental Disabilities Program Performance Report and the
Protection and Advocacy Statement of Goals and Priorities required
reinstatement from OMB. Further changes to these reports will be
required once the indicators of progress are established through final
regulations. For the Protection and Advocacy Program Performance Report
in Section 1386 of the NPRM, the OMB Standard Form--PPR will be used.
Recordkeeping and reporting requirements for the UCEDDs (Part 1388)
include the submission of an approved grant application (section
154(a)(2) of the Act (42 U.S.C. 15064)) and a new annual report
(section 154(e)). The application for core funding uses OMB Standard
Form 424--Application for Federal Assistance and Budget Information.
The annual report will require a new reporting format that will address
the satisfaction of individuals with developmental disabilities with
advocacy, capacity building, and systemic change activities; the extent
to which the advocacy, capacity building, and systemic change
activities provided results through improvements; and the extent to
which collaboration was achieved in the areas of advocacy, capacity
building and systemic change activities.
Reporting and Recordkeeping Requirements In Part 1386 and 1388 of the NPRM
----------------------------------------------------------------------------------------------------------------
Average burden
Expires Annual number response Annual burden
of respondents (hours) hours
----------------------------------------------------------------------------------------------------------------
1386.22(a) SF-PPR..................... 0970-0334 06/30/2009 57 44 2,508
1386.22(c) P&A SGP Reinstatement...... 0980-0270 11/30/2009 57 44 2,508
1386.30(c) Council State Plan......... 0980-0162 05/31/2009 55 80 4,400
1386.32(b) Council PPR Reinstatement.. 0980-0172 02/28/2009 55 44 2,420
1386 32(a) Council Financial Status
Report (ADD-02B):
ADD-02 Council.................... 0980-0212 05/31/2009 55 8 440
1388.5(b) UCEDD Annual Report..... 0970-0289 08/31/2008 67 200 13,400
----------------------------------------------------------------------------------------------------------------
The Administration for Developmental Disabilities will consider
comments by the public on these collections of information in the
following areas:
[[Page 19721]]
(a) Evaluating whether the proposed collection(s) is (are)
necessary for the proper performance of the functions of ADD, including
whether the information will have practical utility;
(b) Evaluating the accuracy of the ADD's estimate of the burden of
the proposed collection(s) of information, including the validity of
the methodology and assumptions used;
(c) Enhancing the quality, usefulness and clarity of the
information to be collected; and
(d) Minimizing the burden of the collection of information on those
who are to respond, including through the use of appropriate automated,
electronic, mechanical, or other technology, e.g., permitting
electronic submission of responses.
OMB is required to make a decision concerning the collection(s) of
information contained in these proposed regulations between 30 and 60
days after publication of this document in the Federal Register.
Therefore, a comment is best assured of having its full effect if OMB
receives it within 30 days of publication. This does not affect the
deadline for the public to comment to the Department on the NPRM.
Written comments to OMB for the proposed information collection should
be sent directly to OMB either by FAX to 202-395-6974 or by e-mail to
OIRA_submission@omb.eop.gov, attn: desk officer for the Administration
for Children and Families.
Unfunded Mandates Reform Act
Section 202 of the Unfunded Mandates Reform Act of 1995 (Unfunded
Mandates Act) requires that a covered agency prepare a budgetary impact
statement before promulgating a rule that includes any Federal mandate
that may result in expenditures by State, local and Tribal governments,
in the aggregate, or by the private sector, of $100 million, adjusted
for inflation, or more in any one year.
If a covered agency must prepare a budgetary impact statement,
section 205 further requires that it select the most cost-effective and
least burdensome alternatives that achieves the objectives of the rule
and consistent with the statutory requirements. In addition, section
203 requires a plan for informing and advising any small government
that may be significantly or uniquely impacted by a proposed rule.
We have determined that this rule does not result in the
expenditure by State, local, and Tribal government in the aggregate, or
by the private sector of more than $100 million in any one year.
Congressional Review
This rule is not a major rule as defined in 5 U.S.C.Sec. 804(2).
Assessment of Federal Regulations and Policies on Families
Section 654 of the Treasury and General Government Appropriations
Act of 1999 requires Federal agencies to determine whether a policy or
regulation may affect family well being. If the agency's conclusion is
affirmative, then the agency must prepare an impact assessment
addressing seven criteria specified in the law. These regulations do
not have an impact on family well being as defined in the legislation.
Executive Order 13132
Executive Order 13132 on ``federalism'' was signed August 4, 1999.
The purposes of the Order are: ``. . . to guarantee the division of
governmental responsibilities between the national government and the
States that was intended by the Framers of the Constitution, to ensure
that the principles of federalism established by the Framers guide the
executive departments and agencies in the formulation and
implementation of policies, and to further the policies of the Unfunded
Mandates Reform Act. . . .''
The Department certifies that this rule does not have a substantial
direct effect on States, on the relationship between the Federal
government and the States, or on the distribution of power and
responsibilities among the various levels of government.
ADD is not aware of any specific State laws that would be preempted
by the adoption of the regulation in subpart C of 45 CFR part 1386. ADD
would welcome comments from any State whose laws would be in conflict
with the requirements of the proposed regulation or whose laws require
modification to establish compliance with requirements of the proposed
regulation, States should alert ADD in their comments of the specific
provisions of the NPRM that would require delay in the effective dates
in order to bring State laws into conformance. ADD will consider
delaying the effective date of some provisions in the final regulation
if States must modify legislation or enact new legislation to bring
their laws into conformance with the new regulation. The rule does not
impose unfunded mandates.
This proposed rule does contain regulatory policies with federalism
implications that require specific consultation with State or local
elected officials. For example, compliance with the indicators of
progress is mandatory for State programs. However, prior to the
development of the rule, the Administration on Developmental
Disabilities consulted with State Developmental Disabilities Councils,
P&As, and UCEDDs to minimize any substantial direct effect on them and
indirectly on States.
List of Subjects
45 CFR Part 1385
Disabled, Grant programs/education, Grant programs/social programs,
Reporting and recordkeeping requirements.
45 CFR Part 1386
Disabled, Administrative practice and procedures, Grant programs--
education, Grant programs--social programs, Reporting and recordkeeping
requirements.
45 CFR Part 1387
Administrative practice and procedure, Grant programs--education,
Grant programs--social programs, Individuals with disabilities.
45 CFR Part 1388
Colleges and Universities, Grant programs/education, Grant
programs/social programs/University Centers for Excellence in
Developmental Disabilities Education, Research and Services.
(Catalog of Federal Domestic Assistance Program, Nos. 93.630
Developmental Disabilities Basic Support and 93.632 Developmental
Disabilities--University Centers for Excellence)
Dated: November 20, 2007.
Daniel C. Schneider,
Acting Assistant Secretary for Children and Families.
Approved: November 26, 2007.
Michael O. Leavitt,
Secretary, Department of Health and Human Services.
Editorial Note: This document was received at the Office of the
Federal Register on April 3, 2008.
For reasons set forth in the preamble, The Department of Health and
Human Services proposes to amend subchapter I, chapter XIII, of title
45 of the Code of Federal Regulations as set forth below.
1. Revise part 1385 to read as follows:
PART 1385--REQUIREMENTS APPLICABLE TO THE DEVELOPMENTAL
DISABILITIES PROGRAM
Section Contents
Sec.
[[Page 19722]]
1385.1 General.
1385.2 Purpose of the regulations.
1385.3 Definitions.
1385.4 Rights of individuals with developmental disabilities.
1385.5 Program accountability and indicators of progress.
1385.6 Employment of individuals with disabilities.
1385.7 Reports to the Secretary.
1385.8 Formula for determining allotments.
1385.9 Grants administration requirements.
Authority: 42 U.S.C. 15001 et seq.
Sec. 1385.1 General.
Except as specified in Sec. Sec. 1385.4 and 1385.5, the
requirements in this part are applicable to the following programs and
projects:
(a) Federal Assistance to State Councils on Developmental
Disabilities;
(b) Protection and Advocacy of Individual Rights;
(c) Projects of National Significance; and
(d) National Network of University Centers for Excellence in
Developmental Disabilities Education, Research, and Service.
Sec. 1385.2 Purpose of the regulations.
These regulations implement the Developmental Disabilities
Assistance and Bill of Rights Act of 2000 (42 U.S.C. 15001 et seq.).
Sec. 1385.3 Definitions.
The following definitions apply:
ACF. The term ``ACF'' means the Administration for Children and
Families within the Department of Health and Human Services.
Act. The term ``Act'' means the Developmental Disabilities
Assistance and Bill of Rights Act of 2000 (42 U.S.C. 15001 et seq.).
Accessibility. The term ``Accessibility'' means that programs
funded under the DD Act of 2000 and facilities which are used in those
programs meet applicable requirements of 45 CFR part 84 and the
Americans with Disabilities Act of 1990.
ADD. ``ADD'' means the Administration on Developmental
Disabilities, within the Administration for Children and Families.
ADD Network. ``ADD Network'' means the State Councils on
Developmental Disabilities, the Protection and Advocacy System, and the
University Centers for Excellence in Developmental Disabilities
Education, Research, and Service.
Advocacy activities. The term ``Advocacy activities'' means active
support of policies and practices that promote self-determination and
inclusion in the community and workforce for individuals with
developmental disabilities and their families.
Areas of emphasis. The term ``areas of emphasis'' means the areas
related to quality assurance activities, education activities and early
intervention activities, child care-related activities, health-related
activities, employment-related activities, housing-related activities,
transportation-related activities, recreation-related activities, and
other services available or offered to individuals in a community,
including formal and informal community supports that affect their
quality of life.
Assistive technology device. The term ``assistive technology
device'' means any item, piece of equipment, or product system, whether
acquired commercially, modified or customized, that is used to
maintain, increase amount of or improve quality of the functional
capabilities of individuals with developmental disabilities.
Assistive technology service. The term ``assistive technology
service'' means any service that directly assists an individual with a
developmental disability in the selection, acquisition, or use of an
assistive technology device. Such term includes: conducting an
evaluation of the needs of an individual with a developmental
disability, including a functional evaluation of the individual in the
individual's environment; purchasing, leasing, or otherwise providing
for the acquisition of an assistive technology device by an individual
with a developmental disability; selecting, designing, fitting,
customizing, adapting, applying, maintaining, repairing or replacing an
assistive technology device; coordinating and using another therapy,
intervention, or service with an assistive technology device, such as a
therapy, intervention, or service associated with an education or
rehabilitation plan or program; providing training or technical
assistance for an individual with a developmental disability, or, where
appropriate, a family member, guardian, advocate, or authorized
representative of an individual with a developmental disability; and
providing training or technical assistance for professionals (including
individuals providing education and rehabilitation services),
employers, or other individuals who provide services to, serve, employ,
or are otherwise substantially involved in the major life functions of
an individual with developmental disabilities.
Capacity building activities. The term ``capacity building
activities'' means a system for sustaining and expanding the successful
delivery of services, support and other assistance to individuals with
developmental disabilities and their families.
Center. The term ``Center'' means a University Center for
Excellence in Developmental Disabilities Education, Research, and
Service (UCEDD) established under subtitle D of the DD Act of 2000.
Child care-related activities. The term ``child care-related
activities'' means advocacy, capacity building, and systemic change
activities that result in families of children with developmental
disabilities having access to and use of child care services, including
before-school, after-school, and out-of-school services, in their
communities.
Collaboration. The term ``collaboration'' means the use of
interagency agreements and similar mechanisms by agencies under the Act
(State Developmental Disabilities Councils, the Protection and Advocacy
agencies and the University Centers for Excellence in Developmental
Disabilities Education Research, and Service). These agencies may work
among themselves and with private individuals, groups, and
organizations and State and local government agencies to foster
cooperation in achieving the purposes of the Act.
Commissioner. The term ``Commissioner'' means the Commissioner of
the Administration on Developmental Disabilities, Administration for
Children and Families, Department of Health and Human Services, or his
or her designee.
Culturally competent. The term ``culturally competent,'' means that
services, supports, or other assistance that are conducted or provided
in a manner that is responsive to the beliefs, interpersonal styles,
attitudes, language, and behaviors of individuals who are receiving the
services, supports or other assistance, and in a manner that has the
greatest likelihood of ensuring their maximum participation in the
program involved.
Department. The term ``Department'' means the U.S. Department of
Health and Human Services.
Developmental disability. The term ``developmental disability,'' as
determined on a case by case basis, means a severe, chronic disability
of an individual that--
(1) Is attributable to a mental or physical impairment or
combination of mental and physical impairments;
(2) Is manifested before the individual attains age 22;
(3) Is likely to continue indefinitely;
(4) Results in substantial functional limitations in three or more
of the following areas of major life activity--
(i) Self-care;
[[Page 19723]]
(ii) Receptive and expressive language;
(iii) Learning;
(iv) Mobility;
(v) Self-direction;
(vi) Capacity for independent living; and
(vii) Economic self-sufficiency.
(5) Reflects the individual's need for a combination and sequence
of special, interdisciplinary or generic services, individualized
supports, or other forms of assistance that are of lifelong or extended
duration and are individually planned and coordinated.
(6) An individual from birth to age nine, inclusive, who has a
substantial developmental delay or specific congenital or acquired
condition, may be considered to have a developmental disability without
meeting three or more of the criteria described in (A)(1) through (5),
if the individual, without services and supports, has a high
probability of meeting those criteria later in life.
Early intervention activities. The term ``early intervention
activities'' means advocacy, capacity building, and systemic change
activities provided to infants and young children described in the
definition of ``developmental disability'' and their families to
enhance the development of the individuals to maximize their potential,
and the capacity of families to meet the special needs of the
individuals.
Education activities. The term ``education activities'' means
advocacy, capacity building, and systemic change activities that result
in individuals with developmental disabilities being able to access
appropriate supports and modifications when necessary, to maximize
their educational potential, to benefit from lifelong educational
activities, and to be integrated and included in all facets of student
life.
Employment-related activities. The term ``employment-related
activities'' means advocacy, capacity building, and systemic change
activities that result in individuals with developmental disabilities
acquiring, retaining, or advancing in paid employment, including
supported employment or self-employment, in integrated settings in a
community.
Family support services. The term ``family support services'' means
services, supports, and other assistance, provided to families with a
member or members who have developmental disabilities, that are
designed to: strengthen the family's role as primary caregiver; prevent
inappropriate out-of-the-home placement of the members and maintain
family unity; and reunite, whenever possible, families with members who
have been placed out of the home. This term includes respite care,
provision of rehabilitation technology and assistive technology,
personal assistance services, parent training and counseling, support
for families headed by aging caregivers, vehicular and home
modifications, and assistance with extraordinary expenses associated
with the needs of individuals with developmental disabilities.
Fiscal year. The term ``fiscal year'' means the Federal fiscal year
unless otherwise specified.
Governor. The term ``Governor'' means the chief executive officer
of a State, as that term is defined in the Act, or his or her designee
who has been formally designated to act for the Governor in carrying
out the requirements of the Act and the regulations.
Health-related activities. The term ``health-related activities''
means advocacy, capacity building, and systemic change activities that
result in individuals with developmental disabilities having access to
and use of coordinated health, dental, mental health, and other human
and social services, including prevention activities, in their
communities.
Housing-related activities. The term ``housing-related activities''
means advocacy, capacity building, and systemic change activities that
result in individuals with developmental disabilities having access to
and use of housing and housing supports and services in their
communities, including assistance related to renting, owning, or
modifying an apartment or home.
Inclusion. The term ``inclusion,'' means the acceptance and
encouragement of the presence and participation of individuals with
developmental disabilities by individuals without disabilities in
social, educational, work, and community activities that enable
individuals with developmental disabilities to have friendships and
relationships with individuals of their own choice; live in homes close
to community resources with regular contact with individuals without
disabilities in their communities; enjoy full access and active
participation in the same community activities and types of employment
as individuals without disabilities; and take full advantage of their
integration into the same community as individuals without
disabilities, living, learning, working, and enjoying life in regular
contact with individuals without disabilities.
Indicators of progress. The term ``indicators of progress'' means
the grantee's compliance with its own self-selected, ADD approved,
measures of progress.
Individualized supports. The term ``individualized supports'' means
supports that: Enable an individual with a developmental disability to
exercise self-determination, be independent, be productive, and be
integrated and included in all facets of community life; designed to
enable such individual to control such individual's environment,
permitting the most independent life possible; and prevent placement
into a more restrictive living arrangement than is necessary and enable
such individual to live, learn, work, and enjoy life in the community;
and include early intervention services, respite care, personal
assistance services, family support services, supported employment
services support services for families headed by aging caregivers of
individuals with developmental disabilities, and provision of
rehabilitation technology and assistive technology, and assistive
technology services.
Integration. The term ``integration,'' means exercising the equal
rights of individuals with developmental disabilities to access and use
the same community resources as are used by and available to other
individuals.
Measures of progress. The term ``measures of progress'' means the
grantee's standards of performance that they have developed pursuant to
section 1385.5.
Not-for-profit. The term ``not-for-profit,'' used with respect to
an agency, institution or organization, means an agency, institution,
or organization that is owned or operated by one or more corporations
or associations, no part of the net earnings of which inures, or may
lawfully inure, to the benefit of any private shareholder or
individual.
Personal assistance services. The term ``personal assistance
services'' means a range of services provided by one or more
individuals designed to assist an individual with a disability to
perform daily activities, including activities on or off a job that
such individual would typically perform if such individual did not have
a disability. Such services shall be designed to increase such
individual's control in life and ability to perform everyday
activities, including activities on or off a job.
Prevention activities. The term ``prevention activities'' means
activities that address the causes of developmental disabilities and
the exacerbation of functional limitation, such as activities that:
Eliminate or reduce the factors that cause or predispose individuals to
developmental disabilities or that
[[Page 19724]]
increase the prevalence of developmental disabilities; increase the
early identification of problems to eliminate circumstances that create
or increase functional limitations; and mitigate against the effects of
developmental disabilities throughout the lifespan of an individual.
Productivity. The term ``productivity'' means engagement in income-
producing work that is measured by increased income, improved
employment status, or job advancement, or engagement in work that
contributes to a household or community.
Protection and Advocacy Agency. The term ``Protection and Advocacy
Agency'' means the organization or agency designated in a State to
administer and operate a protection and advocacy (P&A) system for
individuals with developmental disabilities. A P&A system is authorized
to investigate incidents of abuse and neglect regarding persons with
developmental disabilities and the rights of such individuals. The P&A
may provide information and referral to programs and services
addressing the needs of such individuals. The Protection and Advocacy
agency also shall provide advocacy services under other Federal
programs and undertake the other activities authorized therein, except
when participation in such program is inconsistent with its duties
under the Act.
Quality assurance activities. The term ``quality assurance
activities'' means advocacy, capacity building, and systemic change
activities that result in improved consumer and family-centered quality
assurance and that result in systems of quality assurance and consumer
protection that include monitoring of services, supports, and
assistance provided to an individual with developmental disabilities
that ensures that the individual will not experience abuse, neglect,
sexual or financial exploitation, or violation of legal or human
rights; and will not be subject to the inappropriate use of restraints
or seclusion; include training in leadership, self-advocacy, and self-
determination for individuals with developmental disabilities, their
families, and their guardians to ensure that those individuals will not
experience abuse, neglect, sexual or financial exploitation, or
violation of legal or human rights; and will not be subject to the
inappropriate use of restraints or seclusion; or include activities
related to interagency coordination and systems integration that result
in improved and enhanced services, supports, and other assistance that
contribute to and protect the self-determination, independence,
productivity, and integration and inclusion in all facets of community
life of individuals with developmental disabilities.
Recreation-related activities. The term ``recreation-related
activities'' means advocacy, capacity building, and systemic change
activities that result in individuals with developmental disabilities
having access to and use of recreational, leisure, and social
activities, in their communities.
Rehabilitation technology. The term ``rehabilitation technology''
means the systematic application of technologies, engineering
methodologies, or scientific principles to meet the needs of, and
address the barriers confronted by individuals with developmental
disabilities in areas that include education, rehabilitation,
employment, transportation, independent living, and recreation. Such
terms include rehabilitation engineering, and the provision of
assistive technology devices and assistive technology services.
Required planning documents. The term ``required planning
documents'' means the State plans required by Sec. 1386.30 of this
part for the State Council on Developmental Disabilities; the Annual
Statement of Goals and Priorities required by Sec. 1386.22(c) for
P&As; and the Five-Year plan required by Sec. 1388.5(a)(4) for UCEDDs.
Secretary. The term ``Secretary'' means the Secretary of Health and
Human Services.
Self-determination activities. The term ``self-determination
activities'' means activities that result in individuals with
developmental disabilities, with appropriate assistance, having the
ability and opportunity to communicate and make personal decisions; the
ability and opportunity to communicate choices and exercise control
over the type and intensity of services, supports, and other assistance
the individuals receive; the authority to control resources to obtain
needed services, supports, and other assistance; opportunities to
participate in, and contribute to, their communities; and support,
including financial support, to advocate for themselves and others to
develop leadership skills through training in self-advocacy to
participate in coalitions, to educate policymakers, and to play a role
in the development of public policies that affect individuals with
developmental disabilities.
State. The term ``State'', includes, in addition to each of the
several States of the United States, the District of Columbia, the
Commonwealth of Puerto Rico, the United States Virgin Islands, Guam,
American Samoa, and the Commonwealth of the Northern Mariana Islands.
State Council on Developmental Disabilities. The term ``State
Council on Developmental Disabilities'' means a Council established
under Section 125 of the DD Act.
Supported employment services. The term ``supported employment
services'' means services that enable individuals with developmental
disabilities to perform competitive work in integrated work settings or
work for individuals for whom competitive employment has been
interrupted or intermittent as a result of significant disabilities,
and who, because of the nature and severity of their disabilities, need
intensive supported employment services or extended services in order
to perform such work.
Systemic change activities. The term ``systemic change activities''
means a sustainable, transferable and replicable change in some aspect
of service or support availability, design or delivery that promotes
positive or meaningful outcomes for individuals with developmental
disabilities and their families.
Transportation-related activities. The term ``transportation-
related activities'' means advocacy, capacity building, and systemic
change activities that result in individuals with developmental
disabilities having access to and use of transportation.
UCEDDs. The term ``UCEDD'' means University Centers for Excellence
in Developmental Disabilities Education, Research, and Service, also
known by the term ``Center'' under Section 102(5) of the Act.
Unserved and underserved. The term ``unserved and underserved''
includes populations such as individuals from racial and ethnic
minority backgrounds, disadvantaged individuals, individuals with
limited English proficiency, individuals from underserved geographic
areas (rural or urban) and specific groups of individuals within the
population of individuals with developmental disabilities, including
individuals who require assistive technology in order to participate in
community life.
Sec. 1385.4 Rights of individuals with developmental disabilities.
(a) Section 109 of the Act, Rights of Individuals with
Developmental Disabilities (42 U.S.C. 15009), is applicable to the
State Councils on Developmental Disabilities.
(b) In order to comply with Section 124(c)(5)(H) of the Act (42
U.S.C. 15024(c)(5)(H)), regarding the rights of
[[Page 19725]]
individuals with developmental disabilities, the State participating in
the Developmental Disabilities Council program must meet the
requirements of 45 CFR 1386.30(f)(2).
(c) Applications from UCEDDs also must contain an assurance that
the human rights of individuals assisted by this program will be
protected consistent with Section 101(c) (see Section 154(a)(3)(D) of
the Act).
Sec. 1385.5 Program accountability and indicators of progress.
(a) Program Accountability Process. (1) The required planning
document and updates must classify under one or more areas of emphasis
(as defined in section 1385.3 of this part) each of the goals related
to advocacy, capacity building, and systemic change activities the
State Council on Developmental Disabilities, P&A, or UCEDD will be
pursuing during each of the years covered by the document. For UCEDDs,
goal activities also must be classified in terms of mandated core
functions.
(2) State Councils on Developmental Disabilities, P&As and UCEDDs
must state in the required planning document the measures of progress
to measure consumer satisfaction, collaboration, or improvement for
each established goal under each selected area of emphasis during any
year covered by the planning document. The measures of progress
developed by State Councils, P&As, and UCEDDs must be able to, over
time, demonstrate whether the grantee has achieved progress in meeting
the goals of the Act through its advocacy, capacity building, and
systemic change activities.
(3) Measures of progress included in the required planning
document, or in revisions to such document, shall meet the requirements
under this part. In the event that one or more of the measures of
progress included in the required planning document, or an amendment to
the document, do not meet the requirements under this part, the
Commissioner shall decline to accept the planning document, or the
revision to such document, submitted by the grantee.
(4) Each State Council on Developmental Disabilities pursuant to
section 1386.32(b), P&A pursuant to Sec. 1386.22(a), and UCEDD
pursuant to Sec. 1388.5(a)(4) must report the results of the measures
of progress measuring consumer satisfaction, collaboration, or
improvement for each area of emphasis under which a goal has been
established for the year on which it is reporting. The report must
include information necessary for the Secretary to comply with the Act
and other information required by the applicable regulation.
(b) Measures of Progress. For each of the areas of emphasis under
which a grantee has established a goal(s), it shall meet approved
annual measures for successful achievement of progress.
(c) Indicators of Progress. For each of the areas of emphasis under
which a State Council on Developmental Disabilities, a P&A, or a UCEDD
has classified activities, the indicators of progress shall be the
achievement of the measures of progress they have established pursuant
to this section for the year on which it is reporting. Each State
Council on Developmental Disabilities, P&A, and UCEDD is required to
meet the indicators of progress for each of the areas of emphasis in
which it has classified activities for the year on which it is
reporting.
(d) Measures of Consumer Satisfaction. Each State Council on
Developmental Disabilities, P&A, and UCEDD must:
(1) establish criteria in its planning document, or any revision,
on the level of consumer satisfaction to be attained for each area of
emphasis for which goals are identified, and
(2) track consumer satisfaction for each area of emphasis for which
goals are identified through the end of each year. If, for any reason,
a State Council on Developmental Disabilities, P&A, or UCEDD does not
fully perform a planned activity related to a goal under an area of
emphasis, as appropriate, the consumer satisfaction with the activity
shall be measured by the grantee on the basis of the portion of the
activity performed.
(e) Measures of Collaboration. (1) Each State Council on
Developmental Disabilities, P&A, and UCEDD must identify in its
planning document, and any revision, the collaborative activities that
it will implement for each area of emphasis under which it has
identified one or more goals. Each UCEDD also must identify the
collaborative activities it will implement with UCEDDs in other States
which are pursuing similar activities under the same areas of emphasis.
(2) Collaboration by each State Council on Developmental
Disabilities, P&A, and UCEDD with other grantees within the State must
include the following:
(i) A meeting with the other grantees in the State on the proposed
collaboration and on the implementation of the agreed upon
collaborative activities;
(ii) A Memorandum of Understanding on the collaboration initiative
agreed upon by each of the other grantees in the State, signed by the
administering officials of the State Council, P&A, and UCEDD.
(f) Measures of Improvement. (1) Each State Council on
Developmental Disabilities, P&A, and UCEDD must establish for each year
covered by the planning document the measures of improvement it will
attain in each area of emphasis for which goals have been identified by
assessing the extent to which grantee activities have enabled
individuals with developmental disabilities to:
(i) Make choices and exert control over the type, intensity, and
timing of services, supports and assistance in the area of emphasis;
(ii) Participate in the full range of community life associated
with the area of emphasis with persons of the individual's choice; and
(iii) Access services, supports and assistance in the area of
emphasis in a manner that ensures that such individuals are free from
abuse, neglect, sexual and financial exploitation, violation of legal
and human rights, and the inappropriate use of restriction and
seclusion.
(2) State Councils on Developmental Disabilities, P&As, and UCEDDs
may adopt additional measures of progress to assess their performance
during a year.
Sec. 1385.6 Employment of individuals with disabilities.
Each grantee which receives Federal funding under the Act must meet
the requirements of Section 107 of the Act (42 U.S.C. 15007) regarding
affirmative action. The grantee must take affirmative action to employ
and advance in employment and otherwise treat qualified individuals
with disabilities without discrimination based upon their physical or
mental disability in all employment practices such as the following:
advertising, recruitment, employment, rates of pay or other forms of
compensation, selection for training, including apprenticeship,
upgrading, demotion or transfer, and layoff or termination. This
obligation is in addition to the requirements of 45 CFR part 84,
subpart B, prohibiting discrimination in employment practices on the
basis of disability in programs receiving assistance from the
Department. Recipients of funds under the Act also may be bound by the
provisions of the Americans with Disabilities Act of 1990 (Pub. L. 101-
336, 42 U.S.C. 12101 et seq.) with respect to employment of individuals
with disabilities. Failure to comply with Section 107 of the Act may
result in loss of Federal funds under the
[[Page 19726]]
Act. If a compliance action is taken, the State will be given
reasonable notice and an opportunity for a hearing as provided in
subpart E of 45 CFR part 1386.
Sec. 1385.7 Reports of the Secretary.
All grantee submission of plans, applications and reports must
label goals, activities and results clearly in terms of the following:
area of emphasis, type of activity (advocacy, capacity building,
systemic change), and categories of measures of progress.
Sec. 1385.8 Formula for determining allotments.
The Commissioner will allocate funds appropriated under the Act for
the State Councils on Developmental Disabilities and the P&As on the
following basis:
(a) Two-thirds of the amount appropriated will be allotted to each
State according to the ratio the population of each State bears to the
population of the United States. This ratio is weighted by the relative
per capita income for each State. The data used to compute allotments
are supplied by the U.S. Department of Commerce for the three most
recent consecutive years for which satisfactory data are available.
(b) One-third of the amount appropriated will be allotted to each
State on the basis of the relative need for services of persons with
developmental disabilities. The relative need is determined by the
number of persons receiving benefits under the Childhood Disabilities
Beneficiary Program [(Section 202(d)(1)(B)(ii) of the Social Security
Act), (42 U.S.C. 402(d)(1)(B)(ii)].
Sec. 1385.9 Grants administration requirements.
(a) The following parts of title 45 CFR apply to grants funded
under parts 1386 and 1388 of this chapter, and to grants for Projects
of National Significance under Section 162 of the Act (42 U.S.C.
15082).
45 CFR Part 16--Procedures of the Departmental Grant Appeals Board.
45 CFR Part 46--Protection of Human Subjects.
45 CFR Part 74--Administration of Grants.
45 CFR Part 76--Governmentwide Debarment and Suspension
(Nonprocurement) and Governmentwide Requirements for Drug-Free
Workplace.
45 CFR Part 80--Nondiscrimination under Programs Receiving Federal
Assistance through the Department of Health and Human Services--
Effectuation of title VI of the Civil Rights Act of 1964.
45 CFR Part 81--Practice and Procedures--Practice and Procedure for
Hearings Act under Part 80 of this title.
45 CFR Part 84--Nondiscrimination on the Basis of Handicap in
Programs and Activities Receiving or Benefiting from Federal Financial
Assistance.
45 CFR Part 86--Nondiscrimination on the Basis of Sex in Education
Programs and Activities Receiving or Benefiting from Federal Financial
Assistance.
45 CFR Part 91--Nondiscrimination on the Basis of Age in Programs
or Activities Receiving Federal Financial Assistance from HHS.
45 CFR Part 92--Uniform Administrative Requirements for Grants and
Cooperative Agreements to State and Local Governments.
45 CFR Part 93--New restrictions on Lobbying.
(b) The Departmental Appeals Board also has jurisdiction over
appeals by any grantee that has received grants under the UCEDD
programs or for Projects of National Significance. The scope of the
Board's jurisdiction concerning these appeals is described in 45 CFR
part 16.
(c) The Departmental Appeals Board also has jurisdiction to decide
appeals brought by the States concerning any disallowances taken by the
Commissioner with respect to specific expenditures incurred by the
States or by contractors or subgrantees of States. This jurisdiction
relates to funds provided under the two formula programs--subtitle B of
the Act--Federal Assistance to State Councils on Developmental
Disabilities, and subtitle C of the Act--Protection and Advocacy of
Individual Rights. Appeals filed by States shall be decided in
accordance with 45 CFR part 16.
(d) In making audits and examination to any books, documents,
papers, and transcripts of records of State Councils on Developmental
Disabilities, the UCEDDs and the Projects of National Significance
grantees and subgrantees, as provided for in 45 CFR part 74 and part
92, the Department will keep information about individual clients
confidential to the maximum extent permitted by law and regulations.
(e)(1) The Department or other authorized Federal officials may
access client and case eligibility records or other records of a P&A
system for audit purposes, and for purposes of monitoring system
compliance pursuant to Section 103(b) of the Act. However, such
information will be limited pursuant to Section 144(c) of the Act. No
personal identifying information such as name, address, and social
security number will be obtained. Only eligibility information will be
obtained regarding the type and level of disability of individuals
being served by the P&A and the nature of the issue concerning which
the system represented an individual.
(2) Notwithstanding paragraph (e)(1) of this section, if an audit,
monitoring review, evaluation, or other investigation by the Department
produces evidence that the system has violated the Act or the
regulations, the system will bear the burden of proving its compliance.
The system's inability to establish compliance because of the
confidentiality of records will not relieve it of this responsibility.
The P&A may elect to obtain a release regarding personal information
and privacy from all individuals requesting or receiving services at
the time of intake or application. The release shall state that only
information directly related to client and case eligibility will be
subject to disclosure to officials of the Department.
2. Revise part 1386 to read as follows.
PART 1386--FORMULA GRANT PROGRAMS
Section Contents
Subpart A--Basic Requirements
Sec.
1386.1 General.
1386.2 Obligation of funds.
1386.3 Liquidation of obligations.
1386.4 [Reserved]
Subpart B--Protection and Advocacy of Individual Rights
1386.19 Definitions.
1386.20 Agency Designated to Administer the State Protection and
Advocacy System.
1386.21 Requirements and authority of the State Protection and
Advocacy System.
1386.22 Periodic reports: State Protection and Advocacy System.
1386.23 Non-allowable costs for the State Protection and Advocacy
System.
1386.24 Allowable litigation costs for the State Protection and
Advocacy System.
Subpart C--Access to Records, Service Providers, and Service Recipients
1386.25 Access to records.
1386.26 Denial or delay of access.
1386.27 Access to Service Providers and Service Recipients.
1386.28 Confidentiality of protection and advocacy systems records.
Subpart D--Federal Assistance to State Councils on Developmental
Disabilities
1386.30 State plan requirements.
1386.31 State plan submittal and approval.
1386.32 Periodic reports: Federal assistance to State Councils on
Developmental Disabilities.
1386.33 Protection of employee's interests.
1386.34 Designated State Agency.
[[Page 19727]]
1386.35 Allowable and non-allowable costs for Federal Assistance to
State Councils on Developmental Disabilities.
1386.36 Final disapproval of the State plan or plan amendments.
Subpart E--Practice and Procedure for Hearings Pertaining to State's
Conformity and Compliance With Developmental Disabilities State Plans,
Reports and Federal Requirements
General
1386.80 Definitions.
1386.81 Scope of rules.
1386.82 Records to the public.
1386.83 Use of gender and number.
1386.84 Suspension of rules.
1386.85 Filling and service of papers.
Preliminary Matters--Notice and Parties
1386.90 Notice of hearing opportunity for hearing.
1386.91 Time of hearing.
1386.92 Place.
1386.93 Issues at hearing.
1386.94 Request to participate in hearing.
Hearing Procedures
1386.100 Who presides.
1386.101 Authority of presiding officer.
1386.102 Rights of parties.
1386.103 Discovery.
1386.104 Evidentiary purpose.
1386.105 Evidence.
1386.106 Exclusion from hearing for misconduct.
1386.107 Unsponsored written material.
1386.108 Official transcript.
1386.109 Record for decision.
Posthearing Procedures, Decisions
1386.110 Posthearing briefs.
1386.111 Decisions following hearing.
1386.112 Effective date of decision by the Assistant Secretary.
Authority: 42 U.S.C. 15001 et seq.
Subpart A--Basic Requirements
Sec. 1386.1 General.
All rules under this subpart are applicable to both the State
Councils on Developmental Disabilities and the agency designated to
administer the State Protection and Advocacy System (P&As).
Sec. 1386.2 Obligation of funds.
(a) Funds which the Federal Government allots under this part
during a Federal fiscal year are available for obligation by States for
a two-year period beginning with the first day of the Federal fiscal
year in which the grant is awarded.
(b)(1) A State incurs an obligation for acquisition of personal
property or for the performance of work on the date it makes a binding,
legally enforceable, written commitment, or when the State Council on
Developmental Disabilities enters into an Interagency Agreement with an
agency of State government for acquisition of personal property or for
the performance of work.
(2) A State incurs an obligation for personal services, for
services performed by public utilities, for travel or for rental of
real or personal property on the date it receives the services, its
personnel takes the travel, or it uses the rented property.
(c)(1) A Protection & Advocacy System may elect to treat entry of
an appearance in judicial and administrative proceedings on behalf of
an individual with a developmental disability as a basis for obligating
funds for the litigation costs. The amount of the funds obligated must
not exceed a reasonable estimate of the costs, and the way the estimate
was calculated must be documented.
(2) For the purpose of this paragraph, litigation costs mean
expenses for court costs, depositions, expert witness fees, travel in
connection with a case and similar costs, and costs resulting from
litigation in which the agency has represented an individual with
developmental disabilities (e.g., monitoring court orders, consent
decrees), but not for salaries of employees of the P&A. All funds made
available for Federal assistance to State Councils on Developmental
Disabilities and to the P&As obligated under this paragraph are subject
to the requirement of paragraph (a) of this section. These funds, if
reobligated, may be reobligated only within a two-year period beginning
with the first day of the Federal fiscal year in which the funds were
originally awarded.
Sec. 1386.3 Liquidation of obligations.
(a) All obligations incurred pursuant to a grant made under the Act
for a specific Federal fiscal year, must be liquidated within two years
of the close of the Federal fiscal year in which the grant was awarded.
(b) The Commissioner may waive the requirements of paragraph (a) of
this section when State law impedes implementation or the amount of
obligated funds to be liquidated is in dispute.
(c) Funds attributable to obligations which are not liquidated in
accordance with the provisions of this section revert to the Federal
Government.
Sec. 1386.4 [Reserved]
Subpart B--Protection and Advocacy of Individual Rights
Sec. 1386.19 Definitions.
As used in Sec. Sec. 1386.20, 1386.21, 1386.24, and 1386.25 of
this part and subpart C the following definitions apply:
Abuse. The term ``abuse'' means any act or failure to act which was
performed, or which was failed to be performed, knowingly, recklessly,
or intentionally, and which caused, or may have caused, injury or death
to an individual with developmental disabilities, and includes but is
not limited to such acts as: verbal, nonverbal, mental and emotional
harassment; rape or sexual assault; striking; the use of excessive
force when placing such an individual in bodily restraints; the use of
bodily or chemical restraints which is not in compliance with Federal
and State laws and regulations; or, any other practice which is likely
to cause immediate physical or psychological harm or result in long
term harm if such practices continue. In addition, the P&A may
determine, in its discretion, that repeated and/or egregious violations
of an individual's statutory or constitutional rights amounts to abuse,
such as in a case where an individual is subject to significant
financial exploitation which may prevent the individual from providing
for his or her basic needs such as food and shelter.
American Indian Consortium. The term ``American Indian Consortium''
means any confederation of 2 or more recognized American Indian tribes,
created through the official action of each participating tribe, that
has a combined total resident population of 150,000 enrolled tribal
members and a contiguous territory of Indian lands in two or more
States.
Complaint. The term ``complaint'' includes, but is not limited to,
any report or communication, whether formal or informal, written or
oral, received by the system, including media accounts, newspaper
articles, telephone calls (including anonymous calls) from any source
relating to the status or treatment of an individual with a
developmental disability.
Designating Official. The term ``designating official'' means the
Governor or other State official, who is empowered by the State
legislature or Governor to designate the State official or public or
private agency to be accountable for the proper use of funds by and
conduct of the agency designated to administer the State Protection and
Advocacy System.
Full Investigation. The term ``full investigation'' means access to
service providers, individuals with developmental disabilities and
records authorized under these regulations, that are necessary for a
P&A system to make a determination about whether alleged or suspected
instances of abuse and neglect are taking place or have taken
[[Page 19728]]
place. Full investigations may be conducted independently or in
cooperation with other agencies authorized to conduct similar
investigations.
Legal Guardian, conservator and legal representative. The terms
``legal guardian,'' ``conservator,'' and ``legal representative'' all
mean an individual appointed and regularly reviewed by a State court or
agency empowered under State law to appoint and review such officers,
and having authority to make all decisions on behalf of individuals
with developmental disabilities. It does not include persons acting
only as a representative payee, persons acting only to handle financial
payments, attorneys or other persons acting on behalf of an individual
with developmental disabilities only in individual legal matters, or
officials or their designees responsible for the provision of treatment
or habilitation services to an individual with developmental
disabilities.
Neglect. The term ``neglect'' means a negligent act or omission by
an individual responsible for providing services, supports or other
assistance which caused or may have caused injury or death to an
individual with developmental disabilities, or which placed an
individual with developmental disabilities at risk of injury or death,
and includes acts or omissions such as failure to: establish or carry
out an appropriate individual program plan or treatment plan (including
a discharge plan); provide adequate nutrition, clothing, or health care
to an individual with developmental disabilities; or provide a safe
environment which also includes failure to maintain adequate numbers of
trained staff.
Probable cause. The term ``probable cause'' means, depending on the
context, a reasonable ground for belief that an individual with
developmental disabilities has been, or may be, subject to abuse or
neglect, or that the health or safety of the individual is in serious
and immediate jeopardy. The individual making such determination may
base the decision on reasonable inferences drawn from his or her
experience or training regarding similar incidents, conditions or
problems that are usually associated with abuse or neglect. The P&A
system is the final arbiter of probable cause between itself and the
organization or individual from whom it is seeking records.
Service provider. The term ``service provider'' refers to any
individual (including a family member of an individual with a
developmental disability), or a public or private organization or
agency that provides, directly or through contract, brief or long-term
services, supports or other assistance to one or more individuals with
developmental disabilities. Service providers include, entities that
provide either specialized assistance addressing the needs of persons
with developmental disabilities or more general assistance such as the
provision of vocational training, transportation, education or shelter,
food or clothing. Service providers may include, but are not limited
to, organizations such as group homes, board and care homes, individual
residences and apartments, day programs, public and private residential
and non-residential schools (including charter schools), juvenile
detention centers, hospitals, nursing homes, homeless shelters, and
jails and prisons.
State Protection and Advocacy System. The term ``State Protection
and Advocacy System'' is synonymous with the term ``P&A'' used
elsewhere in this regulation, and the terms ``system'' and ``Protection
and Advocacy System'' used in this part and in part C.
Sec. 1386.20 Agency Designated to Administer the State Protection and
Advocacy System.
(a) The designating official must designate the State official or
public or private agency to be accountable for proper use of funds and
conduct of the Protection and Advocacy System.
(b) An agency of the State or private agency providing direct
services, including guardianship services, may not be designated as the
agency to administer the Protection and Advocacy System.
(c) In the event that an entity outside of the State government is
designated to carry out the program, the designating official or entity
must assign a responsible State official to receive, on behalf of the
State, notices of disallowances and compliance actions as the State is
accountable for the proper and appropriate expenditure of Federal
funds.
(d)(1) Prior to any redesignation of the agency which administers
and operates the State Protection and Advocacy System, the designating
official must give written notice of the intention to make the
redesignation to the agency currently administering and operating the
State Protection and Advocacy System by registered or certified mail.
The notice must indicate that the proposed redesignation is being made
for good cause. The designating official also must publish a public
notice of the proposed action. The agency and the public shall have a
reasonable period of time, but not less than 45 days, to respond to the
notice.
(2) The public notice must include:
(i) The Federal requirements for the State Protection and Advocacy
System for individuals with developmental disabilities (Section 143 of
the Act); and where applicable, the requirements of other Federal
advocacy programs administered by the State Protection and Advocacy
System;
(ii) The goals and function of the State's Protection and Advocacy
System including the current Statement of Goals and Priorities;
(iii) The name and address of the agency currently designated to
administer and operate the State Protection and Advocacy System, and an
indication of whether the agency also operates other Federal advocacy
programs;
(iv) A description of the current agency operating and
administering the Protection and Advocacy System including, as
applicable, descriptions of other Federal advocacy programs it
operates;
(v) A clear and detailed explanation of the good cause for the
proposed redesignation;
(vi) A statement suggesting that interested persons may wish to
write the current agency operating and administering the State
Protection and Advocacy System at the address provided in paragraph
(d)(2)(iii) of this section to obtain a copy of its response to the
notice required by paragraph (d)(1) of this section. Copies shall be
provided in accessible formats to individuals with disabilities upon
request;
(vii) The name of the new agency proposed to administer and operate
the State Protection and Advocacy System under the Developmental
Disabilities program. This agency will be eligible to administer other
Federal advocacy programs;
(viii) A description of the system which the new agency would
administer and operate, including a description of all other Federal
advocacy programs the agency would operate;
(ix) The timetable for assumption of operations by the new agency
and the estimated costs of any transfer and start-up operations; and
(x) A statement of assurance that the proposed new designated State
Protection and Advocacy System will continue to serve existing clients
and cases of the current P&A System or refer them to other sources of
legal advocacy as appropriate, without disruption.
(3) The public notice as required by paragraph (d)(1) of this
section, must be
[[Page 19729]]
in a format accessible to individuals with developmental disabilities
or their representatives, e.g., tape, diskette. The designating
official must provide for publication of the notice of the proposed
redesignation using the State register, statewide newspapers, public
service announcements on radio and television, or any other legally
equivalent process. Copies of the notice must be made generally
available to individuals with developmental disabilities and mental
illness who live in residential facilities through posting or some
other means.
(4) After the expiration of the public comment period required in
paragraph (d)(1) of this section, the designating official must conduct
a public hearing on the redesignation proposal. After consideration of
all public and agency comments, the designating official must give
notice of the final decision to the currently designated agency and the
public through the same means used under paragraph (d)(3) of this
section. This notice must include a clear and detailed explanation of
the good cause finding. If the notice to the currently designated
agency states that the redesignation will take place, it also must
inform the agency of its right to appeal this decision to the Assistant
Secretary for Children and Families, who has been delegated the
authority to hear appeals by the Secretary, and provide a summary of
the public comments received in regard to the notice of intent to
redesignate and the results of the public hearing and its responses to
those comments. The redesignation shall not be effective until 10
working days after notifying the current agency that administers and
operates the State Protection and Advocacy System or, if the agency
appeals, until the Assistant Secretary has considered the appeal.
(e)(1) Following notification as indicated in paragraph (d)(4) of
this section, the agency that administers and operates the State
Protection and Advocacy System which is the subject of such action, may
appeal the redesignation to the Assistant Secretary. To do so, the
agency that administers and operates the State Protection and Advocacy
System must submit an appeal in writing to the Assistant Secretary
within 20 days of receiving official notification under paragraph
(d)(4) of this section, with a separate copy sent by registered of
certified mail to the designating official who made the decision
concerning redesignation.
(2) In the event that the agency subject to redesignation does
exercise its right to appeal under paragraph (e)(1) of this section,
the designating official must give public notice of the Assistant
Secretary's final decision regarding the appeal through the same means
utilized under paragraph (d)(3) of this section within 10 working days
of receipt of the Assistant Secretary's final decision under paragraph
(e)(6) of this section.
(3) The designating official within 10 working days from the
receipt of a copy of the appeal must provide written comments to the
Assistant Secretary (with a copy sent by registered or certified mail
to the Protection and Advocacy agency appealing under paragraph (e)(1)
of this section), or withdraw the redesignation. The comments must
include a summary of the public comments received in regard to the
notice of intent to redesignate and the results of the public hearing
and its responses to those comments.
(4) In the event that the designating official withdraws the
redesignation while under appeal pursuant to paragraph (e)(1) of this
section, the designating official must notify the Assistant Secretary,
and the current agency, and must give public notice of his or her
decision through the same means utilized under paragraph (d)(3) of this
section.
(5) As part of their submission under paragraph (e)(1) or (e)(3) of
this section, either party may request, and the Assistant Secretary may
grant, an opportunity for an informal meeting with the Assistant
Secretary at which representatives of both parties will present their
views on the issues in the appeal. The meeting will be held within 20
working days of the submission of written comments by the designating
official under paragraph (e)(2) of this section. The Assistant
Secretary will promptly notify the parties of the date and place of the
meeting.
(6) Within 30 days of the informal meeting under paragraph (e)(5)
of this section, or, if there is no informal meeting under paragraph
(e)(5) of this section, within 30 days of the submission under
paragraph (e)(3) of this section, the Assistant Secretary will issue to
the parties a final written decision on whether the redesignation was
for good cause as defined in paragraph (d)(1) of this section. The
Assistant Secretary will receive comments on the record from agencies
administering the Federal advocacy programs that will be directly
affected by the proposed redesignation. The P&A and the designating
official will have an opportunity to comment on the submissions of the
Federal advocacy programs. The Assistant Secretary shall consider the
comments of the Federal programs, the P&A and the designating official
in making his final decision on the appeal.
(f)(1) Within 30 days after the redesignation becomes effective
under paragraph (d)(4) of this section, the designating official must
submit an assurance to the Assistant Secretary that the newly
designated agency that will administer and operate the State Protection
and Advocacy System meets the requirements of the statute and the
regulations.
(2) In the event that the agency administering and operating the
State Protection and Advocacy System subject to redesignation does not
exercise its rights to appeal within the period provided under
paragraph (e)(1) of this section, the designating official must provide
to the Assistant Secretary documentation that the agency was
redesignated for good cause. Such documentation must clearly
demonstrate that the Protection and Advocacy agency subject to
redesignation was not redesignated for any actions or activities which
were carried out under section 143 of the Act, this regulation or any
other Federal advocacy program's legislation or regulations.
Sec. 1386.21 Requirements and authority of the State Protection and
Advocacy System.
(a) In order for a State to receive Federal funding for Protection
and Advocacy activities under this subpart, as well as for the State
Council on Developmental Disabilities activities (subpart D of this
part), the Protection and Advocacy System (P&A) must meet the
requirements of Section 143 and 144 of the Act (42 U.S.C. 15043 and 42
U.S.C. 15044) and that system must be operational.
(b) Allotments must be used to supplement and not to supplant the
level of non-Federal funds available in the State for activities under
the Act, which shall include activities on behalf of individuals with
developmental disabilities to remedy abuse, neglect, and violations of
rights as well as information and referral activities.
(c) A P&A shall not implement a policy or practice restricting the
remedies that may be sought on the behalf of individuals with
developmental disabilities or compromising the authority of the P&A to
pursue such remedies through litigation, legal action or other forms of
advocacy. Under this requirement, States may not establish a policy or
practice, which requires the P&A to: obtain the State's review or
approval of the P&A's plans to undertake a particular advocacy
initiative, including specific litigation (or to pursue litigation
[[Page 19730]]
rather than some other remedy or approach); refrain from representing
individuals with particular types of concerns or legal claims, or
refrain from otherwise pursuing a particular course of action designed
to remedy a violation of rights, such as educating policymakers about
the need for modification or adoption of laws or policies affecting the
rights of individuals with developmental disabilities; restrict the
manner of the P&A's investigation in a way that is inconsistent with
the system's required authority under the DD Act; or similarly
interfere with the P&A's exercise of such authority. The requirements
of this paragraph shall not prevent P&As, including those functioning
as agencies within State governments, from developing case or client
acceptance criteria as part of the annual priorities identified by the
P&A as described in section 1386.23(c) of this part. Clients must be
informed at the time they apply for services of such criteria.
(d) A Protection and Advocacy System shall be free from hiring
freezes, reductions in force, prohibitions on staff travel, or other
policies, imposed by the State, to the extent that such policies would
impact system program staff or functions funded with Federal funds, and
would prevent the system from carrying out its mandates under the Act.
(e) A Protection and Advocacy System shall have sufficient staff,
qualified by training and experience, to carry out the responsibilities
of the system in accordance with the priorities of the system and
requirements of the Act. These responsibilities include the
investigation of allegations of abuse, neglect and representations of
individuals with developmental disabilities regarding rights
violations.
(f) A Protection and Advocacy System may exercise its authority
under State law where the State authority exceeds the authority
required by the Developmental Disabilities Assistance and Bill of
Rights Act of 2000. However, State law must not diminish the required
authority of the Protection and Advocacy System as set by the Act.
(g) Each Protection and Advocacy System that is a public system
without a multimember governing or advisory board must establish an
advisory council in order to provide a voice for individuals with
developmental disabilities. The Advisory Council shall advise the
Protection and Advocacy System on program policies and priorities. The
Advisory Council shall be comprised of a majority of individuals with
developmental disabilities who are eligible for services, or have
received or are receiving services or parents or family members
(including those representing individuals with developmental
disabilities who live in institutions and home and community based
settings), guardians, advocates, or authorized representatives of such
individuals.
(h) Prior to any Federal review of the State program, a 30-day
notice and an opportunity for public comment must be published in the
Federal Register. Reasonable effort shall be made by the appropriate
Regional Office to seek comments through notification to major
disability advocacy groups, the State Bar, disability law resources,
the State Councils on Developmental Disabilities and the University
Centers for Excellence in Developmental Disabilities Education,
Research, and Service, for example, through newsletters and publication
of those organizations. The findings of public comments may be
consolidated if sufficiently similar issues are raised and they shall
be included in the report of the onsite visit.
(i) Before the Protection and Advocacy System releases information
to individuals not otherwise authorized to receive it, the Protection
and Advocacy System must obtain written consent from the client
requesting assistance, if competent, or his or her guardian.
Sec. 1386.22 Periodic reports: State Protection and Advocacy System.
(a) By January 1 of each year, each State Protection and Advocacy
System shall submit to ADD, an Annual Program Performance Report. In
order to be accepted, the Report must meet the requirements of Section
144(e) of the Act (42 U.S.C. 15044), the applicable regulation and
include information on the System's program necessary for the Secretary
to comply with section 105(1), (2), and (3) of the Act (42 U.S.C.
15005). The Report shall describe the activities, accomplishments, and
expenditures of the system during the preceding fiscal year, including
a description of the system's goals, the extent to which the goals were
achieved, barriers to their achievement, the process used to obtain
public input, the nature of such input, and how such input was used,
the extent to which unserved or underserved individuals or groups,
particularly from ethnic or racial groups or geographic regions (e.g.,
rural or urban areas), were the target of assistance or service, and
other such information on the Protection and Advocacy System's
activities requested by ADD. In addition, each System must report on
its achievement of the measures of progress for the preceding year
pursuant to Sec. 1385.5(a) (4) of this part.
(b) Financial status reports (standard form 269) must be submitted
by the agency administering and operating the State Protection and
Advocacy System semiannually.
(c) By January 1 of each year, the State Protection and Advocacy
System shall submit to ADD, an Annual Statement of Goals and
Priorities, (SGP), for the coming fiscal year as required under Section
143(a)(2)(C) of the Act (42 U.S.C. 15043). In order to be accepted by
ADD, an SGP must meet the requirements of the Act and the applicable
regulation, including Sec. 1385.5(a)(3).
(1) The SGP is a description and explanation of the system's goals
and priorities for its activities, selection criteria for its
individual advocacy and training activities, and the outcomes it
strives to accomplish. The SGP is developed through data driven
strategic planning. For each goal in an area of emphasis the indicators
of progress (measures of consumer satisfaction, improvement, and
collaboration) will apply as provided under section 1385.5 of this
part. If changes are made to the goals or the indicators of progress
established for a year, the SGP must be amended to reflect those
changes. The SGP must include a description of how the Protection and
Advocacy System operates, and where applicable, how it coordinates the
State Protection and Advocacy program for individuals with
developmental disabilities with other Protection and Advocacy programs
administered by the State Protection and Advocacy System. This
description must include the System's processes for intake, internal
and external referrals, and streamlining of advocacy services. If the
System will be requesting or requiring fees or donations from clients
as part of the intake process, the SGP must state that the system will
be doing so. The description also must address collaboration, the
reduction of duplication and overlap of services, the sharing of
information on service needs, and the development of statements of
goals and priorities for the various advocacy programs.
(2) Priorities as established through the SGP serve as the basis
for the Protection and Advocacy System to determine which cases are
selected in a given fiscal year. Protection and Advocacy Systems have
the authority to turn down a request for assistance when it is outside
the scope of the SGP, but they must inform individuals when this is the
basis for turning them down.
(d) Each fiscal year, the Protection and Advocacy System shall:
[[Page 19731]]
(1) Obtain formal public input on its Statement of Goals and
Priorities;
(2) At a minimum, provide for a broad distribution of the proposed
Statement of Goals and Priorities for the next fiscal year in a manner
accessible to individuals with developmental disabilities and their
representatives, allowing at least 45 days from the date of
distribution for comment;
(3) Provide to the State Councils on Developmental Disabilities and
the University Centers for Excellence in Developmental Disabilities
Education, Research and Service a copy of the proposed Statement of
Goals and Priorities for comment concurrently with the public notice;
(4) Incorporate or address any comments received through public
input and any input received from the State Councils on Developmental
Disabilities and the University Centers for Excellence in Developmental
Disabilities Education, Research and Service in the final Statement
submitted; and
(5) Address how the Protection and Advocacy System; State Councils
on Developmental Disabilities and University Centers for Excellence in
Developmental Disabilities Education Research and Service will
collaborate with each other and with other public and private entities.
Sec. 1386.23 Non-allowable costs for the State Protection and
Advocacy System.
(a) Federal financial participation is not allowable for:
(1) Costs incurred for activities on behalf of individuals with
developmental disabilities to solve problems not directly related to
their disabilities and which are faced by the general populace. Such
activities include but are not limited to: preparation of wills,
divorce decrees, and real estate proceedings. Allowable costs in such
cases would include the Protection and Advocacy System providing
disability-related technical assistance information and referral to
appropriate programs and services; and
(2) Costs not allowed under other applicable statutes, Departmental
regulations and issuances of the Office of Management and Budget.
(b) Attorneys' fees are considered program income pursuant to part
74-Administration of Grants and part 92-Uniform Administrative
Requirements for Grants and Cooperative Agreements to State and Local
Governments and must be added to the funds committed to the program and
used to further the objectives of the program. This requirement shall
apply to all attorneys' fees, including those earned by contractors and
those received after the project period in which they were earned.
Sec. 1386.24 Allowable litigation costs for the State Protection and
Advocacy System.
Allotments may be used to pay the otherwise allowable costs
incurred by a Protection and Advocacy System in bringing lawsuits in
its own right to redress incidents of abuse or neglect, discrimination
and other rights violations impacting on individuals with developmental
disabilities to obtain access to records and when it appears on behalf
of named plaintiffs or a class of plaintiff for such purposes.
Subpart C--Access to Records, Service Providers and Service
Recipients
Sec. 1386.25 Access to records.
(a) Pursuant to sections 143(a)(2), (A)(i), (B), (I) and (J) of the
Act, and subject to the provisions of this section, a Protection and
Advocacy (P&A) System, and all of its authorized agents, shall have
access to the records of individuals with developmental disabilities
under the following circumstances:
(1) If authorized by an individual who is a client of the system,
or who has requested assistance from the system, or by such
individual's legal guardian, conservator or other legal representative.
(2) In the case of an individual, including an individual whose
whereabouts are unknown, to whom all of the following conditions apply:
(i) The individual, due to his or her mental or physical condition,
is unable to authorize the system to have access;
(ii) The individual does not have a legal guardian, conservator or
other legal representative, or the individual's guardian is the State
(or one of its political subdivisions); and
(iii) The individual has been the subject of a complaint to the P&A
system about his or her status or treatment, or the P&A system has
probable cause (which can be the result of monitoring or other
activities including media reports and newspaper articles) to believe
that such individual has been subject to abuse and neglect by any other
individual or has subjected him or herself to self-abuse.
(3) In the case of an individual, who has a legal guardian,
conservator, or other legal representative, about whom a complaint has
been received by the system or, as a result of monitoring or other
activities, the system has determined that there is probable cause to
believe that the individual with developmental disabilities has been
subject to abuse or neglect by any other individual or has subjected
him or herself to self-abuse, whenever the following conditions exist:
(i) The P&A system has made a good faith effort to contact the
legal guardian, conservator, or other legal representative upon prompt
receipt of the name and address of the legal guardian, conservator, or
other legal representative;
(ii) The system has offered assistance to the legal guardian,
conservator, or other legal representative to resolve the situation;
and
(iii) The legal guardian, conservator, or other legal
representative has failed or refused to act on behalf of the
individual.
(b) Individual records to which P&A systems must have access under
Section 143(a)(2), (A)(i), (B), (I) and (J) of the Act (whether written
or in another medium, draft, preliminary or final, including
handwritten notes, electronic files, photographs or video or audiotape
records) shall include, but shall not be limited to:
(1) Individual records prepared or received in the course of
providing intake, assessment, evaluation, education, training and other
services, supports or assistance, including medical records, financial
records, and monitoring and other reports prepared or received by a
service provider. This includes records stored or maintained at sites
other than the service provider.
(2) Reports prepared by a Federal, State or local governmental
agency, or a private organization charged with investigating incidents
of abuse or neglect, injury or death. The reports subject to this
requirement include, but are not limited to, those prepared or
maintained by agencies with responsibility for overseeing human
services systems. The organizations whose reports are subject to this
requirement include, but are not limited to, agencies in the foster
care systems, developmental disabilities systems, and prison and jail
systems, criminal and civil law enforcement agencies such as police
departments, State and Federal licensing and certification agencies,
and private accreditation organizations such as the Joint Commission on
the Accreditation of Health Care Organizations. The reports subject to
this requirement describe any or all of the following:
(i) The incidents of abuse, neglect, injury, and/or death;
(ii) The steps taken to investigate the incidents;
(iii) Reports and records, including personnel records, prepared or
[[Page 19732]]
maintained by the service provider in connection with such reports of
incidents; or,
(iv) Supporting information that was relied upon in creating a
report including all information and records that describe persons who
were interviewed, physical and documentary evidence that was reviewed,
and the related investigative findings; and
(3) Discharge planning records.
(c) The time period in which the P&A system must be given access to
records of individuals with developmental disabilities under sections
143(a)(2)(A)(i), (B), (I), and (J) of the Act, and subject to the
provisions of this section, varies depending on the following
circumstances:
(1) If the P&A system determines that there is probable cause to
believe that the health or safety of the individual with a
developmental disability is in serious and immediate jeopardy, or in
any case of the death of an individual with a developmental disability,
access to the records of the individual with a developmental
disability, as described in paragraph (b) of this section shall be
provided (including the right to inspect and copy records as specified
in paragraph (d) of this section) to the P&A system within 24 hours of
receipt of the P&A system's written request for the records without the
consent of another party. In the case of an inquiry regarding a death
of an individual with a developmental disability, probable cause to
believe the individual with a developmental disability's death resulted
from abuse or neglect or any other specific cause is not required for
the P&A system to obtain access to the records. Any individual who dies
in a situation in which services, supports, or other assistance are,
have been, or may customarily be provided to individuals with
developmental disabilities shall, for purposes of the P&A system's
obtaining access to the individual's records, be deemed an individual
with a developmental disability.
(2) In all other cases, access to records of individuals with
developmental disabilities shall be provided to the P&A system within
three business days after the receipt of such a written request from
the P&A system.
(d) A system shall be permitted to inspect and copy information and
records, subject to a reasonable charge to offset duplicating costs. If
the organization or agency having possession of the records copies them
for the P&A system, it may not charge the P&A system an amount that
would exceed the amount it customarily charged other non-profit or
State government agencies for reproducing documents. At its option, the
P&A may make written notes when inspecting information and records, and
may use its own photocopying equipment to obtain copies. If a party
other than the P&A system performs the photocopying or other
reproduction of records, it shall provide the photocopies or
reproductions to the P&A system within the time frames specified in
paragraph (c) of this section.
Sec. 1386.26 Denial or delay of access.
If a P&A system's access to service providers, programs, service
recipients or records is denied or delayed beyond the deadlines
specified in Sec. Sec. 1386.25 and 1386.27 of this part, the P&A
system shall be provided, within one business day after the expiration
of such deadline with a written statement of reasons for the denial or
delay. In the case of a denial for alleged lack of authorization, the
name, address and telephone number of individual service recipients and
legal guardians, conservators, or other legal representative will be
included in the aforementioned response. All of the above information
shall be provided whether or not the P&A has probable cause to suspect
abuse or neglect, or has received a complaint.
Sec. 1386.27 Access to service providers and service recipients.
(a) Access to service providers and service recipients shall be
extended to all authorized agents of a P&A system.
(b) A P&A system shall have reasonable unaccompanied access to
public and private service providers, programs in the State, and to all
areas of the service provider's premises which are used by service
recipients or are accessible to them. Such access shall be provided
without advance notice and made available immediately upon request. The
P&A system shall have reasonable unaccompanied access to service
recipients at all times necessary to conduct a full investigation of an
incident of abuse or neglect. This authority shall include the
opportunity to interview any service recipient, employee, or other
persons, including the person thought to be the victim of such abuse,
who might be reasonably believed by the system to have knowledge of the
incident under investigation. The P&A may not be required to provide
the name or other identifying information regarding the service
recipient or staff with whom it plans to meet; neither may the P&A be
required to justify or explain its interaction with such persons. Such
access shall be afforded upon request, by the P&A system when:
(1) An incident is reported or a complaint is made to the P&A
system;
(2) The P&A system determines that there is probable cause to
believe that an incident has or may have occurred; or
(3) The P&A system determines that there is or may be imminent
danger of serious abuse or neglect of an individual with a
developmental disability.
(c) In addition to the access required under paragraph (b) of this
section, a P&A system shall have reasonable unaccompanied access to
service providers for routine circumstances. This includes areas which
are used by service recipients and are accessible to service recipients
at reasonable times which at a minimum shall include normal working
hours and visiting hours. A P&A also shall be permitted to attend
treatment planning meetings concerning individual service recipients
with the consent of the individual or his or her guardian, conservator
or other legal representative. Access to service providers shall be
afforded immediately upon an oral or written request by the P&A system.
Except where complying with the P&A's request would interfere with
treatment or therapy to be provided, service providers shall provide
access to individuals for the purpose covered by this paragraph within
24 hours of the system's making a request. If the P&A's access to an
individual must be delayed beyond 24 hours to allow for the provision
of treatment or therapy, the P&A shall receive access as soon as
possible thereafter. Service recipients subject to the requirements in
this paragraph include adults or minors who have legal guardians or
conservators. P&A activities shall be conducted so as to minimize
interference with service provider programs, respect service
recipients' privacy interests, and honor a recipient's request to
terminate an interview. This access is for the purpose of:
(1) Providing information, training, and referral for programs
addressing the needs of individuals with developmental disabilities,
and information and training about individual rights, and the
protection and advocacy services available from the P&A system,
including the name, address, and telephone number of the P&A system;
(2) Monitoring compliance with respect to the rights and safety of
service recipients; and
(3) Inspecting, viewing and photographing all areas of a service
provider's premises which are used by service recipients or are
accessible to them.
[[Page 19733]]
(d) Unaccompanied access to service recipients shall include the
opportunity to meet and communicate privately with individuals
regularly, both formally and informally, by telephone, mail and in
person.
Sec. 1386.28 Confidentiality of protection and advocacy systems
records.
(a) Records maintained by the P&A system are the property of the
P&A system which must protect them from loss, damage, tampering or use
by unauthorized individuals. The P&A system must:
(1) Except as provided elsewhere in this section, keep confidential
all records and information, including information contained in any
automated electronic database pertaining to:
(i) Clients;
(ii) Individuals who have been provided general information or
technical assistance on a particular matter;
(iii) The identity of individuals who report incidents of abuse or
neglect, or who furnish information that forms the basis for a
determination that probable cause exists; and
(iv) Names of individuals who have received services, supports or
other assistance, and who provided information to the P&A for the
record.
(2) Have written policies governing the access, storage,
duplication and release of information from client records.
(3) Obtain written consent from the client, if competent, or from
his or her legal representative; individuals who have been provided
general information or technical assistance on a particular matter; and
individuals who furnish reports or information that form the basis for
a determination of probable cause, before releasing information
concerning such individuals to individuals not otherwise authorized to
receive it.
(b) Nothing in this subpart shall prevent the P&A system from
issuing a public report of the results of an investigation which
maintains the confidentiality of the individuals listed in paragraph
(a)(1) of this section, or reporting the results of an investigation in
a manner which maintains the confidentiality of such individuals, to
responsible investigative or enforcement agencies should an
investigation reveal information concerning the service provider, its
staff, or employees warranting possible sanctions or corrective action.
This information may be reported to agencies responsible for service
provider licensing or accreditation, employee discipline, employee
licensing or certification, or criminal investigation or prosecution.
(c) Notwithstanding the confidentiality requirements of this
section, the P&A may make a report to investigative or enforcement
agencies, as described in paragraph (b), which reveals the identity of
an individual service recipient, and information relating to his or her
status or treatment:
(1) When the system has received a complaint that the individual
has been or may be subject to abuse and neglect, or has probable cause
(which can be the result of monitoring or other activities including
media reports and newspaper articles) to believe that such individual
has been or may be subject to abuse or neglect;
(2) When the system determines that there is probable cause to
believe the health or safety of the individual is in serious and
immediate jeopardy; or
(3) In any case of the death of an individual whom the system
believes may have had a developmental disability.
Subpart D--Federal Assistance to State Councils on Developmental
Disabilities
Sec. 1386.30 State plan requirements.
(a) In order to receive Federal funding under this subpart, each
State Developmental Disabilities Council must prepare and submit a
State plan which meets the requirements of Sections 124 and 125 of the
Act (42 U.S.C. 15024 and 15025), and the applicable regulation.
Development of the State plan and its periodic updating are the
responsibility of the State Council on Developmental Disabilities. As
provided in Section 124(d) of the Act, the Council shall provide
opportunities for public input and review, and will consult with the
Designated State Agency to determine that the plan is consistent with
applicable State laws, and obtain appropriate State plan assurances.
(b) Failure to comply with the State plan requirements may result
in the loss of Federal funds as described in Section 127 of the Act (42
U.S.C. 15027). The Secretary must provide reasonable notice and an
opportunity for a hearing to the Council and the Designated State
Agency before withholding any payments for planning, administration,
and services.
(c) The State plan must be submitted through the Electronic Data
Submission system which is used to collect quantifiable and qualifiable
information from the State Councils on Developmental Disabilities. The
plan must:
(1) Identify the agency or office in the State designated to
support the Council in accordance with Section 124(c)(2) and 125(d).
The Designated State Agency shall provide required assurances and
support services requested from and negotiated with the Council.
(2) For a year covered by the State plan, include for each area of
emphasis under which a goal or goals have been identified, the measures
of progress (measures of consumer satisfaction, collaboration, and
improvement) the Council has established or is required to apply
pursuant to section 1385.5 of this part to measure its progress in
furthering the purpose of the Developmental Disabilities Assistance and
Bill of Rights Act through advocacy, capacity building, and systemic
change activities.
(3) Provide for the establishment and maintenance of a Council in
accordance with Section 125 and describe the membership of such
Council. The non-State agency members of the Council shall be subject
to term limits to ensure rotating membership.
(d) The State plan must be updated during the five-year period when
substantive changes are contemplated in plan content, including changes
under paragraph (c)(2).
(e)(1) The State plan may provide for funding projects to
demonstrate new approaches to direct services that enhance the
independence, productivity, and integration and inclusion into the
community of individuals with developmental disabilities. Direct
service demonstrations must be short-term, no longer than five years,
and include a strategy to locate on-going funding from other sources.
For each demonstration funded, the State plan must include an estimated
period of the project's duration and a brief description of how the
services will be continued without Federal developmental disabilities
program funds. Council funds may not be used to fund on-going services
that should be paid for by the State or other sources.
(2) The State plan may provide for funding of other demonstration
projects or activities, including but not limited to outreach,
training, technical assistance, supporting and educating communities,
interagency collaboration and coordination, coordination with related
councils, committees and programs, barrier elimination, systems design
and redesign, coalition development and citizen participation, and
informing policymakers. Awards for these demonstrations should be no
longer than five years.
[[Page 19734]]
(f) The State plan must contain assurances that:
(1) The State will comply with all applicable Federal statutes and
regulations in effect during the time that the State is receiving
formula grant funding;
(2) The human rights of individuals with developmental disabilities
will be protected consistent with Section 109 of the Act (42 U.S.C.
15009).
(3) Buildings used in connection with activities assisted under the
plan must meet all applicable provisions of Federal and State laws
pertaining to accessibility, fire, health and safety standards.
(4) The State Council on Developmental Disabilities shall follow
the requirements of Section 125(c)(8), (9) and (10) of the Act
regarding budgeting, staff hiring, supervision, and assignment. Budget
expenditures must be consistent with applicable State laws and policies
regarding grants, contracts, and accounting, and bookkeeping practices
and procedures. In relation to staff hiring, the clause ``consistent
with State law'' in Section 125(c)(9) means that the hiring of State
Council on Developmental Disabilities staff must be done in accordance
with State personnel policies and procedures except that a State shall
not apply hiring freezes, reductions in force, prohibitions on staff
travel, or other policies, to the extent that such policies would
impact staff or functions funded with Federal funds, and would prevent
the Council from carrying out its functions under the Act.
Sec. 1386.31 State plan submittal and approval.
(a) The Council shall issue a public notice about the availability
of the proposed State plan or State plan amendment(s) for comment. The
Notice shall be published in formats accessible to individuals with
developmental disabilities and the general public (e.g., tape,
diskette, public forums, and newspapers) and shall provide a 45-day
period for public review and comment. The Council shall take into
account comments submitted within that period, and respond in the State
plan to significant comments and suggestions. A summary of the
Council's responses to State plan comments shall be submitted with the
State plan and made available for public review. This document shall be
made available in accessible formats upon request.
(b) The State plan or amendment must be submitted to ADD 45 days
prior to the fiscal year for which it is applicable. The State plan or
amendment must be approved by the entity or individual authorized to do
so under State law.
(c) Failure to submit an approvable State plan or amendment prior
to the Federal fiscal year for which it is applicable may result in the
loss of Federal financial participation. Plans received during a
quarter of the Federal fiscal year are approved back to the first day
of the quarter so costs incurred from that point forward are
approvable. Costs resulting from obligations incurred during the period
of the fiscal year for which an approved plan is not in effect are not
eligible for Federal financial participation.
(d) The Commissioner must approve any State plan or plan amendment
provided it meets the requirements of the Act and this regulation.
Sec. 1386.32 Periodic reports: Federal assistance to State Councils
on Developmental Disabilities.
(a) The Governor or appropriate State financial officer must submit
financial status reports (standard form 269) on the programs funded
under this Subpart semiannually.
(b) By January 1 of each year, the State Council on Developmental
Disabilities shall submit to ADD, an Annual Program Performance Report
through the system established by ADD. In order to be accepted by ADD,
reports must meet the requirements of Section 125(c)(7) of the Act (42
U.S.C. 15025) and the applicable regulations, include the information
on its program necessary for the Secretary to comply with Section
105(1), (2), and (3) of the Act (42 U.S.C. 15005), and any other
information requested by ADD. Each Report shall contain information
about the progress made by the Council in achieving its goals
including:
(1) A description of the extent to which the goals were achieved;
(2) A description of the strategies that contributed to achieving
the goals;
(3) To the extent to which the goals were not achieved, a
description of factors that impeded the achievement;
(4) Separate information on the self-advocacy goal described in
Section 124(c)(4)(A)(ii) of the Act (42 U.S.C. 15024);
(5) As appropriate, an update on the results of the comprehensive
review and analysis of the extent to which services, supports, and
other assistance are available to individuals with developmental
disabilities and their families, including the extent of unmet needs
for services, supports, and other assistance for those individuals and
their families, in the State as required in Section 124(c)(3) of the
Act (42 U.S.C. 15024);
(6) Information on consumer satisfaction with Council supported or
conducted activities;
(7) A description of the adequacy of health care and other
services, supports, and assistance that individuals with developmental
disabilities in Intermediate Care Facilities (Mental Retardation)
receive;
(8) To the extent available, a description of the adequacy of
health care and other services, supports, and assistance received by
individuals with developmental disabilities served through home and
community-based waivers (authorized under Section 1915(c) of the Social
Security Act);
(9) An accounting of the funds paid to the State awarded under the
DD Council program;
(10) A description of resources made available to carry out
activities to assist individuals with developmental disabilities
directly attributable to Council actions;
(11) A description of resources made available for such activities
that are undertaken by the Council in collaboration with other
entities; and
(12) A description of the method by which the Council will widely
disseminate the annual report to affected constituencies and the
general public and will assure that the report is available in
accessible formats.
(c) Each Council must include in its Annual Program Performance
Report information on its achievement of the measures of progress
established pursuant to Sec. 1385.5 for the year covered by the Report
(OMB Clearance 0980-0172).
Sec. 1386.33 Protection of employee's interests.
(a) Based on Section 124(c)(5)(J) of the Act (42
U.S.C.15024(c)(5)(J)), the State plan must assure fair and equitable
arrangements to protect the interest of all institutional employees
affected by actions under the plan to provide community living
activities. The State must inform employees of the State's decision to
provide for community living activities. Specific arrangements for the
protection of affected employees must be developed through negotiations
between the appropriate State authorities and employees or their
representatives.
(b) Fair and equitable arrangements must include procedures that
provide for the impartial resolution of disputes between the State and
an employee concerning the interpretation, application, and enforcement
of protection arrangements. To the maximum extent practicable, these
[[Page 19735]]
arrangements must include provisions for:
(1) The preservation of rights and benefits;
(2) Guaranteeing employment to employees affected by action under
the plan to provide alternative community living arrangements; and
(3) Employee training and retraining programs.
Sec. 1386.34 Designated State Agency.
(a) The Designated State Agency shall provide the required
assurances and other support services as requested and negotiated by
the Council. These include:
(1) Provision of financial reporting and other services as provided
under Section 125(d)(3)(D) of the Act; and
(2) Information and direction, as appropriate, on procedures on the
hiring, supervision, and assignment of staff in accordance with State
law.
(b) If the State Council on Developmental Disabilities requests a
review by the Governor (or State legislature, if applicable) of the
Designated State Agency, the Council must provide documentation of the
reason for change, and recommend a new preferred Designated State
Agency by the Governor (or State legislature, if applicable).
(c) After the review is completed by the Governor (or State
legislature, if applicable), and if no change is made, a majority of
the non-State agency members of the Council may appeal to the Assistant
Secretary for the Administration for Children and Families for a review
of the Designated State Agency if the Council's independence as an
advocate is not assured because of the actions or inactions of the
Designated State agency.
(d) The following steps apply to the appeal of the Governor's (or
State legislature, if applicable) designation of the Designated State
Agency.
(1) Prior to an appeal to the Assistant Secretary, the State
Council on Developmental Disabilities must give a 30 day written
notice, by certified mail, to the Governor (or State legislature, if
applicable) of the majority of non-State members' intention to appeal
the designation of the Designated State Agency.
(2) The appeal must clearly identify the grounds for the claim that
the Council's independence as an advocate is not assured because of the
action or inactions of the Designated State Agency.
(3) Upon receipt of the appeal from the State Council on
Developmental Disabilities, the Assistant Secretary will notify the
State Council on Developmental Disabilities and the Governor (or State
legislature, if applicable), by certified mail, that the appeal has
been received and will be acted upon within 60 days. The Governor (or
State legislature, if applicable) shall within 10 working days from the
receipt of the Assistant Secretary's notification provide written
comments to the Assistant Secretary (with a copy sent by registered or
certified mail to the Council) on the claims in the Council's appeal.
Either party may request, and the Assistant Secretary may grant, an
opportunity for an informal meeting with the Assistant Secretary at
which representatives from both parties will present their views on the
issues in the appeal. The meeting will be held within 20 working days
of the submission of written comments by the Governor (or State
legislature, if applicable). The Assistant Secretary will promptly
notify the parties of the date and place of the meeting.
(4) The Assistant Secretary will review the issue(s) and provide a
final written decision within 60 days following receipt of the appeal
from the State Council on Developmental Disabilities. If the
determination is made that the Designated State Agency should be
redesignated, the Governor (or State legislature, if applicable) must
provide written assurance of compliance within 45 days from receipt of
the decision.
(5) Anytime during this appeals process the State Council on
Developmental Disabilities may withdraw such request if resolution has
been reached with the Governor (or State legislature, if applicable) on
the Designated State Agency. The Governor (or State legislature, if
applicable) must notify the Assistant Secretary in writing of such a
decision.
(e) The Designated State Agency may authorize the Council to
contract with State agencies other than the Designated State Agency to
perform functions of the Designated State Agency.
Sec. 1386.35 Allowable and non-allowable costs for Federal Assistance
to State Councils on Developmental Disabilities.
(a) Under this subpart, Federal funding is available for costs
resulting from obligations incurred under the approved State plan for
the necessary expenses of administering the plan, which may include the
establishment and maintenance of the State Council, and all programs,
projects, and activities carried out under the State plan.
(b) Expenditures which are not allowable for Federal financial
participation are:
(1) Costs incurred by institutions or other residential or non-
residential programs which do not comply with the Congressional
findings with respect to the rights of individuals with developmental
disabilities in Section 109 of the Act (42 U.S.C. 15009).
(2) Costs incurred for activities not provided for in the approved
State plan; and
(3) Costs not allowed under other applicable statutes, Departmental
regulations, or issuances of the Office of Management and Budget.
(c) Expenditure of funds that supplant State and local funds are
not allowed. Supplanting occurs when State or local funds previously
used to fund activities under the State plan are replaced by Federal
funds for the same purpose. However, supplanting does not occur if
State or local funds are replaced with Federal funds for a particular
activity or purpose in the approved State plan if the replaced State or
local funds are then used for other activities or purposes in the
approved State plan.
(d) For purposes of determining aggregate minimum State share of
expenditures, there are three categories of expenditures:
(1) Expenditures for projects or activities undertaken directly by
the Council and Council staff to implement State plan activities, as
described in Section 126(a)(3) of the Act, require no non-Federal
aggregate of the necessary costs of such activities.
(2) Expenditures for projects whose activities or products target
individuals with developmental disabilities who live in urban or rural
poverty areas, as determined by the Secretary, but not carried out
directly by the Council and Council staff, as described in Section
126(a)(2) of the Act, shall have non-Federal funding of at least 10
percent in the aggregate of the necessary costs of such projects.
(3) All other projects not directly carried out by the Council and
Council staff shall have non-Federal funding of at least 25 percent in
the aggregate of the necessary costs of such projects.
(e) The Council may vary the non-Federal funding required on a
project-by-project, activity-by-activity basis (both poverty and non-
poverty activities), including requiring no non-Federal funding from
particular projects or activities as the Council deems appropriate so
long as the requirement for aggregate non-Federal funding is met.
Sec. 1386.36 Final disapproval of the State plan or plan amendments.
The Department will disapprove any State plan or plan amendment
only after
[[Page 19736]]
the following procedures have been complied with:
(a) The State plan has been submitted to ADD Central Office for
review. If after contacting the State on issues with the plan with no
resolution, a detailed written analysis of the reasons for recommending
disapproval shall be prepared and provided to the State Council and
State Designated Agency.
(b) Once the Commissioner has determined that the State plan, in
whole or in part, is not approvable, notice of this determination shall
be sent to the State with appropriate references to the records,
provisions of the statute and regulations, and all relevant
interpretations of applicable laws and regulations. The notification of
the decision must inform the State of its right to appeal in accordance
with 45 CFR part 1386, subpart E.
(c) The Commissioner's decision has been forwarded to the State
Council and its Designated State Agency by certified mail with a return
receipt requested.
(d) A State has filed its request for a hearing with the Assistant
Secretary within 21 days of the receipt of the decision. The request
for a hearing must be sent by certified mail to the Assistant
Secretary. The date of mailing the request is considered the date of
filing if it is supported by independent evidence of mailing. Otherwise
the date of receipt shall be considered the date of filing.
Subpart E--Practice and Procedure for Hearings Pertaining to
State's Conformity and Compliance With Developmental Disabilities
State Plans, Reports and Federal Requirements
General
Sec. 1386.80 Definitions.
For purposes of this Subpart:
Act. The term ``Act'' means the Developmental Disabilities
Assistance and Bill of Rights Act of 2000 (42 U.S.C. 15001 et seq.).
ADD. The term ``ADD'' means the Administration on Developmental
Disabilities within the Administration for Children and Families.
Assistant Secretary. The term ``Assistant Secretary'' means the
Assistant Secretary for Children and Families (ACF), Department of
Health and Human Services.
Department. The term ``Department'' means the Department of Health
and Human Services.
Payment or Allotment. The term ``payment'' or ``allotment'' means
an amount provided under part B or C of the Developmental Disabilities
Assistance and Bill of Rights Act of 2000. This term includes Federal
funds provided under the Act irrespective of whether the State must
match the Federal portion of the expenditure. This term shall include
funds previously covered by the terms ``Federal financial
participation,'' ``the State's total allotment,'' ``further payments,''
``payments,'' ``allotment'' and ``Federal funds.''
Presiding officer. The term ``presiding officer'' means anyone
designated by the Assistant Secretary to conduct any hearing held under
this subpart. The term includes the Assistant Secretary if the
Assistant Secretary presides over the hearing.
Sec. 1386.81 Scope of rules.
(a) The rules of procedures in this subpart govern the practice for
hearings afforded by the Department to States pursuant to Sections 124,
127 and 143 of the Act (42 U.S.C. 15024, 15027 and 15043).
(b) Nothing in this part is intended to preclude or limit
negotiations between the Department and the State, whether before,
during, or after the hearing to resolve the issues that are, or
otherwise would be, considered at the hearing. Negotiation and
resolution of issues are not part of the hearing, and are not governed
by the rules in this subpart, except as otherwise provided in this
subpart.
Sec. 1386.82 Records to the public.
All pleadings, correspondence, exhibits, transcripts of testimony,
exceptions, briefs, decisions, and other documents filed in the docket
in any proceeding are subject to public inspection.
Sec. 1386.83 Use of gender and number.
As used in this subpart, words importing the singular number may
extend and be applied to several persons or things, and vice versa.
Words importing either gender may be applied to the other gender or to
organizations.
Sec. 1386.84 Suspension of rules.
Upon notice to all parties, the Assistant Secretary may modify or
waive any rule in this subpart, unless otherwise expressly provided,
upon determination that no party will be unduly prejudiced and justice
will be served.
Sec. 1386.85 Filing and service of papers.
(a) All papers in the proceedings must be filed with the designated
individual in an original and two copies. Only the originals of
exhibits and transcripts of testimony need be filed.
(b) Copies of papers in the proceedings must be served on all
parties by personal delivery or by mail. Service on the party's
designated representative is deemed service upon the party.
Preliminary Matters--Notice and Parties
Sec. 1386.90 Notice of hearing or opportunity for hearing.
Proceedings are commenced by mailing a notice of hearing or
opportunity for hearing from the Assistant Secretary to the State
Council on Developmental Disabilities and the Designated State Agency,
or to the State Protection and Advocacy System or designating official.
The notice must state the time and place for the hearing, and the
issues that will be considered. The notice must be published in the
Federal Register.
Sec. 1386.91 Time of hearing.
The hearing must be scheduled not less than 30 days, nor more than
60 days after the notice of the hearing is mailed to the State.
Sec. 1386.92 Place.
The hearing must be held on a date and at a time and place
determined by the Assistant Secretary with due regard for convenience,
and necessity of the parties or their representatives. The site of the
hearing shall be accessible to individuals with disabilities.
Sec. 1386.93 Issues at hearing.
(a) Prior to a hearing, the Assistant Secretary may notify the
State in writing of additional issues which will be considered at the
hearing. That notice must be published in the Federal Register. If that
notice is mailed to the State less than 20 days before the date of the
hearing, the State or any other party, at its request, must be granted
a postponement of the hearing to a date 20 days after the notice was
mailed or such later date as may be agreed to by the Assistant
Secretary.
(b) If any issue is resolved in whole or in part, but new or
modified issues are presented, the hearing must proceed on the new or
modified issues.
(c)(1) If at any time, whether prior to, during, or after the
hearing, the Assistant Secretary finds that the State has come into
compliance with Federal requirements on any issue in whole or in part,
he or she must remove the issue from the proceedings in whole or in
part as may be appropriate. If all issues are removed the Assistant
Secretary must terminate the hearing.
(2) Prior to the removal of an issue, in whole or in part, from a
hearing involving issues relating to the conformity with Federal
requirements
[[Page 19737]]
under part B of the Act, of the State plan or the activities of the
State's Protection and Advocacy System, the Assistant Secretary must
provide all parties other than the Department and the State (see Sec.
1386.94(b) of this part) with the statement of his or her intention to
remove an issue from the hearing and the reasons for that decision. A
copy of the proposed State plan provision or document explaining
changes in the activities of the State's Protection and Advocacy System
on which the State and the Assistant Secretary have settled must be
sent to the parties. The parties must have an opportunity to submit in
writing within 15 days their views as to, or any information bearing
upon, the merits of the proposed provision and the merits of the
reasons for removing the issue from the hearing.
(d) In hearings involving questions of noncompliance of a State's
operation of its program under part B of the Act, with the State plan
or with Federal requirements, or compliance of the State's Protection
and Advocacy System with Federal requirements, the same procedure set
forth in paragraph (c)(2) of this section must be followed with respect
to any report or evidence resulting in a conclusion by the Assistant
Secretary that a State has achieved compliance.
(e) The issues considered at the hearing must be limited to those
issues of which the State is notified as provided in Sec. 1386.90 and
paragraph (a) of this section, and new or modified issues described in
paragraph (b) of this section, and may not include issues or parts of
issues removed from the proceedings pursuant to paragraph (c) of this
section.
Sec. 1386.94 Request to participate in hearing.
(a) The Department, the State, the State Council on Developmental
Disabilities, the Designated State Agency, and the State Protection and
Advocacy System, as appropriate, are parties to the hearing without
making a specific request to participate.
(b)(1) Other individuals or groups may be recognized as parties if
the issues to be considered at the hearing have caused them injury and
their interests are relevant to the issues in the hearing.
(2) Any individual or group wishing to participate as a party must
file a petition with the designated individual within 15 days after
notice of the hearing has been published in the Federal Register, and
must serve a copy on each party of record at that time in accordance
with Sec. 1386.85(b) of this part. The petition must concisely state:
(i) Petitioner's interest in the proceeding;
(ii) Who will appear for petitioner;
(iii) The issues the petitioner wishes to address; and
(iv) Whether the petitioner intends to present witnesses.
(c)(1) Any interested person or organization wishing to participate
as amicus curiae must file a petition with the designated individual
before the commencement of the hearing. The petition must concisely
state:
(i) The petitioner's interest in the hearing;
(ii) Who will represent the petitioner; and
(iii) The issues on which the petitioner intends to present
argument.
(2) The presiding officer may grant the petition if he or she finds
that the petitioner has a legitimate interest in the proceedings and
that such participation will not unduly delay the outcome and may
contribute materially to the proper disposition of the issues.
(3) An amicus curiae may present a brief oral statement at the
hearing at the point in the proceedings specified by the presiding
officer. It may submit a written statement of position to the presiding
officer prior to the beginning of a hearing and must serve a copy on
each party. It also may submit a brief or written statement at such
time as the parties submit briefs and must serve a copy on each party.
Hearing Procedures
Sec. 1386.100 Who presides.
(a) The presiding officer at a hearing must be the Assistant
Secretary or someone designated by the Assistant Secretary.
(b) The designation of a presiding officer must be in writing. A
copy of the designation must be served on all parties and amici curiae.
Sec. 1386.101 Authority of presiding officer.
(a) The presiding officer has the duty to conduct a fair hearing,
avoid delay, maintain order, and make a record of the proceedings. The
presiding officer has all powers necessary to accomplish these ends,
including, but not limited to, the power to:
(1) Change the date, time, and place of the hearing, upon notice to
the parties. This includes the power to continue the hearing in whole
or in part;
(2) Hold conferences to settle or simplify the issues in a
proceeding, or to consider other matters that may aid in the
expeditious disposition of the proceedings;
(3) Regulate participation of parties and amici curiae and require
parties and amici curiae to state their positions with respect to the
issues in the proceeding;
(4) Administer oaths and affirmations;
(5) Rule on motions and other procedural items on matters pending
before him or her, including issuance of protective orders or other
relief to a party against whom discovery is sought;
(6) Regulate the course of the hearing and conduct of counsel
therein;
(7) Examine witnesses;
(8) Receive, rule on, exclude, or limit evidence or discovery;
(9) Fix the time for filing motions, petitions, briefs, or other
items in matters pending before him or her;
(10) Make a final decision; and
(11) Take any action authorized by the rules in this subpart or 5
U.S.C. 551-559.
(b) The presiding officer does not have authority to compel the
production of witnesses, papers, or other evidence by subpoena.
(c) If the presiding officer is a person other than the Assistant
Secretary, he or she shall certify the entire record, including
recommended findings and proposed decision, to the Assistant Secretary.
His or her authority is to render a recommended decision with respect
to program requirements which are to be considered at the hearing. In
case of any noncompliance, he or she shall recommend whether payments
or allotments should be withheld with respect to the entire State plan
or the activities of the State's Protection and Advocacy System, or
whether the payments or allotments should be withheld only with respect
to those parts of the program affected by such noncompliance.
Sec. 1386.102 Rights of parties.
All parties may:
(a) Appear by counsel, or other authorized representative, in all
hearing proceedings;
(b) Participate in any prehearing conference held by the presiding
officer;
(c) Agree to stipulations of facts which will be made a part of the
record;
(d) Make opening statements at the hearing;
(e) Present relevant evidence on the issues at the hearing;
(f) Present witnesses who then must be available for cross-
examination by all other parties;
(g) Present oral arguments at the hearing; and
(h) Submit written briefs, proposed findings of fact, and proposed
conclusions of law, after the hearing.
Sec. 1386.103 Discovery.
The Department and any party named in the Notice issued pursuant to
[[Page 19738]]
Sec. 1386.90 of this part has the right to conduct discovery
(including depositions) against opposing parties as provided by the
Federal Rules of Civil Procedure. There is no fixed rule on priority of
discovery. Upon written motion, the presiding officer must promptly
rule upon any objection to discovery action. The presiding officer also
has the power to grant a protective order or relief to any party
against whom discovery is sought and to restrict or control discovery
so as to prevent undue delay in the conduct of the hearing. Upon the
failure of any party to make discovery, the presiding officer may issue
any order and impose any sanction other than contempt orders authorized
by Rule 37 of the Federal Rules of Civil Procedure.
Sec. 1386.104 Evidentiary purpose.
The hearing is directed to receiving factual evidence and expert
opinion testimony related to the issues in the proceeding. Argument
will not be received in evidence; rather, it must be presented in
statements, memoranda, or briefs, as directed by the presiding officer.
Brief opening statements, which shall be limited to a statement of the
party's position and what it intends to prove, may be made at hearings.
Sec. 1386.105 Evidence.
(a) Testimony. Testimony by witnesses at the hearing is given
orally under oath or affirmation. Witnesses must be available at the
hearing for cross-examination by all parties.
(b) Stipulations and exhibits. Two or more parties may agree to
stipulations of fact. Such stipulations, or any exhibit proposed by any
party, must be exchanged at the prehearing conference or at a different
time prior to the hearing if the presiding officer requires it.
(c) Rules of evidence. Technical rules of evidence do not apply to
hearings conducted pursuant to this subpart, but rules or principles
designed to assure production of the most credible evidence available
and to subject testimony to test by cross-examination are applied where
reasonably necessary by the presiding officer. A witness may be cross-
examined on any matter material to the proceeding without regard to the
scope of his or her direct examination. The presiding officer may
exclude irrelevant, immaterial, or unduly repetitious evidence. All
documents and other evidence offered or taken for the record is open to
examination by the parties and opportunity must be given to refute
facts and arguments advanced on either side of the issues.
Sec. 1386.106 Exclusion from hearing for misconduct.
Disrespectful, disorderly, or rebellious language or contemptuous
conduct, refusal to comply with directions, or continued use of
dilatory tactics by any person at the hearing before a presiding
officer shall constitute grounds for immediate exclusion of such person
from the hearing by the presiding officer.
Sec. 1386.107 Unsponsored written material.
Letters expressing views or urging action and other unsponsored
written material regarding matters in issue in a hearing is placed in
the correspondence section of the docket of the proceeding. This
material is not deemed part of the evidence or record in the hearing.
Sec. 1386.108 Official transcript.
The Department will designate the official reporter for all
hearings. The official transcript of testimony taken, together with any
stipulations, exhibits, briefs, or memoranda of law filed with them is
filed with the Department. Transcripts of testimony in hearings may be
obtained from the official reporter by the parties and the public at
rates not to exceed the maximum rates fixed by the contract between the
Department and the reporter. Upon notice to all parties, the presiding
officer may authorize corrections to the transcript which involve
matters of substance. Transcripts must be taken by stenotype machine
and not be voice recording devices, unless otherwise agreed by all of
the parties and the presiding officer.
Sec. 1386.109 Record for decision.
The transcript of testimony, exhibits, and all papers and requests
filed in the proceedings, except the correspondence section of the
docket, including rulings and any recommended or initial decision,
constitute the exclusive record for decision.
Posthearing Procedures, Decisions
Sec. 1386.110 Posthearing briefs.
The presiding officer must fix the time for filing posthearing
briefs. This time may not exceed 30 days after termination of the
hearing and receipt of the transcript. Briefs may contain proposed
findings of fact and conclusions of law. If permitted, reply briefs may
be filed no later than 15 days after filing of the posthearing briefs.
Sec. 1386.111 Decisions following hearing.
(a) If the Assistant Secretary is the presiding officer, he or she
must issue a decision within 60 days after the time for submission of
posthearing briefs has expired.
(b)(1) If the presiding officer is a person designated by the
Assistant Secretary, he or she must, within 30 days after the time for
submission of posthearing briefs has expired, certify the entire record
to the Assistant Secretary including the recommended findings and
proposed decision.
The Assistant Secretary must serve a copy of the recommended
findings and proposed decision upon all parties and amici.
(2) Any party may, within 20 days, file exceptions to the
recommended findings and proposed decision and supporting brief or
statement with the Assistant Secretary.
(3) The Assistant Secretary must review the recommended decision
and, within 60 days of its issuance, issue his or her own decision.
(c) If the Assistant Secretary concludes:
(1) In the case of a hearing pursuant to Sections 124, 127, or 143
of the Act, that a State plan or the activities of the State's
Protection and Advocacy System does not comply with Federal
requirements, he or she shall also specify whether the State's payment
or allotment for the fiscal year will not be authorized for the State
or whether, in the exercise of his or her discretion, the payment or
allotment will be limited to the parts of the State plan or the
activities of the State's Protection and Advocacy System not affected
by the noncompliance.
(2) In the case of a hearing pursuant to Section 127 of the Act
that the State is not complying with the requirements of the State
plan, he or she also must specify whether the State's payment or
allotment will be made available to the State or whether, in the
exercise of his or her discretion, the payment or allotment will be
limited to the parts of the State plan not affected by such
noncompliance. The Assistant Secretary may ask the parties for
recommendations or briefs or may hold conferences of the parties on
these questions.
(d) The decision of the Assistant Secretary under this section is
the final decision of the Secretary and constitutes ``final agency
action'' within the meaning of 5 U.S.C. 704 and the ``Secretary's
action'' within the meaning of Section 128 of the Act (42 U.S.C.
15028). The Assistant Secretary's decision must be promptly served on
all parties and amici.
[[Page 19739]]
Sec. 1386.112 Effective date of decision by the Assistant Secretary.
(a) If, in the case of a hearing pursuant to Section 124 of the
Act, the Assistant Secretary concludes that a State plan does not
comply with Federal requirements, and the decision provides that the
payment or allotment will be authorized but limited to parts of the
State plan not affected by such noncompliance, the decision must
specify the effective date for the authorization of the payment or
allotment.
(b) In the case of a hearing pursuant to Sections 127 or 143 of the
Act, if the Assistant Secretary concludes that the State is not
complying with the requirements of the State plan or if the activities
of the State's Protection and Advocacy System do not comply with
Federal requirements, the decision that further payments or allotments
will not be made to the State, or will be limited to the parts of the
State plan or activities of the State Protection and Advocacy System
not affected, must specify the effective date for withholding payments
or allotments.
(c) The effective date may not be earlier than the date of the
decision of the Assistant Secretary and may not be later than the first
day of the next calendar quarter.
(d) The provision of this section may not be waived pursuant to
Sec. 1386.84.
3. Revise part 1387 to read as follows.
PART 1387--PROJECTS OF NATIONAL SIGNIFICANCE
Section Contents
Sec.
1387.1 General requirements.
Authority: 42 U.S.C. 15001 et seq.
Sec. 1387.1 General requirements.
(a) All projects funded under this part must be of national
significance and serve or relate to individuals with developmental
disabilities to comply with subtitle E of the Act, Sections 161-162 (42
U.S.C. 15081-15083).
(b) The requirements concerning format and content of the
application, submittal procedures, eligible applicants, and final
priority areas will be published in program announcements in the
Federal Register.
(c) In general, Projects of National Significance provide technical
assistance, collect data, demonstrate exemplary and innovative models,
disseminate knowledge at the local and national levels, and otherwise
meet the goals of Projects of National Significance Section 161 (42
U.S.C. 15081).
(d) Projects of National Significance may engage in one or more of
the types of activities provided in Section 161(2) of the statute.
(e) In general, eligible applicants for PNS funding are public and
private non-profit entities, 42 U.S.C. 15082, such as institutions of
higher learning, State and local governments, and tribal governments.
The program announcements will specifically state any further
eligibility requirements for the priority areas in the fiscal year.
(f) Faith-based organizations are eligible to apply for PNS
funding, providing that the faith-based organizations meet the specific
eligibility criteria contained in the program announcement for the
fiscal year.
4. Revise part 1388 to read as follows.
PART 1388--THE NATIONAL NETWORK OF UNIVERSITY CENTERS FOR
EXCELLENCE IN DEVELOPMENTAL DISABILITIES EDUCATION, RESEARCH, AND
SERVICE
Section Contents
Sec.
1388.1 Purpose.
1388.2 Core functions.
1388.3 National Training Initiatives on Critical and Emerging Needs.
1388.4 Applications.
1388.5 Five-year plan and annual report.
Authority: 42 U.S.C. 15001 et seq.
Sec. 1388.1 Purpose.
(a) The Administration on Developmental Disabilities awards grants
to eligible entities designated as Centers in each State to pay for the
Federal share of the cost of the administration and operation of the
Centers. Centers shall:
(1) Provide leadership in, advise Federal, State, and community
policymakers about, and promote opportunities for individuals with
developmental disabilities to exercise self-determination, be
independent, be productive, and be integrated and included in all
facets of community life.
(2) Be interdisciplinary education, research, and public service
units of universities (as defined by the Secretary) or public or not-
for-profit entities associated with universities that engage in core
functions, described in Sec. 1388.2 of this part, addressing, directly
or indirectly, one or more of the areas of emphasis, as defined in
Sec. 1385.3.
(b) To conduct National Training Initiatives on Critical and
Emerging Needs as described in Sec. 1388.3.
Sec. 1388.2 Core functions.
The Centers described in Sec. 1388.1(a)(1) and (2) must engage in
the core functions referred to in Sec. 1388.1(a)(2), which shall
include--
(a) Provision of interdisciplinary pre-service preparation and
continuing education of students and fellows, which may include the
preparation and continuing education of leadership, direct service,
clinical, or other personnel to strengthen and increase the capacity of
States and communities to achieve the purpose of the DD Act of 2000.
(b) Provision of community services. (1) That provide training or
technical assistance for individuals with developmental disabilities,
their families, professionals, paraprofessionals, policymakers,
students, and other members of the community; and
(2) That may provide services, supports, and assistance for the
persons listed in (b)(1) through demonstration and model activities.
(c) Conduct of research, which may include basic or applied
research, evaluation, and the analysis of public policy in areas that
affect or could affect, either positively or negatively, individuals
with developmental disabilities and their families.
(d) Dissemination of information related to activities undertaken
to address the purpose of the DD Act of 2000, especially dissemination
of information that demonstrates that the network authorized under
subtitle D is a national and international resource that includes
specific substantive areas of expertise that may be accessed and
applied in diverse settings and circumstances.
Sec. 1388.3 National Training Initiatives on Critical and Emerging
Needs.
(a) Supplemental grant funds for National Training Initiatives
(NTIs) on Critical and Emerging Needs will be reserved when each Center
described in Section 152 of the DD Act has received a grant award of at
least $500,000, adjusted for inflation.
(b) The grants shall be awarded to Centers to pay for the Federal
share of the cost of training initiatives related to the unmet needs of
individuals with developmental disabilities and their families.
(c) The grants shall be awarded on a competitive basis, and for
periods of not more than 5 years.
Sec. 1388.4 Applications.
(a) To be eligible to receive a grant under Sec. 1388.1 for a
Center, an entity shall submit to the Secretary, and obtain
[[Page 19740]]
approval of, an application at such time, in such manner, and
containing such information, as the Secretary may require.
(b) Each application shall describe a five-year plan, that must
include--
(1) Projected goal(s) related to one or more areas of emphasis
described in Sec. 1385.3 for each of the core functions.
(2) Measures of progress (measures of consumer satisfaction,
improvement, and collaboration) it has established, pursuant to Sec.
1385.5.
(c) The application shall contain or be supported by reasonable
assurances that the entity designated as the Center will--
(1) Meet the measures of progress (measures of consumer
satisfaction, improvement, and collaboration); and
(2) Address the projected goals, and carry out goal-related
activities, based on data driven strategic planning and in a manner
consistent with the objectives of subtitle D, that--
(i) Are developed in collaboration with the consumer advisory
committee established pursuant to paragraph (5);
(ii) Are consistent with, and to the extent feasible complement and
further, the Council goals contained in the State plan submitted under
Section 124 of the DD Act of 2000 and the goals of the P&A System
established under Section 143 of the DD Act of 2000; and
(iii) Will be reviewed and revised annually as necessary to address
emerging trends and needs.
(3) Use the funds made available through the grant to supplement,
and not supplant, the funds that would otherwise be made available for
activities described in Sec. 1388.1(a)(1) and (2) of this part.
(4) Protect, consistent with the policy specified in Section
(101)(c) of the DD Act of 2000 (U.S.C. 15001) (relating to rights of
individuals with developmental disabilities), the legal and human
rights of all individuals with developmental disabilities (especially
those individuals under State guardianship who are involved in
activities carried out under programs assisted under subtitle D).
(5) Establish a consumer advisory committee--
(i) Of which a majority of the members shall be individuals with
developmental disabilities and family members of such individuals;
(ii) That is comprised of--
(A) Individuals with developmental disabilities and related
disabilities;
(B) Family members of individuals with developmental disabilities;
(C) A representative of the State Protection and Advocacy System;
(D) A representative of the State Council on Developmental
Disabilities;
(E) A representative of a self-advocacy organization described in
Section 124(c)(4)(A)(ii)(I) of the DD Act of 2000 (42 U.S.C. Sec.
15024(c)(4)(A)(ii)(I); and
(F) Representatives of organizations that may include parent
training and information centers assisted under Section 671 or 672 of
the Individuals with Disabilities Education Act (20 U.S.C. 1471, 1472),
entities carrying out activities authorized under Section 104 or 105 of
the Assistive Technology Act of 1998 (29 U.S.C. 3003, 3004), relevant
State agencies, and other community groups concerned with the welfare
of individuals with developmental disabilities and their families.
(iii) That reflects the racial and ethnic diversity of the State;
(iv) That shall--
(A) Consult with the Director of the Center regarding the
development of the five-year plan;
(B) Participate in an annual review of, and comment on, the
progress of the Center in meeting the projected goals contained in the
plan;
(C) Make recommendations to the Director of the Center regarding
any proposed revisions of the plan that might be necessary; and
(v) Meet as often as necessary to carry out the role of the
committee, but at a minimum twice during each grant year.
(6) To the extent possible, utilize the infrastructure and
resources obtained through funds made available under the grant to
leverage additional public and private funds to successfully achieve
the projected goals developed in the five-year plan;
(7)(i) Have a director with appropriate academic credentials,
demonstrated leadership, expertise regarding developmental
disabilities, significant experience in managing grants and contracts,
and the ability to leverage public and private funds; and
(ii) Allocate adequate staff time to carry out activities related
to each of the core functions described in Sec. 1388.2.
(8) Educate, and disseminate information related to the purpose of
the DD Act of 2000 to the legislature of the State in which the Center
is located, and to Members of Congress from such State.
(d)(1) All applications submitted under this section shall be
subject to technical and qualitative review by peer review groups as
described under Sec. 1388.4(c)(2) of this part.
(2) Each peer review group shall include such individuals with
disabilities and parents, guardians, or advocates of or for individuals
with developmental disabilities, as are necessary to carry out this
section.
(e)(1) The Federal share of the cost of administration or operation
of a Center, or the cost of carrying out a training initiative,
supported by a grant made under this subtitle D may not be more than 75
percent of the necessary cost of such project, as determined by the
Secretary.
(2) In the case of a project whose activities or products target
individuals with developmental disabilities who live in an urban or
rural poverty area, as determined by the Secretary, the Federal share
of the cost of the project may not be more than 90 percent of the
necessary costs of the project, as determined by the Secretary.
(3) For the purpose of determining the Federal share with respect
to the project, expenditures on that project by a political subdivision
of a State or by a public or private entity shall be subject to the
provisions of 45 CFR part 93 New Restrictions on Lobbying (also see
Sec. 1385.9 Grants administration) and must be considered as an
expenditure of the Center under subtitle D.
Sec. 1388.5 Five-year plan and annual report.
(a) As required by Section 154(a)(2) of the DD Act of 2000, (42
U.S.C. 15064), the application for core funding for a UCEDD shall
describe a five-year plan, including a projected goal or goals related
to one or more areas of emphasis for each of the core functions in
Section 153(a)(2) of the DD Act of 2000 (42 U.S.C. 15063).
(1) For each area of emphasis under which a goal has been
identified, the UCEDD must state in its application the measures of
progress (consumer satisfaction, improvement and collaboration) it has
established, pursuant to Sec. 1385.5 of this part.
(2) If changes are made to the measures of progress established for
a year, the five-year plan must be amended to reflect those changes.
(3) By July 31 of each year, a UCEDD shall submit an Annual Report,
using the system established by ADD. In order to be accepted by ADD, an
Annual Report must meet the requirements of Section 154(e) of the Act
(42 U.S.C. 15064) and, the applicable regulations, and include the
information necessary for the Secretary to comply with Section 105(1),
(2), and (3) of the Act (42 U.S.C. 15005) and any other information
requested by ADD. The Report shall include information on progress made
in achieving the UCEDDs goals for the previous year, including:
(i) The extent to which the goals were achieved;
(ii) a description of the strategies that contributed to achieving
the goals;
(iii) to the extent to which the goals were not achieved, a
description of
[[Page 19741]]
factors that impeded the achievement; and
(iv) an accounting of the manner in which funds paid to the UCEDD
for a fiscal year were expended.
(4) The Report also must include information on proposed revisions
to the goals and a description of successful efforts to leverage funds,
other than funds under the Act, to pursue goals consistent with the
UCEDD program.
(5) Each UCEDD must include in its Annual Report information on its
achievement of the measures of progress established in Sec. 1385.5 of
this part.
[FR Doc. E8-7412 Filed 4-9-08; 8:45 am]
BILLING CODE 4184-01-P