[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;
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(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
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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
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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 activiti