[Federal Register Volume 61, Number 190 (Monday, September 30, 1996)]
[Rules and Regulations]
[Pages 51142-51166]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 96-24508]
[[Page 51141]]
_______________________________________________________________________
Part II
Department of Health and Human Services
_______________________________________________________________________
Administration for Children and Families
_______________________________________________________________________
45 CFR Parts 1385, 1386, 1387, and 1388
Developmental Disabilities Program; Final Rule
Federal Register / Vol. 61, No. 190 / Monday, September 30, 1996 /
Rules and Regulations
[[Page 51142]]
DEPARTMENT OF HEALTH AND HUMAN SERVICES
Administration for Children and Families
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: Final rule.
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SUMMARY: The Department is issuing this final rule for the
Developmental Disabilities Program which implements the Developmental
Disabilities Assistance and Bill of Rights Act Amendments of 1990 and
the 1994 Amendments. The rule includes: Requirements clarifying
redesignation of the Protection and Advocacy system and the appeal
process; requirements on the Protection and Advocacy annual statement
of objectives; State Developmental Disabilities Council
responsibilities and those of the Designated State Agency; and new
program standards for the University Affiliated Programs.
EFFECTIVE DATE: The effective date of these regulations is October 30,
1996. However, affected parties do not have to comply with the
information requirements in Secs. 1386.23(a), 1386.30(c), 1386.32(a),
and 1386.32(b) until the Administration for Children and Families
publishes in the Federal Register the control numbers assigned by the
Office of Management and Budget (OMB) to these information collection
requirements. (Please note that these sections had been previously
approved by OMB but the control numbers for them have expired.)
Publication of the control numbers notifies the public that OMB has
approved these information collection requirements under the Paperwork
Reduction Act of 1995.
FOR FURTHER INFORMATION CONTACT: Elsbeth Wyatt, Administration on
Developmental Disabilities; Telephone: (202) 690-5841 (Voice), (202)
690-6415 (TDD). These are not toll-free numbers. This document will be
made available in accessible formats upon request.
SUPPLEMENTARY INFORMATION:
I. Program History
In 1963, the Mental Retardation Facilities and Construction Act
(Pub.L. 88-164) was enacted to plan activities and construct facilities
to provide services to persons with mental retardation. This
legislation was subsequently amended by the Developmental Disabilities
Services and Facilities Construction Amendments of 1970 (Pub.L. 91-517)
which constituted the first Congressional effort to address the needs
of a group of persons with disabilities designated as developmental
disabilities. The 1970 Amendments defined developmental disabilities to
include individuals with mental retardation, cerebral palsy, epilepsy
and other neurological conditions closely related to mental retardation
which originated prior to age 18 and constituted a substantial
disability. It also created State Planning Councils to advocate for,
plan, monitor and evaluate services for persons with developmental
disabilities; and authorized grants for constructing, administering and
operating University Affiliated Facilities. The legislation authorizing
the Developmental Disabilities program has been revised periodically.
The major changes of note included the following:
(1) The 1975 Amendments (Pub.L. 94-103) deleted the construction
authority, authorized studies to determine the feasibility of having
University Affiliated Facilities establish Satellite Centers,
established the Protection and Advocacy System and added a section on
``Rights of the Developmentally Disabled;''
(2) The 1978 Amendments (Pub.L. 95-602) included a functional
definition of developmental disabilities;
(3) The Developmental Disabilities Amendments of 1984 (Pub.L. 98-
527) added a new emphasis regarding the purpose of the program, to
assist States to assure that persons with developmental disabilities
receive the care, treatment and other services necessary to enable them
to achieve their maximum potential through increased independence,
productivity and integration into the community; and
(4) The 1987 Amendments (Pub.L. 100-146) established an annual
report to Congress on the Developmental Disabilities program. The
Administration on Developmental Disabilities (ADD) compiles this report
using information received from the State Planning Councils, the
Protection and Advocacy Systems, the University Affiliated Programs and
grantees of the Projects of National Significance. Also included in the
1987 Amendments was a special 1990 Report to Congress on the scope and
effectiveness of services provided to persons with developmental
disabilities by State agencies and an analysis of consumer
satisfaction. The State Planning Councils prepared the State Reports to
ADD and this information was used as a basis for the Report to
Congress.
The Developmental Disabilities Assistance and Bill of Rights Act
Amendments of 1990, Pub.L. 101-496, (the Act), extended authorization
of appropriations for programs under the Act through Fiscal Year 1993
and made revisions that:
(1) Add to the purpose of the Act the commitment toward enabling
all people with developmental disabilities, including those with severe
disabilities, to achieve interdependence and inclusion into society;
(2) Strengthen the independence of State Protection and Advocacy
systems;
(3) Establish core awards for University Affiliated Programs
training projects; and
(4) Broaden the purpose of Projects of National Significance to
include supportive living and quality of life opportunities.
The Developmental Disabilities Assistance and Bill of Rights Act
Amendments of 1994, Pub. L. 103-230, (the Act), extended authorization
of appropriations for programs under the Act through Fiscal Year 1996
and made revisions that:
(1) Include findings that emphasize respect for individual dignity,
personal preferences, and cultural differences in the provision of
services, supports and other assistance, and recognize that individuals
with developmental disabilities and their families are the primary
decision-makers regarding services, supports, and other assistance they
receive;
(2) Ensure that individuals from diverse racial and ethnic
backgrounds are fully included at all levels and in all activities
authorized under this Act. This includes language regarding unserved
and underserved populations and ``culturally competent'' services,
supports and other assistance;
(3) Require State Developmental Disabilities Council activities to
promote systemic change, capacity building and advocacy;
(4) Clarify the responsibilities of the State Developmental
Disabilities Council and the Designated State Agency;
(5) Require the Protection and Advocacy System (P&A) to hire and
maintain sufficient numbers and types of qualified staff to carry out
the P&A's function;
(6) Protect the confidentiality of client records;
(7) Require development of new program standards for University
Affiliated Programs; and
[[Page 51143]]
(8) Direct the Secretary to support grants to conduct an
investigation on the expansion of part B programs (State Developmental
Disabilities Councils) to individuals with severe disabilities other
than developmental disabilities.
Public Law 104-183 extends for three years the authorization of
appropriations for programs under the Act through Fiscal Years 1997,
1998, and 1999.
II. Developmental Disabilities Program
A. Federal Assistance to State Developmental Disabilities Councils
Formula grants are made to each State to support State
Developmental Disabilities Councils. The responsibilities of the
Councils are to promote, through systemic change, capacity building and
advocacy activities; the development of a consumer and family-centered,
comprehensive system; and, a coordinated array of services, supports
and other assistance. These activities are designed to achieve
independence, productivity, integration and inclusion into the
community for individuals with developmental disabilities.
B. Protection and Advocacy of the Rights of Individuals With
Developmental Disabilities
Formula grants are made to States for the establishment of a system
to protect and advocate for the rights of individuals with
developmental disabilities. This system must have the authority to
pursue legal, administrative and other appropriate remedies to ensure
the protection of the rights of individuals with developmental
disabilities who are receiving, or who are eligible to receive,
treatment or habilitation services.
C. University Affiliated Programs
Grants are made to universities, or to public or nonprofit entities
associated with a college or university, to establish University
Affiliated Programs (UAPs). Activities of University Affiliated
Programs are to be conducted in a culturally competent manner and
include: interdisciplinary pre-service preparation of students and
fellows; community service activities which include community training
and technical assistance; and the dissemination of subsequent
information and research findings.
D. Projects of National Significance
This program provides funding through grants and contracts to
public or nonprofit private entities for projects which support
national initiatives. Such initiatives include the collection of
necessary data; provision of technical assistance to State
Developmental Disabilities Councils, protection and advocacy systems
and university affiliated programs; and support to other nationally
significant activities, such as employment and housing.
III. Notice of Proposed Rulemaking
The Department published a Notice of Proposed Rulemaking (NPRM) in
the Federal Register on May 18, 1995, (60 FR 26774-26793). Interested
persons were given sixty days in which to send written comments
regarding the proposed rules. During the sixty (60) day comment period
35 letters were received. The comments were sent from: 20 Protection
and Advocacy Systems and the National Association of Protection and
Advocacy Systems (NAPAS); 11 Developmental Disabilities State Councils
and the National Association of Developmental Disabilities Councils
(NADDC); and one University Affiliated Program and the American
Association of University Affiliated Programs (AAUAP).
All written comments were analyzed and form the basis for changes
which the Department has made in these final rules.
Part 1385 contains provisions which apply to all of the
Developmental Disabilities Programs. Part 1386 regulates the two
formula grant programs: Federal Assistance to State Developmental
Disabilities Councils (Part B of the Act) and the Protection and
Advocacy System (Part C of the Act). Part 1387 applies to Projects of
National Significance (Part E of the Act); and Part 1388 applies to
University Affiliated Programs (Part D of the Act).
Summary of Comments and the Department Response
The discussion which follows includes a summary of all comments,
our responses to those comments, and a description of the changes that
have been made in the final rule as a result of the comments. It should
be noted for purposes of these regulations that when the concept of
``days'' is indicated we are considering these as ``calendar days''
unless otherwise specified as ``work days.'' It should be noted further
that we use the initials ``P&A and ``P&As'' frequently in this preamble
for the ease of the reader and the initials stand for protection and
advocacy. The context in which these initials are used lets the reader
know whether it is the system or the agency under discussion. However,
for the most part the ``P&A'' initials refer to the system.
A number of sections of the NPRM were not changed in the final rule
and therefore are not referenced in this preamble. Minor technical
changes were made in some areas for clarification purposes but are not
significant enough to highlight. In addition, we have worked with the
National Center for Mental Health Services, Substance Abuse and Mental
Health Services (SAMHSA), to ensure that as permitted by the
Developmental Disabilities Assistance and Bill of Rights Act, our
requirements are identical or consistent with the SAMHSA requirements
that implement the provisions of the Protection and Advocacy for
Individuals with Mental Illness (PAIMI) Act.
Part 1385--Requirements Applicable to the Developmental Disabilities
Program
Section 1385.1 General
Comments: Some commenters asked that this section be revised to
reflect the fact that the regulations, in addition to governing
protection and advocacy (P&A) activities, impose obligations on service
providers, e.g., access to premises, individuals with developmental
disabilities and their records. It was recommended that requirements in
this part be applicable not only to the Developmental Disabilities
Program components but also to ``facilities, and other entities, that
provide treatment or habilitative services to persons with
developmental disabilities.''
Response: We did not make this change because the purpose of part
1385 is to cover administrative requirements for ADD grantees
(Protection and Advocacy Systems, Developmental Disabilities State
Councils, University Affiliated Programs and Projects of National
Significance).
Section 1385.3 Definitions
Comments: Some commenters fully supported the addition of a
definition of the term ``Protection and Advocacy System''. It was
recommended that a sentence be added to the proposed definition to
state what the specific P&A authority was in regards to the P&A System
under the Developmental Disabilities Act.
Response: We concur with this recommendation. However, in preparing
the final regulation we became concerned that defining the ``Protection
and Advocacy System'' in this way would lead to some confusion. The Act
makes a distinction between the P&A Agency, and the ``Protection and
Advocacy System.'' In order to preserve this distinction, we have
reformulated the provision as the definition ``Protection and Advocacy
Agency'' and have included the suggestion
[[Page 51144]]
concerning the System's authority. In addition, we have included a
definition for ``developmental disabilities''. The reason for adding
the definition is addressed in the discussion for Sec. 1386.19.
Section 1385.9 Grants administration
Comments: Some commenters fully supported the revision to paragraph
(e)(1) of Sec. 1385.9, recommending that the phrase the Secretary
``does not require'' P&As to make disclosures should read ``shall not
require.'' Also, they recommended that we apply this prohibition to
state and other federal agencies.
Response: We concur with the word change suggestion for paragraph
(e)(1). In addition, after carefully reviewing this paragraph again, we
have reworded it and included statutory citations for greater clarity.
Applying these provisions to other state and Federal agencies in all
instances is beyond the authority of the Developmental Disabilities Act
and these regulations. However, ADD will work with other Federal
agencies and state governments on the issue of access to P&A system
client records.
Comments: Some commenters fully supported either omitting or
revising the proposed language of paragraph (e)(2) of Sec. 1385.9. They
indicated that as written the regulation provides that the P&A shall
have the burden of proving compliance with the Act or regulations where
HHS has found, during an audit or other investigation, any evidence of
noncompliance. The proposal's imposition on the P&A of the burden of
proof regarding the agency's compliance was viewed as being at odds
with federal due process protection. Another commenter indicated that
if (e)(2) remains, then the rule contain assurances that those
individuals who, in their official capacity, have access to personally
identifiable client information, be required to keep such information
confidential. Further, commenters suggested a requirement that such
personally identifiable information be destroyed once the audit,
monitoring review, evaluation or other investigation process is
completed.
Response: We revised the proposed language. The regulations
reiterate that the purpose of obtaining personally identifiable client
information is solely to determine that P&As are spending their grant
funds awarded through Part 142 of the Developmental Disabilities Act on
serving exclusively individuals with developmental disabilities. We
have included language indicating that officials who have access to
such information must keep it confidential to the maximum extent
permitted by law and regulations. We did not change the requirement on
burden of proof because we do not agree with the comment that making
the P&A system bear the ultimate burden of proof regarding their
compliance raises due process issues. It is customary that grantees
bear exactly that burden, because usually only they are in possession
of the information necessary to establish compliance.
Part 1386-Formula Grant Programs
Subpart B--State System for Protection and Advocacy of the Rights of
Individuals with Developmental Disabilities
A majority of the comments received by the Administration on
Developmental Disabilities were on this subpart. The following is a
summary of key comments on this subpart and our response:
Although most commenters were supportive of the regulations, many
had specific suggestions, regarding the authority of the P&A systems to
conduct investigations and to gain access to records, facilities and
individuals receiving treatment or habilitation services. ADD has
developed a new section, Sec. 1386.22 Access to Records, Facilities and
Individuals with Developmental Disabilities to address many of these
concerns. The NPRM had this section as Public notice of Federal onsite
review which we have now incorporated in Sec. 1386.21, Requirements of
the Protection and Advocacy System.
Commenters also requested that the regulations be revised to
incorporate similar provisions as those found in the Protection and
Advocacy for Individuals with Mental Illness (PAIMI) Act regulations.
Commenters indicated that the Developmental Disabilities
regulations should be as closely coordinated with the Protection and
Advocacy for Individual with Mental Illness (PAIMI) Act regulations as
possible. ADD concurs with this recommendation and has incorporated
provisions as appropriate.
Many commenters believed it would be useful to repeat the law in
the regulations in order to present a complete picture of all the
requirements rather that just cite the relevant sections of the Act.
ADD recognizes that such information would be operationally helpful but
is not appropriate to include in regulations.
Comments were also received to include additional case law opinions
in the regulations to assist P&As. Such information would be
appropriate for the preamble, however, such language is not included
into the Code of Federal Regulations.
Also, it was suggested that the regulations (or appendix to the
regulations) should list all authorized P&As by name, address,
telephone number and spell out their authority. Comments indicated that
facilities serving individuals with developmental disabilities attempt
to obstruct P&A advocacy efforts by asserting that particular agencies
lack authority. The regulations already cover the issue of P&A
authority and such a listing is not appropriate in regulations. P&As
have a Notice of Grant Award which could be used for this purpose and a
listing of all authorized P&As is available from ADD.
Section 1386.19 Definitions
Comment: A commenter recommended that the proposed definitions of
``full investigations,'' ``probable cause,'' and ``record of an
individual with a developmental disability'' be transferred to new
regulatory sections dealing with facilities and records access. Also
recommended was the inclusion of other definitions for key terms
applied under the statute.
Response: ADD does not concur with these recommendations.
Therefore, the final rule does not incorporate these changes. Section
1386.19 Definitions was developed to cover terms unique to the P&A
system (part 1386). Section 1385.3 contains other definitions of key
terms applied under the statute. To reissue such definitions in
Sec. 1386.19 is duplicative.
Comments: We received several comments to include a definition of
``complaint'' as the receipt of a complaint is one of the bases for
obtaining access to the records of an individual with developmental
disabilities (see sections 142(a)(2)(I) (ii) and (iii)). Recommended
language was also included.
Response: We have included a definition of ``complaint''. This
definition includes media accounts and newspaper articles because,
while such reports are not specifically directed at the P&A system,
they are published with the expectation that public officials
responsible for conditions will act to stop abuse.
Comments: We received comments to include a definition of
``developmental disabilities'' as there is inconsistency from state to
state in determining whether individuals are eligible for the P&A
program. It was recommended that the regulations include an
interpretation on the application of the functional definition of the
Act (section 102(8)) to assist P&As in making eligibility
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determinations, especially for school age children (e.g., attention
deficit problems, learning disabilities and emotional disturbance).
Response: We have included a definition of ``developmental
disabilities'' to reiterate that the P&A system receiving funds under
the Developmental Disabilities Act must use the functional definition
in section 102(8) to determine who they will serve. This determination
shall be done on a case-by-case basis. For example, the diagnosis of
learning disability or attention deficit disorder, like any other
diagnosis, would not in itself be considered a developmental disability
unless it meets the functional definition of the legislation. Any State
eligibility definition of developmental disability or policy statement
which is more restrictive than that of the Act does not apply as the
Act takes precedence. The definition of ``developmental disabilities''
has been placed in Sec. 1385.3 because we believe it is more
appropriate in a section with definitions for words found in all parts
of this rule.
Comments: On the proposed definition of ``probable cause'',
commenters indicated general support but requested that additional
language be included to reiterate that the P&A has exclusive authority
to make probable cause determinations, and that a judicial or other
third party determination is prohibited. Also, commenters requested
language regarding the issue of disclosure on the basis of the P&As
probable cause finding.
Response: We have revised the final rule for greater clarification.
However, we could not make the specific type of edits recommended above
as the context of the Act does not support such interpretations.
Comments: We received several comments to include a definition for
``legal guardian, conservator and legal representative'' and
recommended language was included.
Response: We have included a definition of ``legal guardian,
conservator and legal representative''. The definition follows the
wording of a statement in the Congressional Report on the PAIMI
legislation. ACF adopted it because the protection and advocacy
requirements in the Act parallel Congressional intent.
Comments: Commenters asked that we include definitions for
``abuse'' and ``neglect''.
Response: We concur with this recommendation and have included
these definitions.
Comments: Several commenters recommended changing the proposed
definition of ``full investigations'' and recommended language for
this.
Response: We have revised the definition in accordance with the
recommended language.
Comments: Several commenters recommended that the definition of
record go beyond the transmittal of final reports, that a record also
include discharge plans and the records of a variety of service
providers.
Response: We have deleted this definition in the final rule as we
have now included other definitions (see complaint and facility) and
regulations (new Sec. 1386.22) to reiterate that a record goes beyond a
final report and have clarified the types of facilities involved in
investigations.
Section 1386.20 Designated State Protection and Advocacy System
Comments: We received comments on the proposed P&A redesignation
process, paragraphs (d), (e), and (f) of this section. Commenters
suggested that we provide additional guidance on what constitutes
``good cause'' and that such evidence used to make a redesignation
decision should be presented to the P&A at the time of issuance of both
the initial notice of intent to redesignate and the final redesignation
decision. Commenters also indicated that P&As should be provided access
to information upon which a final redesignation decision was based and
a full opportunity to analyze the information prior to submitting its
appeal to such a decision.
Response: Because there is no formulation which encompasses all of
the possible variations of circumstances serious enough to justify
redesignations, we decided not to attempt to define ``good cause'' in
this regulation. We have modified the guidance we included in the NPRM
to explain that ``good cause'' may include, but is not limited to,
eliminating longstanding or pervasive inefficiency or a substantial
breach of section 142 of the Act, or violations of other State and
Federal requirements, such as 45 CFR part 74.
Comment: Comments were offered on the preamble discussion regarding
governors and P&As consulting and seeking resolution before involving
the public in the redesignation process. Commenters recommended that
such a process should be included in the regulations as this may result
in a much quicker amicable resolution and could obviate resource
intensive battles over redesignation. They further recommended that the
regulations should specify that in the event such attempts at voluntary
resolution was unsuccessful, the designating official must provide a
clarification in writing to this effect, as part of the redesignation
notice. This certification would provide official verification that the
designating official did indeed attempt to resolve the matter through
negotiation.
Response: ADD agrees in concept with the points being raised and
reiterates that consultation between the governors and P&As on the
responsibilities and requirements of the system should be the first
step before initiating the redesignation process. Through such a
meeting, resolution may occur as the State would have an opportunity to
apprise the current P&A system of its actions which constitute ``good
cause'' and remedial steps could be established, possibly negating the
need for the redesignation. However, the determination of such a
meeting being held must be made at the State level. In
Sec. 1386.20(d)(2)(v) language has been included that the public notice
must provide a clear and detailed explanation of the good cause for the
proposed redesignation, including failure to take remedial steps
suggested in consultation(s) with the State, if applicable.
Comment: One commenter recommended that in the initial public
notice the name of the proposed new P&A agency not be included (see
paragraph (d)(2)(vii)).
Response: Such information is considered valuable for the public
input process so the community is aware of who is being considered as
the new P&A agency and can provide comments early on regarding this
organization. Therefore, no such change has been made in the final
rule.
Comment: A commenter recommended that the public notice on a P&A
redesignation must include a statement of assurance that the proposed
new designated State P&A System will continue to serve existing clients
and cases of the current P&A system or refer them to other sources of
legal advocacy as appropriate, without disruption or impairment of the
legal or constitutional rights of clients affected by such
redesignation.
Response: We concur and such language has been included in
Sec. 1386.20(d)(2)(x).
Comment: A commenter indicated that the proposed regulation failed
to provide the current P&A system adequate time to develop and submit
an appeal of redesignation.
Response: We concur and have changed the timeframe from 10 to 20
days in Sec. 1386.20(e)(1).
Comment: A commenter wanted the final phrase of paragraph (e)(3),
``and may provide any additional relevant
[[Page 51146]]
information,'' removed from the regulation.
Response: We do not concur with this recommendation because we
believe it is important to allow submittal of information of relevance
to the situation.
Section 1386.21 Requirements and Authority of the Protection and
Advocacy System
Comments: It was recommended that the title of Sec. 1386.21 be
modified to include the word ``authority'' in support of the goals of
the new regulations to provide guidance to assist P&As to advocate for,
and protect, when required, individuals with developmental
disabilities.
Response: We concur and have revised the title.
Comments: Many commenters recommended that regulatory language be
included in the final rule concerning allotments being used to
supplement and not to supplant the level of non-federal funds available
in the State to investigate and remedy incidents of abuse or neglect or
other rights violations affecting individuals with developmental
disabilities, or which are available to otherwise protect and advocate
the rights of such individuals.
Response: We concur with this recommendation and have included
regulatory language in paragraph (b) of this section of the final rule.
Paragraphs (b)(1), (2), and (3) of the NPRM are now covered in
Sec. 1386.22.
Comments: Commenters recommended that regulatory language be
included in the final rule stipulating that allotments not be used to
support lobbying activities to influence proposed or pending Federal
legislation or appropriations. Suggested language also included
instances in which P&As can perform certain activities which do not
constitute lobbying.
Response: We plan to study this issue in more detail in cooperation
with all interested parties (Federal and Non-Federal) to find the best
approach for addressing concerns about lobbying activities. We will
issue further guidance following these discussions. Paragraph (c) (1),
(3) and (4) of the NPRM are now covered in Sec. 1386.22. Paragraph
(c)(2) is now covered in Sec. 1386.21(e).
Comments: Comments were received on Sec. 1386.21, paragraph (c)(2)
of the NPRM, with recommendations to define ``trained staff'' and
include language regarding training and experience to carry out the
responsibility of the system in accordance with the priorities of the
system.
Response: The determination of trained staff must be made by
individual P&As. Language has been included in Sec. 1386.21(e) to
indicate the P&A system shall have sufficient staff, qualified by
training and experience, to carry out the responsibilities of the
system in accordance with the priorities of the system. Since the
investigation of allegations of abuse, neglect or rights violations is
a priority of the system, the system must have staff appropriately
trained or access to expert consultants to conduct full investigations
of abuse, neglect or rights violations upon the System's determination
of probable cause or if the incidents are reported to the System.
Comments: Comments were received on paragraph (d) of this section,
acknowledging the validity that a P&A system should not implement a
policy or practice restricting the remedies which may be sought on the
behalf of individuals with developmental disabilities. However,
opinions were expressed that P&As should be allowed to choose what
level of remedy to pursue on a case-by-case basis. Such determinations
would be made for such reasons as: (1) Resources; (2) the factual
circumstances of a particular case; and (3) priorities established
through the annual P&A Statement of Objectives and Priorities.
Response: We recognize the concerns expressed and therefore have
revised the regulation at paragraph (c) by using recommended language
to add a final sentence to the regulation which indicates that the
requirement does not prevent the P&A from developing case or client
acceptance criteria as part of the annual priorities identified by the
P&A system as described in Sec. 1386.23(c) of the final rule. The
regulation also indicates that clients must be informed at the outset
of such criteria.
Comments: The comments received on paragraph (e) of this section,
concerned State's interfering with the administration of the Protection
and Advocacy System, e.g., hiring freezes, reductions in force,
prohibitions on staff travel, or other policies which impact staff or
functions funded with Federal funds and would prevent the system from
carrying out its mandates under the Act. It was recommended that the
regulations should clarify that it is the P&A that has the sole
authority to make the determination whether a proposed state policy or
practice would improperly interfere with its operation. Language should
indicate that pending resolution of the matter by appropriate Federal
officials, the P&A need not comply with such a policy or practice.
Also, regulations should be established which outline an expedient
resolution process for such disputes, placing the burden on the State
to establish that the policy in issue does not conflict with the P&A
mandates.
Response: We recognize that P&As administered by state agencies
have had difficulties in spending their Federal money to carry out the
requirements of the P&A system due to state budget policies restricting
the use of funds. On the other hand, to include a provision designating
the P&A the sole authority to make the determinations as to whether a
proposed State policy or practice would improperly interfere with its
operation, would conflict with the intent of Congress evident in the
Act that States play a role in monitoring P&As. (See section 142(a)(4)
and (c)(3)). We have modified this provision (now found at paragraph
(d)) to more clearly cover the States's situation. Regulations on
compliance procedures are covered in part 1386--subpart D--Practice and
Procedure for Hearings Pertaining to States' Conformity and Compliance
with Developmental Disabilities Plans, Reports, and Federal
Requirements.
The language of the NPRM for paragraph (g) of this Sec. 1386.21, is
now found at paragraph (f) unchanged.
Comments: Commenters recommended that regulatory language be
included concerning the issue of ``standing'' which would allow the
system to bring lawsuits in its own right to redress incidents of abuse
or neglect, discrimination and other rights violations impacting on
individuals with developmental disabilities; such individuals need not
be joined as a party to such actions.
Response: We understand the concern with regard to P&A standing and
have addressed this concern in a new Sec. 1386.25 Allowable Litigation
Costs.
Comment: A comment was received to incorporate provisions for an
Advisory Council.
Response: Language has been included in paragraph (g) of this
section regarding P&As that are a public system without a multimember
governing or advisory board. These P&As must establish an advisory
council in order to provide a voice for individuals with developmental
disabilities. The Advisory Council shall advise the P&A on program
policies and priorities and a majority of the membership (including the
chair) shall be comprised of individuals with developmental
disabilities who are eligible for services, or have received or are
receiving services or parents, family members, (including those
representing individuals with developmental disabilities who live in
institutions and
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home and community based settings), guardians, advocates, or authorized
representatives of such individuals.
As noted earlier, the regulation in the NPRM, Sec. 1386.22 Public
notice of Federal onsite review has now been incorporated as paragraph
(h) of this section, 1386.21.
Paragraph (b)(3) of the NPRM of Sec. 1386.21 is now paragraph (i).
The regulation requires the P&A to obtain written consent of the client
requesting assistance or from his or her guardian before releasing
information to individuals not authorized to receive it.
Section 1386.22 Access to Records, Facilities and Individuals with
Developmental Disabilities
Comments: Commenters recommended including a new section on Access
to Records, Facilities and Residents, incorporating PAIMI regulations
as appropriate, and including relevant ADD program regulations from
Sec. 1386.21 of the NPRM.
Response: We concur with this recommendation and have established
Sec. 1386.22 entitled Access to Records, Facilities and Individuals
with Developmental Disabilities. Language has been included based on
the PAIMI regulations. We have included as many points as possible.
In adapting the language of the PAIMI final rule in this section,
we had to make some modifications. We had to separate the provisions
dealing with access to records, access to individuals and the authority
to investigate abuse and neglect. This was necessary because the scope
of authority of P&A Systems under the DD Act is different in each of
these areas; and, in the case of access to facilities, is different
than the PAIMI Act. Under the PAIMI statute, 42 U.S.C. 10805(a)(3), the
P&As ``must have access to facilities in the State providing care or
treatment * * *'' (Emphasis added.) There is no equivalent provision of
the DD Act. That statute provides authority under section 142(a)(2)(H)
to ``have access at reasonable times and locations to any resident who
is an individual with a developmental disability in a facility that is
providing services, support and other assistance to such a resident.''
(Emphasis added.) However, under the DD Act, P&As have authority, under
section 142(a)(2)(B), ``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 * * *.'' We have reasonably interpreted this
provision as authorizing access to facilities when necessary to
complete an investigation of alleged or suspected abuse or neglect.
With respect to Sec. 1386.22(a)(1) and (2), we are interpreting
reference to client to include all those individuals with developmental
disabilities who request assistance from the system or who have died or
whose whereabouts are unknown.
In Sec. 1386.21, paragraph (c)(1) of the NPRM, regulations were
proposed regarding access to records of deceased individuals and the
authority to conduct abuse and neglect investigations. These
regulations have been deleted as this topic is now covered in
Sec. 1386.22 Access to Records, Facilities and Individuals with
Developmental Disabilities, paragraph (a)(2).
Comments: A few comments were received regarding Sec. 1386.21,
paragraph (c)(3) requesting that further guidance be provided in
relation to P&As having access at reasonable times and locations to
individuals with developmental disabilities who reside in public and
private facilities, especially when P&As are investigating incidents of
abuse and neglect.
Response: This regulation is now covered in Sec. 1386.22,
paragraphs (f), (g) and (h). P&As shall have reasonable unaccompanied
access to service recipients at all times necessary to conduct a full
investigation of an incident of abuse, neglect, or violation of rights.
Comments: Several commenters indicated support for the proposed
regulatory language in Sec. 1386.21, paragraph (c)(4), (see
Sec. 1386.22(e) of the final rule) on keeping confidential the names
and identity of individuals who report incidents of abuse and neglect.
A commenter suggested additional requirements regarding
confidentiality.
Response: We did not include the additional language regarding
confidentiality as the language suggested went beyond the authority of
the Developmental Disabilities Act and the Protection and Advocacy
System.
Comments: Several commenters requested including regulations to
indicate that the provisions regarding access of records under the
Developmental Disabilities Act and regulations take precedence over
other Federal statutes and regulations. If that was not possible,
commenters wanted language to specifically reference the Federal
Education Rights and Privacy Act (FERPA) which sets out certain
restrictions on the release of records by educational institutions (20
U.S.C. 1232(g)); 34 CFR part 99.
Response: We did not include such a provision because such a
requirement goes beyond the authority of the Developmental Disabilities
Act and these regulations. However, we have included language
comparable to PAIMI provisions at Sec. 1386.22(i) on Delay or Denial of
Access. If a system is denied access to facilities and its programs,
individuals with developmental disabilities, or records covered by the
Act or these regulations, it shall be provided promptly with a written
statement of reasons, including, in the case of a denial for alleged
lack of authorization, the name and address of the legal guardian,
conservator, or other legal representative of an individual with
developmental disabilities.
Section 1386.23 Periodic Reports: Protection and Advocacy System
Comments: Commenters requested that P&As be allowed to submit the
Statement of Objectives and Priorities (SOP) Report (paragraph (c)) and
the Program Performance Report (paragraph (a)) at the same timeframe,
by January 1 of each year.
Response: We concur with this recommendation and the final rule has
been revised accordingly.
Comment: A comment was received on paragraph (c)(5) of the NPRM now
(c)(2) regarding the requirement for the P&As to report on how the
system operates and coordinates with other Federal Protection and
Advocacy programs. It was recommended that such a requirement may not
be appropriate for an individual P&A system based on the State's
priorities.
Response: We concur with this recommendation and have deleted the
lengthy list of programs indicating that where applicable, the SOP
provide such information on other Federal advocacy programs. We have
also deleted the references to the Council and UAPs as such information
on advocacy activities will be obtained through the requirements of
paragraph (d) (3), (4), and (5).
Comment: A comment was received on the structure of paragraph (c)
in relation to the SOP and the level and type of administrative
information required for the public input process. A recommendation was
also made that regulatory language be included to reiterate that one of
the critical functions of the SOP and the public comment process was to
establish caseload priorities unique to each State and as such the P&As
have the authority to turn down a request for assistance when it is
outside the scope of the SOP.
Response: We concur with these recommendations and have
restructured the final rule accordingly. We have included regulatory
language that when a P&A turns down a request for
[[Page 51148]]
assistance because it is outside the scope of the SOP, they must inform
individuals that this is the basis for turning them down.
Comments: We received a few comments that the language of the
phrase ``publication of general distribution'' in paragraph (d)(2) on
the public review process for the Statement of Objectives and
Priorities (SOP) was too prescriptive.
Response: We have deleted the word ``publication'' and have revised
the language to indicate that the P&As provide for a broad distribution
of the proposed SOP.
Section 1386.24 Non-Allowable Costs for the Protection and Advocacy
System
Comment: A comment was received on Sec. 1386.24 paragraph (a)(1)
regarding allowable costs for the P&As on issues which relate to a
disability but also may be faced by the general population.
Response: We have included language to cite examples of such
activities which would not be considered allowable costs for the P&As,
such as the preparation of wills, divorce decrees and real estate
proceedings. Language has been included on allowable costs in cases
which relate to an individual with a disability but may also be faced
by the general population. In such cases P&As may provide disability
related technical assistance information and referral to appropriate
programs and services.
We made additional edits for clarification purposes concerning
attorney fees that must be considered as income, by adding to the last
sentence of paragraph (b) ``earned by contractors''.
Section 1386.25 Allowable Litigation Costs. (New)
Comments: A number of the commenters urged that the regulations
clarify whether or not a P&A has standing to take legal action in its
own name.
Response: The legislative history of the 1994 Developmental
Disability Act Amendments (S. Rep. 120, 103rd Cong., 1st Sess. 39-40
(1993) supports the conclusion that, without showing injury to itself,
a P&A does have standing to bring suit on behalf of persons with
disabilities. Although Congress has not amended the Developmental
Disability Act to insert a right of standing, the Committee commented
that ``the current statute is clear that P&A systems have standing to
pursue legal remedies to ensure the protection of and advocacy for the
rights of individuals with developmental disabilities within the
State.'' Additionally, we note that the following courts have affirmed
the P&A's independent standing: Goldstein v. Coughlin, 83 F.R.D. 613
(W.D.N.Y. 1979); and Hershberger v. Missouri Protection and Advocacy
Services, Inc., No 48169 (MO Ct. of Appeals, August 2, 1994).
We wish to make it clear through these regulations that allotments
may be used to pay the otherwise allowable costs incurred by a
Protection and Advocacy System in bringing lawsuits in its own right to
redress incidents of abuse or neglect, discrimination and other rights
violations impacting on individuals with developmental disabilities.
Subpart C--State Plan for Assisting in the Development of a
Comprehensive System of Services and Supports for Individuals With
Developmental Disabilities
Comments: Several commenters stated that the wording of the title
of subpart C should be consistent with the language of the statute.
Response: We concur and have revised the title of subpart C to
read, ``Subpart C--Federal Assistance to State Developmental
Disabilities Councils''.
Section 1386.30 State Plan Requirements
Comments: We received several comments regarding paragraph (a) of
Sec. 1386.30, State Plan requirements. Overall, commenters approved of
the proposed language which emphasized that the State Plan is the
responsibility of the Council. However, commenters indicated that the
regulations should reflect that DD Councils approve the State Plan for
submission to ADD.
Response: The final rule indicates that the annual development of
the State Plan and applicable annual amendments are responsibilities of
the State Developmental Disabilities Council. The Council will provide
opportunities for public input during the planning and development of
the State plan, and will consult with the Designated State Agency to
determine that the plan is not in conflict with applicable State laws
and to obtain appropriate State Plan assurances. Requirements regarding
State Plan submission and approval are covered in Sec. 1386.31, State
Plan submittal and approval.
Comments: A commenter indicated that the last sentence of the
proposed rule at Sec. 1386.30(a) should be moved to Sec. 1386.30(c)
where other regulations pertaining to the Designated State Agency are
covered in relation to the State Plan. This sentence addressed the area
of the Designated State Agency providing support services as requested
by and negotiated with the Council.
Response: We have developed regulatory language to address this
issue in paragraph (a), Sec. 1386.34, Designated State Agency. The
Designated State Agency shall provide the assistance required under
section 124(d)(3) of the Act in developing the State Plan.
Comments: We received several comments on paragraph (c)(1) of
Sec. 1386.30. Commenters approved of the proposed regulations on
identification of program unit(s), as written. However, a commenter
indicated that requiring the identity of the program unit(s) within the
Designated State Agency or office within the State went beyond the Act
and was burdensome on the State. We also received recommended language
to address the fact that in some States, State agencies other than the
Designated State Agency provide services. Also, Councils are now
allowed to use other organizations, including private ones, to provide
fiscal and other support services.
Response: Because administration ties to more than one State agency
are possible, we have not changed the proposed regulatory language to
identify the program unit(s) within the Designated State Agency
responsible for providing assurances and fiscal and other support
services. We have included language pursuant to section 124(d)(4)(C) of
the Act to address the fact that Councils may use or contract with
State agencies other than the Designated State agency in securing
support services. This language was inserted in Sec. 1386.34(e) as this
section on the Designated State Agency is more appropriate for this
requirement. We did not include language covering the use of private
agencies as we could not find any such reference in the statute or
conference report language.
Comments: Several comments were received on paragraph (c)(3).
A commenter supported the proposed regulation which focused on the
Council reporting through the State Plan on the collaborative efforts
of the Council, the Protection and Advocacy Systems and the University
Affiliated Programs to bring about systems change to benefit
individuals with developmental disabilities, and, where appropriate,
individuals with other disabilities.
Other commenters did not agree with the proposed regulation.
Primarily, the concern was that there was no legislative basis for this
State Plan reporting requirement to be prepared by the Councils. While
it was viewed as a worthwhile goal to encourage collaboration and
cooperation between
[[Page 51149]]
the Councils, Protection and Advocacy Systems and the University
Affiliated Programs, commenters did not believe that this should be
added as a requirement for the State Plan. One suggestion was to make
this discretionary by adding the phrase ``where applicable'' to the
regulation. Also, a few commenters indicated the phrase ``Developmental
Disabilities Network'' should not be used as there was no statutory
definition.
Response: Recognizing the concerns raised by the comments received
we revised the final rule to include the phrase ``where applicable''
and have deleted the phrase ``Developmental Disabilities Network''.
Commenters indicated that there was no legislative basis for this State
Plan reporting requirement to be prepared by the Councils. Please note
section 122(c)(5)(N) of the Act provides ``* * * the plan shall contain
such additional information and assurances as the Secretary may find
necessary to carry out the provisions and purposes of this part.'' We
want to reiterate that though Protection and Advocacy Systems and
University Affiliated Programs have individual roles and
responsibilities that are separate and distinct from each other and the
Developmental Disabilities Council, the Act requires their membership
on the Council. Council reporting of collaborative efforts through the
State Plan highlights the systems change role of the Council. It should
also be noted that these final rules contain requirements for both the
Protection and Advocacy Systems and the University Affiliated Programs
to document collaborative efforts with the Developmental Disabilities
Council (see Sec. 1386.23 Periodic Reports, Statement of Objectives and
Priorities, (c) and (d) (3), (4), and (5); Sec. 1388.1 Definitions,
collaboration and Sec. 1388.4 Program criteria-governance and
administration, paragraph (k)).
Comments: Comments on the proposed language regarding short-term
demonstrations, paragraph (e), Sec. 1386.30 State Plan requirements,
concerned the specific time-frame limitation of three years. Commenters
recognized that Councils should not be in the service delivery
business, however, Councils indicated that they needed more flexibility
to fund systems change projects such as advocacy training for longer
periods of time. Adding the phrase ``direct care projects'' and
``direct services'' were recommended to address these points.
Also, language was recommended to include information on estimated
project duration and a description of how the services will be
continued without Developmental Disabilities program funds in the State
Plan.
Response: In the final rule, we used language from ADD-IM-95-2,
issued February 20, 1995, Use of Part B Funds in Funding Time-Limited
Demonstrations and Other Projects in which we addressed the issue of
Council funds supporting on-going direct services. We appreciate the
commenters reaffirmation that Councils should not be in the service
delivery business. We also recognize the concerns raised through the
comments so we have included the reference to ``direct services'' and
have deleted the time-frame of three-years to allow for greater Council
flexibility (see paragraph (e)(1)). The final rule also reflects the
comments on the State Plan information regarding such demonstration
projects (see paragraph (e)(2)).
Comments: Several comments were received on paragraph (f)(4) of
Sec. 1386.30 State Plan requirements, which addressed budgeting, staff
hiring and supervision and staff assignment. Commenters indicated that
there continues to be State interference regarding the work of the
Councils. The commenters overall concern with the proposed language was
that in our attempts to clarify ``consistent with State law'' we went
beyond the intent of the statutory change, which was to provide
Councils with more flexibility than most States provide in their
budgeting and personnel activities.
Response: We have not revised the proposed language of the NPRM in
the final rule. Such language reiterates that the State Developmental
Disabilities Council shall follow the requirements of section 124(c)
(8), (9), and (10) regarding budgeting, staff hiring and supervision
and staff assignment. In relation to the concerns about State
interference, we have included regulations to cover this issue, in
paragraph (a) of Sec. 1386.34, Designated State Agency.
Section 1386.31 State Plan Submittal and Approval
Comments: We received comments on paragraphs (a) and (b) of the
proposed regulations for Sec. 1386.31 State Plan submittal and
approval. Overall, the comments indicated that two rounds of public
hearings were overly complex and burdensome and created too long a
timeframe for the State Plan preparation. An issue was raised as to why
public notices would be from the Governor or the Governor's designee as
the development/preparation of the State Plan is the responsibility of
the Council. Also, comments expressed concern as to why the Governor
was still referenced as approving the State Plan.
Response: We concur with the comments that the process should be
simplified and that the Council should perform all requirements tied to
the preparation and submission of the State Plan. Paragraph (a) of the
final rule has been revised to indicate that the Council shall issue a
public notice about the availability of the proposed State Plan or
State Plan amendment(s) for comment and that there is only one 45 day
review period. The notice shall be published in accessible formats. The
Council would then take into account the comments received and respond
in the State Plan to significant comments and suggestions. The rule
then indicates that a summary of the Council's response to the State
Plan comments shall be submitted with the State Plan and made available
for public review. This document shall be made available in accessible
formats upon request. We recognize that the 1994 amendments greatly
increase the independence of Councils but it seems questionable whether
the amendments were meant to deprive the Governor of his or her
authority to give the plan final approval. Upon further review, we
decided to delete paragraph (b) of the NPRM and to keep the language of
the paragraph in the current regulation on this matter, which is now
paragraph (a) in the current regulations but will be renumbered
paragraph (b) when this final rule is codified.
Section 1386.32 Periodic Reports: Federal Assistance to State
Developmental Disabilities Councils
Comments: We received comments on paragraph (b) of this section
opposing the Program Performance Report being in a mandated format.
Response: We concur with the comments on the Council Program
Performance Report and have revised paragraph (b) of the final rule to
indicate that pursuant to section 107(a) of the Act (42 U.S.C 6006a),
the State Developmental Disabilities Council shall submit an Annual
Program Performance Report in a form that facilitates Council reporting
of results of activities required under sections 122 and 124 of the
Act. The report shall be submitted to the appropriate Regional Office,
by January 1 of each year. At this time ADD is working with Councils on
the development of reporting guidelines that will result in program
performance measures as required by the Government Performance Results
Act (GPRA) and such guidelines will also be used as part of an ADD
Management
[[Page 51150]]
Information System where reporting could be done electronically.
Section 1386.33 Protection of Employee's Interests
Comments: We received several comments on this section. One
commenter asked that we include the term ``assurance'' to highlight
that this is an assurance tied to the State Plan. Two other commenters
wanted the current regulation to stand. One commenter wanted
significant policy changes made to the current regulation.
Response: We included the term ``assure'' in this section as
requested. However, we have not changed the rest of the proposed
section as it is current policy based on section 122(c)(5)(K) of the
Act (42 U.S.C. 6022).
Section 1386.34 Designated State Agency
Comment: A comment was received regarding the responsibilities of
the Designated State Agency and the State Plan as included in
Sec. 1386.30.
Response: Paragraph (a) of this section reiterates that the
Designated State Agency shall provide the assistance required under
section 124(d)(3)(C) of the Act in developing the State Plan.
Paragraphs (b), (c), and (d) reflect the appeals process. Only
editorial changes were made in the final rule. It should be noted that
ADD, for purposes of convenience in drafting this section, has referred
to the appeal by ``a majority'' of the non-State agency members of the
Council as an appeal by the ``Council''.
Section 1386.35 Allowable and Non-Allowable Costs for Federal
Assistance to State Developmental Disabilities Councils
Comment: Comments were received with suggested language to revise
paragraph (d) (2) and (3) of this section regarding variable match on
an activity by activity basis.
Response: We have modified the language of the NPRM as follows: In
paragraph (d)(1) we have revised the phrase ``priority area'' to
``projects or activities'', in relation to expenditures which require
no non-Federal aggregate participation. Paragraph (d)(2) indicates that
expenditures for ``priority areas'' now reads ``projects with
activities or products targeted to urban or rural'' poverty areas but
not carried out directly by the Council and Council staff, as described
in section 125A(a)(2) of the Act, shall have non-Federal participation
of at least 10% in the aggregate. The suggested language to include the
phrase ``The Council may elect to have a lower, or no match, for such
priority area activities'' was not included, see paragraph (d)(4).
Paragraph (d)(3) has been edited to provide that all other activities
not directly carried out by the Council and Council staff shall have
non-Federal participation of 25% in the aggregate. In accordance with
comments, a new paragraph (d)(4) has been added to indicate that the
Council may vary the non-Federal participation required on a project by
project or activity by activity basis (both poverty and non-poverty
activities), including allowing no non-Federal participation from
particular projects or activities as the Council deems appropriate so
long as the requirement for aggregate non-Federal participation is met.
Section 1386.37 Public Notice of Federal Onsite Review
Comments: We received a few comments indicating that this
requirement is not statutorily based for State Developmental
Disabilities Councils and that these reviews would place an
inappropriate burden on grantees for an activity that is the
Administration on Developmental Disabilities responsibility.
Response: We concur with the comments. This requirement has been
dropped.
Additional Comment: We received a comment to include language in
regulation to clarify that Councils may provide information to
policymakers pursuant to section 124(c)(4)(I) of the Act and that such
activities do not constitute lobbying.
Response: We plan to study this issue in more detail in cooperation
with all interested parties (Federal and Non-Federal) to find the best
approach for addressing concerns about lobbying activities. We will
issue further guidance following these discussions.
Part 1387--Projects of National Significance
Section 1387.1 General Requirements
Comments: A few comments were received on paragraph (d) of this
section. One commenter supported the language but indicated that some
national projects such as national surveys of program costs may not be
appropriate for local replication. The other commenter indicated that
all Projects of National Significance should be exemplary and
innovative, including all technical and data collection projects.
Response: We concur with the comment regarding local replication,
which is why the NPRM language included a reference to projects which
``otherwise meet the goals of part E of the Act''. Therefore no
language change is necessary with respect to local replication. We also
concur with the comment regarding all projects being exemplary and
innovative and we have revised the final rule accordingly.
Part 1388--University Affiliated Programs
Section 1388.1 Definitions
Comment: A commenter wanted the first example included in the
definition of ``capacity building'' to be revised to delete the
reference to the dental school and add language on the recruitment of
individuals with developmental disabilities and their families, local
community leaders, additional faculty and students to participate in
the UAP.
Response: We concur with this recommendation and have revised the
definition of capacity building accordingly.
Comment: A few commenters wanted to add the term ``cultural
diversity'' to the definition section. The language would read,
``Cultural diversity means that UAPs are characterized by their
commitment to involve individuals with disabilities, family members and
trainees from diverse cultural backgrounds in all levels of their
activities. This commitment to cultural diversity means that each UAP
must assure that individuals from racial and ethnic minority
backgrounds are fully included; that efforts are made to recruit
individuals from minority backgrounds into the field of developmental
disabilities; that specific efforts must be made to ensure that
individuals from minority backgrounds have effective and meaningful
opportunities for full participation in the developmental disabilities
service system; and that recruitment efforts at the levels of
preservice training, community training, practice, administration and
policymaking must focus on bringing larger numbers of racial and ethnic
minorities into the field in order to provide appropriate skills,
knowledge, role models, and sufficient personnel to address the growing
needs of an increasingly diverse population.''
Response: We concur with the addition of this term and the language
as written. Therefore, ``cultural diversity'' has been included in the
final rule.
Comment: A comment was received on the definition of ``culturally
competent manner'' with the request to drop the word ``manner''.
Response: We concur with this edit and have revised the final rule
accordingly.
[[Page 51151]]
Comment: A comment was received on the definition of ``lifespan
approach'' with the request to revise the language that UAP activities
address the needs of individuals with disabilities who are ``all'' ages
rather than ``various'' ages.
Response: We concur with this wording and the final rule has been
revised.
Comment: A commenter wanted to include the term ``research and
evaluation'' to the definition section. The language would read,
``Research and evaluation means the UAP refines its activities on the
basis of evaluation results. As members of the university community,
involvement in program-relevant research and development of new
knowledge are important components of UAPs.''
Response: We concur with the addition of this term and the language
as written. Therefore, ``research and evaluation'' has been included
into the final rules.
Section 1388.2 Program Criteria--Purpose
The program criteria of the final rule are considered as the
standards for the UAPs and include performance standards (see section
153(b) of the Act).
Comments: A few commenters requested that the regulations include
language that the program criteria are one part of the Quality
Enhancement System (QES) and provide a structure for self-assessment
and peer review of each UAP.
Response: We concur with these recommendations and have changed the
final rule to reflect these points. The QES was developed by ADD in
response to amendments to the Act. These amendments include a series of
quality assurance provisions for the UAP network. The QES is a holistic
approach to the development and maintenance of programs and services to
enable persons with developmental disabilities and their families to
achieve maximum potential. All UAPs use the QES.
Section 1388.3 Program Criteria--Mission
Comments: A few commenters wanted the language of the NPRM
regarding the Introduction to mission, Sec. 1388.3(a) revised to: (1)
Add language that the UAP is guided by the values of independence,
productivity, integration and inclusion of individuals with
developmental disabilities and their families and (2) include
``research and evaluation'' in the listing of activities to be
performed by UAPs. Also, the commenters recommended that the language
concerning the ``mission statement'' be removed.
Response: We concur with the recommended text and have incorporated
such language in the final regulation.
Comment: A comment was received on paragraph (b) of this section
requesting the word ``promotes'' be included before the phrase ``goals
of the university'' and that a listing of such goals be included,
``training, the development of new knowledge, and service.''
Response: We concur with this language and have changed the final
rule accordingly.
Comment: In paragraph (e) of this section we received a comment
requesting that we use the term ``mission'' rather than the phrase
goals, objectives, and activities and delete the word ``services'' and
replace it with the word ``attitudes''.
Response: We concur with these recommendations and have
incorporated this change in the final rule.
Comment: In paragraph (g) of this section we received a comment to
include the phrase ``be consistent with the mission statement'' in
relation to the UAP's goals, objectives, and activities.
Response: We agree with the recommended language and the final rule
has been revised.
Section 1388.4 Program Criteria--Governance and Administration
Comment: A commenter wanted the language of the NPRM revised
regarding the Introduction to governance and administration,
Sec. 1388.4(a). The revision centered around the inclusion of the
phrase independence, productivity, integration and inclusion of
individuals with developmental disabilities and their families.
Response: We concur with the recommended text and have incorporated
such language in the final regulation.
Comment: A commenter wanted the proposed language in paragraph (f)
expanded to include language indicating UAP senior professional staff
contribute to the university by participation on university committees,
collaboration with other university departments, and other university
community activities.
Response: We concur with the added language and have revised the
final regulation accordingly.
Comment: A comment was received on paragraph (q) regarding the use
of the phrase ``strategic planning''. This phrase is viewed as a
trademark so the phrase ``long range planning'' was suggested as a more
useful term.
Response: We agree with the recommended language and the final rule
has been changed.
Comment: A comment was received regarding paragraph (r) requesting
that ``UAP'' be inserted for clarification on which programs and
services are being evaluated.
Response: We concur with this edit and have modified the final
rule.
Comment: We received a recommendation for two additional program
criteria for this section regarding (1) UAP activities, programs, and
products being accessible to individuals with developmental
disabilities, families and the community and (2) commitment of the UAP
Director to the field of developmental disabilities.
Response: Regarding the comment on additional program criteria on
accessibility, this is adequately covered in Sec. 1385.9 of the current
regulation, Grants Administration Requirements, which cross references
to 45 CFR part 84, Nondiscrimination on the Basis of Handicap in
Program and Activities Receiving or Benefiting from Federal Financial
Assistance. With respect to the comment on adding program criteria for
the commitment of the UAP program Director, we have added paragraph (s)
which states that the UAP Director must demonstrate commitment to the
field of developmental disabilities and leadership and vision in
carrying out the mission of the UAP. There have been instances where
the current UAP Director has been replaced by the University with
someone who has experience in the health/medical field but none in the
social services field. It is important that the director know all
aspects of the field of developmental disabilities because UAPs must
develop and execute inter-disciplinary training for people going into
the field of developmentally disabilities which includes, social
workers, teachers, paraprofessionals, etc., not just medical personnel.
Section 1388.5 Program Criteria--Preparation of Personnel
Comment: In relation to paragraph (a), program criteria on UAP
interdisciplinary training programs, a commenter wanted the phrase ``at
the preservice level'' deleted and the phrase ``reflect state-of-the-
art practices'' be used in its place. Also, it was recommended that the
phrase ``to promote the independence, productivity, integration and
inclusion of individuals with developmental disabilities and their
families'' be referenced.
[[Page 51152]]
Response: We concur with these recommendations and have made these
changes to the final regulations.
Comment: A commenter recommended revised language for paragraph
(b). That paragraph read as follows with the added language in quotes:
(b) Interdisciplinary training programs must be based on identified
personnel preparation needs ``and have identified outcomes that are
consistent with the mission and goals of the UAP.''
Response: We concur with the recommended language and have modified
the final regulation accordingly.
Comment: A comment was received regarding paragraph (c) with the
suggestion being made that the term ``academic'' be included in
relation to trainees receiving credit for participation in UAP training
programs.
Response: We concur with this change and have added this word to
the final language.
Comments: A few commenters requested that paragraph (e) be revised
to include language that the UAP must encourage graduates to work in
``situations where they promote the independence, productivity,
integration and inclusion of people with developmental disabilities and
their families.''
Response: We agree with this recommendation and have revised the
regulation accordingly.
Comment: A commenter wanted a new program criteria regarding
training and research and dissemination efforts added to this section.
Response. We have reviewed the suggested language and concur with
most of the ideas presented but have edited the language. We did not
include the phrase ``trainees may become active participants in the
creation of new knowledge throughout their careers'' as this language
does not relate to the compliance of the UAP and training requirements
under the Act. We have included this criteria as paragraph (h) of
Sec. 1388.5 in the final rule. It reads: (h) The UAP core curriculum
must prepare trainees to be active participants in research and
dissemination efforts. In addition, the curriculum must prepare
trainees to be consumers of research as it informs practice and policy.
Section 1388.6 Program Criteria--Services and Supports
Comment: We received several comments on paragraph (a) of this
section, Introduction to services and supports. It was recommended that
we include language that the UAP engage in a variety of system
interventions and may also engage in a variety of individual
interventions ``to promote independence, productivity, integration and
inclusion of individuals with developmental disabilities and their
families.''
Response: We concur with this recommendation and have changed the
regulation accordingly.
Comment: We received a comment on paragraph (b) of this section
requesting significant changes to the NPRM language.
Response: We concur with the recommended language for
Sec. 1388.6(b) and have incorporated the language into the final rule.
The revised language indicates that UAP community training and
technical assistance activities must: (1) Use capacity building
strategies to strengthen the capability of communities, systems and
service providers; (2) plan collaboratively; (3) target to a wide range
of audiences, including individuals with disabilities, family members,
service and support personnel, and community members; (4) plan and be
structured in a manner that facilitates the participation of targeted
audiences; and (5) address the unique needs of individuals with
developmental disabilities and their families from diverse cultural and
ethnic groups.
Comment: A commenter requested the addition of a sentence to the
language proposed in paragraph (c)(1) of this section indicating that
``the UAP must maintain cooperative relationships with other community
service providers, including specialized state and local providers,
including specialized state and local provider agencies.''
Response: We concur with the recommended language and have
incorporated it into the final rule.
Section 1388.7 Program Criteria--Dissemination
Comment: In paragraph (a) of this section, a commenter recommended
that the phrase ``best practices'' be added to the criteria regarding
dissemination of information. Also, two comments were received
requesting the addition of the following language. ``Dissemination
activities promote the independence, productivity, integration and
inclusion of individuals with developmental disabilities and their
families.''
Response: We concur with these recommendations and have revised the
final rule accordingly.
Comment: A commenter asked that we include in paragraph (b)
reference to the fact that the UAP must be identified ``by individuals
with developmental disabilities and their families, community members,
state agencies and other provider and advocacy organizations'' as a
resource for information, produce a variety of products to promote
public awareness and visibility of the UAP, and facilitate replication
of best practices.
Response: We agree with the suggested addition and have included it
in the final rule with some modification for clarification purposes.
Comment: A commenter requested another program criteria for this
section.
Response: We concur and have placed the following language in
paragraph (i) of this section: (i) The UAP must contribute to the
development of knowledge base through publications and presentations,
including those based on research and evaluation conducted at the UAP.
Section 1388.9 Peer Review
Comment: A commenter requested that we include language in
paragraph (a) of this section which indicates that the peer review
process is ``to provide the UAP with technical assistance and other
recommendations to improve program quality and enhance response to
program mandates.''
Response: We do not concur with this language to be included in the
final regulation. The provision of technical assistance is an
administrative function of the Administration on Developmental
Disabilities and is provided on an as needed basis. The Program
Criteria are requirements for the University Affiliated Program, not
the administering agency.
Impact Analysis
Executive Order 12866
Executive Order 12866 requires that regulations be reviewed to
ensure that they are consistent with the priorities and principles set
forth in the Executive Order. The Department has determined that this
rule is consistent with these priorities and principles. An assessment
of the costs and benefits of available regulatory alternatives
(including not regulating) demonstrated that the approach taken in the
regulation is the most cost-effective and least burdensome while still
achieving the regulatory objectives.
The final rule amends current regulation to implement changes made
by the Developmental Disabilities Assistance and Bill of Rights Act
Amendments of 1990 (Pub. L. 101-496 and by the 1994 Amendments (Pub. L.
103-230). The regulations provide guidance on redesignation of the
Protection and Advocacy agency and the appeal process; include
regulations on the Protection and Advocacy annual statement of
objectives; address State
[[Page 51153]]
Developmental Disabilities Council responsibilities and those of the
Designated State Agency; set new program standards for the University
Affiliated Program; and make other clarifying, technical, and
conforming changes.
We estimate that these regulations will not result in additional
costs to the Federal government, the States, universities and any other
organizations to which they may apply.
Regulatory Flexibility Act of 1980
Consistent with the Regulatory Flexibility Act (5 U.S.C. Ch.6), we
try to anticipate and reduce the impact of rules and paperwork
requirements on small businesses. For each rule with a ``significant
economic impact on a substantial number of small entities'', we prepare
an analysis describing the rule's impact on small entities. The primary
impact of these regulations is on the States, which are not ``small
entities'' within the meaning of the Act. However, they will affect
small private institutions providing services to individuals with
developmental disabilities. This impact will be minimal in that the
institutions will simply be subject to review at no cost when a
complaint is made against them. For these reasons, the Secretary
certifies that these rules will not have a significant impact on a
substantial number of small entities.
Paperwork Reduction Act
Under the Paperwork Reduction Act of 1995, no persons are required
to respond to a collection of information unless it displays a valid
OMB control number. The valid OMB control number assigned to the
collection of information in these final regulations is displayed at
the end of the affected section of the regulations.
This rule contains a new information collection requirement at
Sec. 1386.23(c), an annual statement of objectives and priorities of
the Protection and Advocacy system pursuant to section 142(a)(2)(C) of
the Act (42 U.S.C. 6042(a)(2)(C)). OMB cleared this requirement, under
control number 0970-0132 with an expiration date of August 31, 1998.
This final rule also contains an information collection requirement at
Sec. 1386.23(b) for which there is a current OMB control number 0348-
0039 (Standard Form 69). With regard to the remaining requirements
highlighted in the NPRM, for which OMB control numbers have expired,
ADD will submit them to OMB for reapproval in accordance with the
requirements of the Paperwork Reduction Act of 1995. The requirements
to be submitted for OMB reapproval are:
(1) Section 1386.23.(a), Protection and Advocacy Annual Program
Performance Report pursuant to Section 107(b) of the Act (42 U.S.C.
6006(b)) (expired OMB control number 0980-0160);
(2) Section 1386.30(c), State Plan for Federal Assistance for
Planning Priority Area Activities for Persons with Developmental
Disabilities pursuant to section 122 of the Act (42 U.S.C.6022)
(expired OMB control number 0980-0162);
(3) Section 13286.32(a) Deviation--Standard Form 269 Federal
Financial Assistance--State Developmental Disabilities Councils
(expired OMB control number 0980-0212); and
(4) Section 1386.32(b), State Developmental Disabilities Councils
Annual Program Performance Report pursuant to Section 107(a) of the Act
(42 U.S.C. 6006(a)) (expired OMB control number 0980-0172).
The Administration on Developmental Disabilities, (ADD) is working
with the State Developmental Councils and the Protection and Advocacy
agencies in the development of these reports. Such reports will include
information on the requirements of the Act and also will result in
program performance measures as required by the Government Performance
Results Act of 1993 (GPRA). Additionally, such reports are for use as
part of an ADD Management Information System where reporting could be
done electronically. Expected outcomes of the system include:
Verifiable progress in enhancing the quality of life for individuals
with developmental disabilities through improved program planning and
performance; improved data integrity; and the production of a more
efficient data collection and reporting mechanism.
In relation to the collection of information included in the NPRM,
we received seven comments from a national organization and six State
Developmental Disabilities Councils opposing the Program Performance
Report being in a mandated format (Sec. 1386.32(b)). Commenters
indicated that they must have the opportunity to review and comment on
the report before OMB approval. We concur with the comments on the
Council Program Performance Report and have revised the final rule
accordingly.
List of Subjects
45 CFR Part 1385
Disabled, Grant programs/education, Grant programs/social programs,
Reporting and recordkeeping requirements.
45 CFR Part 1386
Administrative practice and procedure, Disabled, Grant programs/
education, Grant programs/social programs, Reporting and recordkeeping
requirements.
45 CFR Part 1387
Disabled, Grant programs/education, Grant programs/social programs.
45 CFR Part 1388
Colleges and universities, Grant programs/education, Grant
programs/social programs, Satellite center, University affiliated
program.
(Catalog of Federal Domestic Assistance Program, Nos. 93.630
Developmental Disabilities Basic Support and 93.631 Developmental
Disabilities--Projects of National Significance, and 93.632
Developmental Disabilities--University Affiliated Program)
Approved: September 4, 1996.
Mary Jo Bane,
Assistant Secretary for Children and Families.
For the reasons set forth in the preamble, 45 CFR chapter XIII,
subchapter I is amended as follows:
Subchapter I--The Administration on Developmental Disabilities,
Developmental Disabilities Program
PART 1385--REQUIREMENTS APPLICABLE TO THE DEVELOPMENTAL
DISABILITIES PROGRAM
1. The authority citation for part 1385 continues to read as
follows:
Authority: 42 U.S.C. 6000 et seq.
2. Section 1385.1 is amended by revising paragraphs (a) and (b) and
republishing the introductory text to read as follows:
Sec. 1385.1 General.
Except as specified in Sec. 1385.4, the requirements in this part
are applicable to the following programs and projects:
(a) Federal Assistance to State Developmental Disabilities
Councils;
(b) Protection and Advocacy of the Rights of Individuals with
Developmental Disabilities;
* * * * *
3. Section 1385.3 is amended by revising the definitions of ADD and
Commissioner and adding alphabetically a definition for ACF,
Developmental Disability, and Protection and Advocacy Agency to read as
follows:
Sec. 1385.3 Definitions.
* * * * *
[[Page 51154]]
ACF means the Administration for Children and Families within the
Department of Health and Human Services.
* * * * *
ADD means the Administration on Developmental Disabilities, within
the Administration for Children and Families.
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.
* * * * *
Developmental disability shall have the same meaning in 45 CFR
parts 1385, 1386, 1387, and 1388 as it does in the Developmental
Disabilities Act, section 102(8), which reads ``the term `developmental
disability' means a severe, chronic disability of an individual 5 years
of age or older 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;
(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, supports, or other
assistance that is of lifelong or extended duration and is individually
planned and coordinated, except that such term, when applied to infants
and young children means individual from birth to age 5, inclusive, who
have substantial developmental delay or specific congenital or acquired
conditions with a high probability of resulting in developmental
disabilities if services are not provided.'' Such determination shall
be made on a case-by-case basis and any State eligibility definition of
developmental disability or policy statement which is more restrictive
than that of the Act does not apply as the Act takes precedence.
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
under part C of the Developmental Disabilities Assistance and Bill of
Rights Act, as amended (A P&A System under part C is authorized to
investigate incidents of abuse and neglect regarding persons with
developmental disabilities; pursue administrative, legal and
appropriate remedies or approaches to ensure protection of, and
advocacy for, the rights of such individuals; and provide information
on and referral to programs and services addressing the needs of such
individuals (section 142(a)(2)(A).); and advocacy programs under the
Protection and Advocacy for Mentally Ill Individuals Act of 1986 (PAIMI
Act), as amended, (42 U.S.C. 10801 et seq.) the Protection and Advocacy
of Individual Rights Program (PAIR), (29 U.S.C. 794(e); and the
Technology-Related Assistance for Individuals With Disabilities Act of
1988, as amended (29 U.S.C. 2212(e)). The Protection and Advocacy
agency also may be designated by the Governor of a State to conduct the
Client Assistance Program (CAP) authorized by section 112 of the
Rehabilitation Act of 1973, as amended, (29 U.S.C. 732). Finally, the
Protection and Advocacy agency may provide advocacy services under
other Federal programs.
* * * * *
4. Section 1385.4 is revised to read as follows:
Sec. 1385.4 Rights of individuals with developmental disabilities.
(a) Section 110 of the Act, Rights of Individuals with
Developmental Disabilities (42 U.S.C. 6009) is applicable to the
programs authorized under the Act, except for the Protection and
Advocacy System.
(b) In order to comply with section 122(c)(5)(G) of the Act (42
U.S.C. 6022(c)(5)(G)), regarding the rights of individuals with
developmental disabilities, the State must meet the requirements of 45
CFR 1386.30(f)(2).
(c) Applications from university affiliated programs or for
projects of national significance grants must also contain an assurance
that the human rights of individuals assisted by these programs will be
protected consistent with section 110 (see section 153(c)(3) and
section 162(c)(3) of the Act).
Sec. 1385.5 [Removed and reserved]
5. Section 1385.5, Recovery of Federal funds used for construction
of facilities is removed and reserved.
6. Section 1385.6 is revised to read as follows:
Sec. 1385.6 Employment of individuals with disabilities.
Each grantee which receives Federal funding under the Act must meet
the requirements of section 109 of the Act (42 U.S.C. 6008) regarding
affirmative action. The grantee must take affirmative action to employ
and advance in employment and otherwise treat qualified individuals
with disabilities without discrimination based upon their physical or
mental disability in all employment practices such as the following:
Advertising, recruitment, employment, rates of pay or other forms of
compensation, selection for training, including apprenticeship,
upgrading, demotion or transfer, and layoff or termination. This
obligation is in addition to the requirements of 45 CFR part 84,
subpart B, prohibiting discrimination in employment practices on the
basis of disability in programs receiving assistance from the
Department. Recipients of funds under the Act also may be bound by the
provisions of the Americans with Disabilities Act (Pub. L. 101-336, 42
U.S.C. 12101 et seq.) with respect to employment of individuals with
disabilities. Failure to comply with section 109 of the Act may result
in loss of Federal funds under the Act. If a compliance action is
taken, the State will be given reasonable notice and an opportunity for
a hearing as provided in Subpart D of 45 CFR part 1386.
Sec. 1385.7 [Reserved]
7. Section 1385.7 Waivers, is removed and reserved.
8. Section 1385.8 is amended by revising the introductory text to
read as follows:
Sec. 1385.8 Formula for determining allotments.
The Commissioner will allocate funds appropriated under the Act for
the State Developmental Disabilities Councils and the Protection and
Advocacy Systems on the following basis:
* * * * *
9. Section 1385.9 is amended by revising the first sentence of
paragraph (a); revising paragraphs (b), (c), and (d) and adding a new
paragraph (e) to read as follows:
Sec. 1385.9 Grants administration requirements.
(a) The following parts of title 45 CFR apply to grants funded
under parts 1386 and 1388 of this chapter and to grants for Projects of
National Significance under section 162 of the Act (42 U.S.C. 6082).
* * * * *
[[Page 51155]]
(b) The Departmental Appeals Board also has jurisdiction over
appeals by grantees which have received grants under the University
Affiliated program or for Projects of National Significance. The scope
of the Board's jurisdiction concerning these appeals is described in 45
CFR part 16.
(c) The Departmental Appeals Board also has jurisdiction to decide
appeals brought by the States concerning any disallowances taken by the
Commissioner with respect to specific expenditures incurred by the
States or by contractors or subgrantees of States. This jurisdiction
relates to funds provided under the two formula programs--Part B of the
Act--Federal Assistance to State Developmental Disabilities Councils
and Part C of the Act--Protection and Advocacy of the Rights of
Individuals with Developmental Disabilities. Appeals filed by States
shall be decided in accordance with 45 CFR part 16.
(d) In making audits and examinations to any books, documents,
papers, and transcripts of records of State Developmental Disabilities
Councils, the University Affiliated Programs, and the Projects of
National Significance grantees and subgrantees, as provided for in 45
CFR part 74 and part 92, the Department will keep information about
individual clients confidential to the maximum extent permitted by law
and regulations.
(e) (1) The Department or other authorized Federal officials may
access client and case eligibility records or other records of the
Protection and Advocacy system for audit purposes and for purposes of
monitoring system compliance pursuant to section 104(b) of the Act.
However, such information will be limited pursuant to section 142(j) of
the Act. No personal identifying information such as name, address, and
social security number will be obtained. Only eligibility information
will be obtained regarding type and level of disability of individuals
being served by the P&A and the nature of the issue concerning which
the System represented an individual.
(2) Notwithstanding paragraph (e)(1)of this section, if an audit,
monitoring review, evaluation, or other investigation by the Department
produces evidence that the system has violated the Act or the
regulations, the system will bear the burden of proving its compliance.
The system's inability to establish compliance because of the
confidentiality of records will not relieve it of this responsibility.
The system may elect to obtain a release from all individuals
requesting or receiving services at the time of intake or application.
The release shall state only information directly related to client and
case eligibility will be subject to disclosure to officials of the
Department.
PART 1386--FORMULA GRANT PROGRAMS
10. The authority citation for Part 1386 continues to read as
follows:
Authority: 42 U.S.C. 6000 et seq.
Subpart A--Basic Requirements
11. Section 1386.1 is revised to read as follows:
Sec. 1386.1 General.
All rules under this subpart are applicable to both the State
Developmental Disabilities Councils and the Protection and Advocacy
Agencies.
12. Section 1386.2 is amended by revising paragraphs (b)(1), (c) to
read as follows:
Sec. 1386.2 Obligation of funds.
* * * * *
(b) (1) A State incurs an obligation for acquisition of personal
property or for the performance of work on the date it makes a binding,
legally enforceable, written commitment, or when the State
Developmental Disabilities Council enters into an Interagency Agreement
with an agency of State government for acquisition of personal property
or for the performance of work.
* * * * *
(c) (1) The Protection and Advocacy System may elect to treat entry
of an appearance in judicial and administrative proceedings on behalf
of an individual with a developmental disability as a basis for
obligating funds for the litigation costs. The amount of the funds
obligated must not exceed a reasonable estimate of the costs, and the
way the estimate was calculated must be documented.
(2) For the purpose of this paragraph, litigation costs mean
expenses for court costs, depositions, expert witness fees, travel in
connection with a case and similar costs and costs resulting from
litigation in which the agency has represented an individual with
developmental disabilities (e.g. monitoring court orders, consent
decrees), but not for salaries of employees of the Protection and
Advocacy agency. All funds made available for Federal Assistance to
State Developmental Disabilities Councils and to the Protection and
Advocacy System obligated under this paragraph are subject to the
requirement of paragraph (a) of this section. These funds, if
reobligated, may be reobligated only within a two year period beginning
with the first day of the Federal fiscal year in which the funds were
originally awarded.
Sec. 1386.4 [Reserved]
13. Sec. 1386.4, Eligibility for services is removed and reserved.
14. The heading of subpart B is revised to read as follows:
Subpart B-- State System for Protection and Advocacy of the Rights
of Individuals with Developmental Disabilities
15. A new section 1386.19 is added to include definitions to read
as follows:
Sec. 1386.19 Definitions.
As used in Secs. 1386.20, 1386.21, 1386.22 and 1386.25 of this part
the following definitions apply:
Abuse means any act or failure to act which was performed, or which
was failed to be performed, knowingly, recklessly, or intentionally,
and which caused, or may have caused, injury or death to an individual
with developmental disabilities, and includes such acts as: Verbal,
nonverbal, mental and emotional harassment; rape or sexual assault;
striking; the use of excessive force when placing such an individual in
bodily restraints; the use of bodily or chemical restraints which is
not in compliance with Federal and State laws and regulations or any
other practice which is likely to cause immediate physical or
psychological harm or result in long term harm if such practices
continue.
Complaint includes, but is not limited to any report or
communication, whether formal or informal, written or oral, received by
the system including media accounts, newspaper articles, telephone
calls (including anonymous calls), from any source alleging abuse or
neglect of an individual with a developmental disability.
Designating Official means the Governor or other State official,
who is empowered by the Governor or State legislature to designate the
State official or public or private agency to be accountable for the
proper use of funds by and conduct of the State Protection and Advocacy
agency.
Facility includes any setting that provides care, treatment,
services and habilitation, even if only ``as needed'' or under a
contractual arrangement. Facilities include, but are not limited to the
following:
Community living arrangements (e.g., group homes, board and care
homes, individual residences and apartments), day programs, juvenile
detention
[[Page 51156]]
centers, hospitals, nursing homes, homeless shelters, jails and
prisons.
Full Investigation means access to facilities, clients and records
authorized under these regulations, that is necessary for a protection
and advocacy (P&A) system to make a determination about whether alleged
or suspected instances of abuse and neglect are taking place or have
taken place. Full investigations may be conducted independently or in
cooperation with other agencies authorized to conduct similar
investigations.
Legal Guardian, conservator and legal representative all mean an
individual appointed and regularly reviewed by a State court or agency
empowered under State law to appoint and review such officers and
having authority to make all decisions on behalf of individuals with
developmental disabilities. It does not include persons acting only as
a representative payee, person acting only to handle financial
payments, attorneys or other persons acting on behalf of an individual
with developmental disabilities only in individual legal matters, or
officials responsible for the provision of treatment or habilitation
services to an individual with developmental disabilities or their
designees.
Neglect means a negligent act or omission by an individual
responsible for providing treatment or habilitation services which
caused or may have caused injury or death to an individual with
developmental disabilities or which placed an individual with
developmental disabilities at risk of injury or death, and includes
acts or omissions such as failure to: establish or carry out an
appropriate individual program plan or treatment plan (including a
discharge plan); provide adequate nutrition, clothing, or health care
to an individual with developmental disabilities; provide a safe
environment which also includes failure to maintain adequate numbers of
trained staff.
Probable cause means a reasonable ground for belief that an
individual with developmental disabilities has been, or may be, subject
to abuse or neglect. The individual making such determination may base
the decision on reasonable inferences drawn from his or her experience
or training regarding similar incidents, conditions or problems that
are usually associated with abuse or neglect.
16. Section 1386.20 is amended by revising the heading; revising
paragraphs (a), (d), and (e); and adding a new paragraph (f) to read as
follows:
Sec. 1386.20 Designated State Protection and Advocacy agency.
(a) The designating official must designate the State official or
public or private agency to be accountable for proper use of funds and
conduct of the Protection and Advocacy agency.
* * * * *
(d) (1) Prior to any redesignation of the agency which administers
and operates the State Protection and Advocacy (P&A) System, the
designating official must give written notice of the intention to make
the redesignation to the agency currently administering and operating
the State Protection and Advocacy System by registered or certified
mail. The notice must indicate that the proposed redesignation is being
made for good cause. The designating official must also publish a
public notice of the proposed action. The agency and the public shall
have a reasonable period of time, but not less than 45 days to respond
to the notice.
(2) The public notice must include:
(i) The Federal requirements for the Protection and Advocacy system
for individuals with developmental disabilities (section 142 of the
Act); and, where applicable, the requirements of other Federal advocacy
programs administered by the State Protection and Advocacy System.
(ii) The goals and function of the State's Protection and Advocacy
System including the current Statement of Objectives and Priorities;
(iii) The name and address of the agency currently designated to
administer and operate the Protection and Advocacy system; and an
indication of whether the agency also operates other Federal advocacy
programs;
(iv) A description of the current Protection and Advocacy agency
and the system it administers and operates including, as applicable,
descriptions of other Federal advocacy programs it operates;
(v) A clear and detailed explanation of the good cause for the
proposed redesignation;
(vi) A statement suggesting that interested persons may wish to
write the current State Protection and Advocacy agency at the address
provided in paragraph (d)(2)(iii) of this section to obtain a copy of
its response to the notice required by paragraph (d)(1)of this section.
Copies shall be provided in accessible formats to individuals with
disabilities upon request;
(vii) The name of the new agency proposed to administer and operate
the Protection and Advocacy System under the Developmental Disabilities
program. This agency will be eligible to administer other Federal
advocacy programs;
(viii) A description of the system which the new agency would
administer and operate, including a description of all other Federal
advocacy programs the agency would operate;
(ix) The timetable for assumption of operations by the new agency
and the estimated costs of any transfer and start-up operations; and
(x) A statement of assurance that the proposed new designated State
P&A System will continue to serve existing clients and cases of the
current P&A system or refer them to other sources of legal advocacy as
appropriate, without disruption.
(3) The public notice as required by paragraph (d)(1) of this
section, must be in a format accessible to individuals with
developmental disabilities or their representatives, e.g., tape,
diskette. The designating official must provide for publication of the
notice of the proposed redesignation using the State register, State-
wide newspapers, public service announcements on radio and television,
or any other legally equivalent process. Copies of the notice must be
made generally available to individuals with developmental disabilities
and mental illness who live in residential facilities through posting
or some other means.
(4) After the expiration of the public comment period required in
paragraph (d)(1) of this section, the designating official must conduct
a public hearing on the redesignation proposal. After consideration of
all public and agency comments, the designating official must give
notice of the final decision to the currently designated agency and the
public through the same means used under paragraph (d)(3) of this
section. This notice must include a clear and detailed explanation of
the good cause finding. If the notice to the currently designated
agency states that the redesignation will take place, it also must
inform the agency of its right to appeal this decision to the Assistant
Secretary, Administration for Children and Families and provide a
summary of the public comments received in regard to the notice of
intent to redesignate and the results of the public hearing and its
responses to those comments. The redesignation shall not be effective
until 10 working days after notifying the current Protection and
Advocacy agency or, if the agency appeals, until the Assistant
Secretary has considered the appeal.
(e) (1) Following notification pursuant to paragraph (d)(4) of this
section, the
[[Page 51157]]
Protection and Advocacy agency which is the subject of such action, may
appeal the redesignation to the Assistant Secretary. To do so, the
Protection and Advocacy agency must submit an appeal in writing to the
Assistant Secretary within 20 days of receiving official notification
under paragraph (d)(4) of this section, with a separate copy sent by
registered or certified mail to the designating official who made the
decision concerning redesignation.
(2) In the event that the agency subject to redesignation does
exercise its right to appeal under paragraph (e)(1) of this section,
the designating official must give public notice of the Assistant
Secretary's final decision regarding the appeal through the same means
utilized under paragraph (d)(3) of this section within 10 working days
of receipt of the Assistant Secretary's final decision under paragraph
(e)(6) of this section.
(3) The designating official within 10 working days from the
receipt of a copy of the appeal must provide written comments to the
Assistant Secretary (with a copy sent by registered or certified mail
to the Protection and Advocacy agency appealing under paragraph (e)(1)
of this section), or withdraw the redesignation. The comments must
include a summary of the public comments received in regard to the
notice of intent to redesignate and the results of the public hearing
and its responses to those comments.
(4) In the event that the designating official withdraws the
redesignation while under appeal pursuant to paragraph (e)(1) of this
section, the designating official must notify the Assistant Secretary,
and the current agency, and must give public notice of his or her
decision through the same means utilized under paragraph (d)(3) of this
section.
(5) As part of their submission under paragraph (e)(1) or (e)(3) of
this section, either party may request, and the Assistant Secretary may
grant, an opportunity for an informal meeting with the Assistant
Secretary at which representatives of both parties will present their
views on the issues in the appeal. The meeting will be held within 20
working days of the submission of written comments by the designating
official under paragraph (e)(2) of this section. The Assistant
Secretary will promptly notify the parties of the date and place of the
meeting.
(6) Within 30 days of the informal meeting under paragraph (e)(5)
of this section, or, if there is no informal meeting under paragraph
(e)(5) of this section, within 30 days of the submission under
paragraph (e)(3) of this section, the Assistant Secretary will issue to
the parties a final written decision on whether the redesignation was
for good cause as defined in paragraph (d)(1) of this section. The
Assistant Secretary will consult with Federal advocacy programs that
will be directly affected by the proposed redesignation in making a
final decision on the appeal.
(f) (1) Within 30 days after the redesignation becomes effective
under paragraph (d)(4) of this section, the designating official must
submit an assurance to the Assistant Secretary that the newly
designated Protection and Advocacy agency meets the requirements of the
statute and the regulations.
(2) In the event that the Protection and Advocacy agency subject to
redesignation does not exercise its rights to appeal within the period
provided under paragraph (e)(1) of this section, the designating
official must provide to the Assistant Secretary documentation that the
agency was redesignated for good cause. Such documentation must clearly
demonstrate that the Protection and Advocacy agency subject to
redesignation was not redesignated for any actions or activities which
were carried out under section 142 of the Act, these regulations or any
other Federal advocacy program's legislation or regulations.
17. Section 1386.21 is revised to read as follows:
Sec. 1386.21 Requirements and authority of the Protection and
Advocacy System.
(a) In order for a State to receive Federal financial participation
for Protection and Advocacy activities under this subpart, as well as
the State Developmental Disabilities Council activities (subpart C of
this part), the Protection and Advocacy System must meet the
requirements of section 142 of the Act (42 U.S.C. 6042) and that system
must be operational.
(b) Allotments must be used to supplement and not to supplant the
level of non-federal funds available in the State for activities under
the Act, which shall include activities on behalf of individuals with
developmental disabilities to remedy abuse, neglect and violations of
rights as well and information and referral activities.
(c) A Protection and Advocacy System shall not implement a policy
or practice restricting the remedies which may be sought on the behalf
of individuals with developmental disabilities or compromising the
authority of the Protection and Advocacy System (P&A) to pursue such
remedies through litigation, legal action or other forms of advocacy.
However, the above requirement does not prevent the P&A from developing
case or client acceptance criteria as part of the annual priorities
identified by the P&A system as described in Sec. 1386.23(c) of this
part. Clients must be informed at the time they apply for services of
such criteria.
(d) A P&A system shall be free from hiring freezes, reductions in
force, prohibitions on staff travel, or other policies, imposed by the
State, to the extent that such policies would impact system program
staff or functions funded with Federal funds and would prevent the
system from carrying out its mandates under the Act.
(e) A Protection and Advocacy System shall have sufficient staff,
qualified by training and experience, to carry out the responsibilities
of the system in accordance with the priorities of the system and
requirements of the Act, including the investigation of allegations of
abuse, neglect and representations of individuals with developmental
disabilities regarding rights violations.
(f) A Protection and Advocacy System may exercise its authority
under State law where the authority exceeds the authority required by
the Developmental Disabilities Assistance and Bill of Rights Act, as
amended. However, State law must not diminish the required authority of
the Protection and Advocacy System.
(g) Each P&A system that is a public system without a multimember
governing or advisory board must establish an advisory council in order
to provide a voice for individuals with developmental disabilities. The
Advisory Council shall advise the P&A on program policies and
priorities and shall be comprised of a majority of individuals with
developmental disabilities who are eligible for services, or have
received or are receiving services or parents or family members,
(including those representing individuals with developmental
disabilities who live in institutions and home and community based
settings), guardians, advocates, or authorized representatives of such
individuals.
(h) Prior to any Federal review of the State program, a 30 day
notice and an opportunity for public comment must be provided.
Reasonable effort shall be made by the appropriate Regional Office to
seek comments through notification to major disability advocacy groups,
the State Bar, other disability law resources, the State Developmental
Disabilities Council and the University Affiliated Program, for
example, through newsletters and publications of those organizations.
The findings of public comments may be consolidated if
[[Page 51158]]
sufficiently similar issues are raised and they shall be included in
the report of the onsite visit.
(i) Before the P&A system releases information to individuals not
otherwise authorized to receive it, the P&A must obtain written consent
from the client requesting assistance, if competent, or his or her
guardian.
18. Section 1386.22 is added to read as follows:
Sec. 1386.22 Access to records, facilities and individuals with
developmental disabilities.
(a) Access to records--A protection and advocacy (P&A) system shall
have access to the records of any of the following individuals with
developmental disabilities:
(1) An individual who is a client of the system, including any
person who has requested assistance from the system, if authorized by
that individual or their legal guardian, conservator or other legal
representative.
(2) An individual, including an individual who has died or whose
whereabouts is unknown, to whom all of the following conditions apply:
(i) The individual, due to his or her mental or physical condition
is unable to authorize the system to have access;
(ii) The individual does not have a legal guardian, conservator or
other legal representative, or the individual's guardian is the State
(or one of its political subdivisions); and
(iii) With respect to whom a complaint has been received by the
system or the system has probable cause (which can be the result of
monitoring or other activities including media reports and newspaper
articles) to believe that such individual has been subject to abuse or
neglect.
(3) An individual who has a legal guardian, conservator, or other
legal representative, with respect to whom a complaint has been
received by the system or with respect to whom the system has
determined that there is probable cause to believe that the health or
safety of the individual is in serious and immediate jeopardy, whenever
all the following conditions exist:
(i) The system has made a good faith effort to contact the
representative upon receipt of the representative's name and address;
(ii) The system has offered assistance to the representative to
resolve the situation; and
(iii) The representative has failed or refused to act on behalf of
the individual.
(b) Individual records to which P&A systems must have access under
section 142(A)(2)(I) (whether written or in another medium, draft or
final, including handwritten notes, electronic files, photographs or
video or audio tape records) shall include, but shall not be limited
to:
(1) Records prepared or received in the course of providing intake,
assessment, evaluation, education, training and other supportive
services, including medical records, financial records, and monitoring
and other reports prepared or received by a member of the staff of a
facility that is providing care or treatment;
(2) Reports prepared by an agency charged with investigating
incidents of abuse or neglect, injury or death occurring at a facility
or while the individual with a developmental disability is under the
care of a member of the staff of a facility, or by or for such
facility, that describe any or all of the following:
(i) Abuse, neglect, injury, death;
(ii) The steps taken to investigate the incidents;
(iii) Reports and records, including personnel records, prepared or
maintained by the facility in connection with such reports of
incidents; or,
(iv) Supporting information that was relied upon in creating a
report, including all information and records which describe persons
who were interviewed, physical and documentary evidence that was
reviewed, and the related investigative findings; and
(3) Discharge planning records.
(c) Information in the possession of a facility which must be
available to P&A systems in investigating instances of abuse and
neglect under section 142(a)(2)(B) (whether written or in another
medium, draft or final, including hand written notes, electronic files,
photographs or video or audio tape records) shall include, but not be
limited to:
(1) Information in reports prepared by individuals and entities
performing certification or licensure reviews, or by professional
accreditation organizations, as well as related assessments prepared
for a facility by its staff, contractors or related entities, except
that nothing in this section is intended to preempt State law
protection records produced by medical care evaluation or peer review
committees.
(2) Information in professional, performance, building or other
safety standards, demographic and statistical information relating to a
facility.
(d) A system shall be permitted to inspect and copy information and
records, subject to a reasonable charge to offset duplicating costs.
(e) The client's record is the property of the Protection and
Advocacy System which must protect it from loss, damage, tampering, or
use by unauthorized individuals. The Protection and Advocacy System
must:
(1) Keep confidential all information contained in a client's
records, which includes, but is not limited to, information contained
in an automated data bank. This regulation does not limit access by
parents or legal guardians of minors unless prohibited by State or
Federal law, court order or the rules of attorney-client privilege;
(2) Have written policies governing access to, storage of,
duplication of, and release of information from the client's record;
and
(3) Be authorized to keep confidential the names and identity of
individuals who report incidents of abuse and neglect and individuls
who furnish information that forms the basis for a determination that
probable cause exists.
(f) Access to Facilities and Individuals with Developmental
Disabilities--A system shall have reasonable unaccompanied access to
public and private facilities which provide services, supports, and
other assistance for individuals with developmental disabilities in the
State when necessary to conduct a full investigation of an incident of
abuse or neglect under section 142(a)(2)(B) of the Act. This authority
shall include the opportunity: to interview any facility service
recipient, employee, or other person, including the person thought to
be the victim of such abuse, who might be reasonably believed by the
system to have knowledge of the incident under investigation; and to
inspect, view and photograph all areas of the facility's premises that
might be reasonably believed by the system to have been connected with
the incident under investigation.
(g) Under section 142(a)(2)(H) of the Act, the system and all of
its authorized agents shall have unaccompanied access to all residents
of a facility at reasonable times, which at a minimum shall include
normal working hours and visiting hours, for the purpose of:
(1) Providing information and training on, and referral to,
programs addressing the needs of individuals with developmental
disabilities, and the protection and advocacy services available from
the system, including the name, address, and telephone number of the
system and other information and training about individual rights; and
(2) Monitoring compliance with respect to the rights and safety of
service recipients.
(h) Unaccompanied access to residents of a facility shall include
the opportunity to meet and communicate
[[Page 51159]]
privately with such individuals regularly, both formally and
informally, by telephone, mail and in person.
(i) If a system is denied access to facilities and its programs,
individuals with developmental disabilities, or records covered by the
Act it shall be provided promptly with a written statement of reasons,
including, in the case of a denial for alleged lack of authorization,
the name and address of the legal guardian, conservator, or other legal
representative of an individual with developmental disabilities.
19. Section 1386.23 is revised to read as follows:
Sec. 1386.23 Periodic reports: Protection and Advocacy System.
(a) By January 1 of each year the Protection and Advocacy System
shall submit an Annual Program Performance Report as required in
section 107(b) of the Act, in a format designated by the Secretary.
(b) Financial status reports must be submitted by the Protection
and Advocacy Agency according to a frequency interval specified by the
Administration for Children and Families. In no case will such reports
be required more frequently than quarterly.
(c) By January 1 of each year, the Protection and Advocacy System
shall submit an Annual Statement of Objectives and Priorities, (SOP)
for the coming fiscal year as required under section 142(a)(2)(C) of
the Act.
(1) The SOP is a description and explanation of the priorities and
selection criteria for the system's individual advocacy caseload;
systemic advocacy work and training activities, and the outcomes which
it strives to accomplish.
(2) Where applicable, the SOP must include a description of how the
Protection and Advocacy System operates and how it coordinates the
Protection and Advocacy program for individuals with developmental
disabilities with other Protection and Advocacy (P&A) programs
administered by the State Protection and Advocacy System. This
description must address the System's intake process, internal and
external referrals of eligible clients, duplication and overlap of
services and eligibility, streamlining of advocacy services,
collaboration and sharing of information on service needs and
development of Statements of Objectives and Priorities for the various
advocacy programs.
(3) Priorities as established through the SOP serve as the basis
for P&As to determine which cases are selected in a given fiscal year.
P&As have the authority to turn down a request for assistance when it
is outside the scope of the SOP but they must inform individuals that
this is the basis for turning them down.
(d) Each fiscal year, the Protection and Advocacy Agency shall:
(1) Obtain formal public input on its Statement of Objectives and
Priorities;
(2) At a minimum, provide for a broad distribution of the proposed
Statement of Objectives and Priorities for the next fiscal year in a
manner accessible to individuals with developmental disabilities and
their representatives, allowing at least 45 days from the date of
distribution for comment;
(3) Provide to the State Developmental Disabilities Council and the
University Affiliated Program a copy of the proposed Statement of
Objectives and Priorities for comments concurrently with the public
notice;
(4) Incorporate or address any comments received through the public
input and any input received from the State Developmental Disabilities
Council and the University Affiliated Program in the final Statement
submitted to the Department; and
(5) Address how the Protection and Advocacy System; State
Developmental Disabilities Council; and the University Affiliated
Program will collaborate with each other and with other public and
private entities.
(The requirements under paragraph (b) are approved under control
number 0348-0039 by the Office of Management and Budget (OMB).
Information collection requirements contained in paragraph (c) are
approved under OMB control number 0970-0132 pursuant to sections
142(a)(2) (C) and (D) and section 107(b) of the Act.)
20. Section 1386.24 is amended by redesignating the introductory
text, paragraphs (a) and (b) as paragraphs (a) introductory text,
(a)(1) and (a)(2); revising newly redesignated paragraphs (a),
introductory text, and (a)(1); and adding a new paragraph (b) to read
as follows:
Sec. 1386.24 Non-allowable costs for the Protection and Advocacy
System.
(a) Federal financial participation is not allowable for:
(1) Costs incurred for activities on behalf of individuals with
developmental disabilities to solve problems not directly related to
their disabilities and which are faced by the general populace. Such
activities include but are not limited to: Preparation of wills,
divorce decrees, and real estate proceedings. Allowable costs in such
cases would include the Protection and Advocacy System providing
disability related technical assistance information and referral to
appropriate programs and services; and
(2) * * *
(b) Attorneys fees are considered program income pursuant to Part
74-Administration of Grants and Part 92-Uniform Administrative
Requirements for Grants and Cooperative Agreements to State and Local
Governments and must be added to the funds committed to the program and
used to further the objectives of the program. This requirement shall
apply to all attorneys fees, including those earned by contractors and
those received after the project period in which they were earned.
21. A new Sec. 1386.25 is added to read as follows:
Sec. 1386.25 Allowable litigation costs.
Allotments may be used to pay the otherwise allowable costs
incurred by a Protection and Advocacy System in bringing lawsuits in
its own right to redress incidents of abuse or neglect, discrimination
and other rights violations impacting on individuals with developmental
disabilities to obtain access to records and when it appears on behalf
of named plaintiffs or a class of plaintiff for such purposes.
22. The heading of subpart C is revised to read as follows:
Subpart C--Federal Assistance to State Developmental Disabilities
Councils
23. Section 1386.30 is amended by revising paragraphs (a) and
(c)(1); redesignating paragraph (e) as (f); revising the newly
redesignated paragraphs (f) republishing newly redesignated paragraph
(f), introductory text; (2) and (3) ; and adding new paragraphs (c)(3)
and (e) to read as follows:
Sec. 1386.30 State Plan requirements.
(a) In order to receive Federal financial assistance under this
subpart, each State Developmental Disabilities Council must prepare and
submit to the Secretary, and have in effect, a State Plan which meets
the requirements of sections 122 and 124 of the Act (42 U.S.C. 6022 and
6024) and these regulations. Development of the State Plan and
applicable annual amendments are responsibilities of the State
Developmental Disabilities Council. The Council will provide
opportunities for public input during the planning and development of
the State Plan and will consult with the Designated State Agency to
determine that the plan is not in conflict with
[[Page 51160]]
applicable State laws and to obtain appropriate State Plan assurances.
* * * * *
(c) * * *
(1) Identify the program unit(s) within the Designated State Agency
responsible for helping the Council to obtain assurances and fiscal and
other support services.
* * * * *
(3) Where applicable, describe activities in which the State's
Developmental Disabilities Council, Protection and Advocacy System
agency, and University Affiliated Program(s) collaborate to remove
barriers or address critical issues within the State and bring about
broad systems changes to benefit individuals with developmental
disabilities and, as appropriate, individuals with other disabilities.
* * * * *
(e) (1) The State Plan may provide for funding projects to
demonstrate new approaches to direct services which enhance the
independence, productivity, and integration and inclusion into the
community of individuals with developmental disabilities. Direct
service demonstrations must be short-term and include a strategy to
locate on-going funding from other sources. For each demonstration
funded, the State Plan must include an estimated period of the
project's duration and a brief description of how the services will be
continued without Federal developmental disabilities program funds.
Council funds may not be used to fund on-going services which should be
paid for by the State or other sources.
(2) The State plan may provide for funding of other projects or
activities, including but not limited to, studies, evaluation,
outreach, advocacy, self-advocacy, training, community supports, public
education, and prevention. Where extended periods of time are needed to
achieve desired results, these projects and activities need not be
time-limited.
(f) The State Plan must contain assurances that:
* * * * *
(2) The human rights of individuals with developmental disabilities
will be protected consistent with section 110 of the Act (42 U.S.C.
6009).
(3) Buildings used in connection with activities assisted under the
Plan must meet all applicable provisions of Federal and State laws
pertaining to accessibility, fire, health and safety standards.
(4) The State Developmental Disabilities Council shall follow the
requirements of section 124(c) (8), (9) and (10) of the Act regarding
budgeting, staff hiring and supervision and staff assignment. Budget
expenditures must be consistent with applicable State laws and policies
regarding grants and contracts and proper accounting and bookkeeping
practices and procedures. In relation to staff hiring, the clause
``consistent with State law'' in section 124(c)(9) means that the
hiring of State Developmental Disabilities Council staff must be done
in accordance with State personnel policies and procedures except that
a State shall not apply hiring freezes, reductions in force,
prohibitions on staff travel, or other policies, to the extent that
such policies would impact staff or functions funded with Federal funds
and would prevent the Council from carrying out its functions under the
Act.
24. Section 1386.31 is amended by revising the section heading,
redesignating the current paragraphs (a), (b), (c), and (d) as (b),
(c), (d), and (e), and adding a new paragraph (a) to read as follows:
Sec. 1386.31 State Plan submittal and approval.
(a) The Council shall issue a public notice about the availability
of the proposed State Plan or State Plan amendment(s) for comment. The
Notice shall be published in formats accessible to individuals with
developmental disabilities and the general public (e.g., tape,
diskette, public forums, newspapers) and shall provide a 45 day period
for public review and comment. The Council shall take into account
comments submitted within that period and respond in the State Plan to
significant comments and suggestions. A summary of the Council's
response to State Plan comments shall be submitted with the State Plan
and made available for public review. This document shall be made
available in accessible formats upon request.
* * * * *
25. Section 1386.32 is revised to read as follows:
Sec. 1386.32 Periodic reports: Federal assistance to State
Developmental Disabilities Councils.
(a) The Governor or appropriate State financial officer must submit
financial status reports on the programs funded under this subpart
according to a frequency interval which will be specified by the
Administration for Children and Families. In no case will such reports
be required more frequently than quarterly.
(b) Pursuant to section 107(a) of the Act (U.S.C. 6006a), the State
Developmental Disabilities Council shall submit an Annual Program
Performance Report in a form that facilitates Council reporting of
results of activities required under sections 122 and 124 of the Act.
The report shall be submitted to the appropriate Regional ACF office,
by January 1 of each year.
26. Section 1386.33 is amended by revising paragraph (a) as
follows:
Sec. 1386.33 Protection of employee's interests.
(a) Based on section 122(c)(5)(K) of the Act (42 U.S.C.
6022(c)(5)(K), the State plan must assure fair and equitable
arrangements to protect the interest of all institutional employees
affected by actions under the plan to provide community living
activities. Specific arrangements for the protection of affected
employees must be developed through negotiations between the
appropriate State authorities and employees or their representatives.
Fair and equitable arrangements must include procedures that provide
for the impartial resolution of disputes between the State and an
employee concerning the interpretation, application, and enforcement of
protection arrangements. The State must inform employees of the State's
decision to provide for community living activities.
* * * * *
27. Section 1386.34 is added to read as follows:
Sec. 1386.34 Designated State Agency.
(a) The Designated State Agency shall provide the required
assurances and other support services as requested by and negotiated
with the Council. These include:
(1) Provision of financial reporting and other services as provided
under section 124(d)(3)(C) of the Act; and
(2) Information and direction, as appropriate, on procedures on the
hiring, supervision and assignment of staff in accordance with State
law.
(b) If the State Developmental Disabilities Council requests a
review by the Governor (or legislature) of the Designated State Agency,
the Council must provide documentation of the reason for change and
recommend a preferred Designated State Agency.
(c) After the review is completed, a majority of the non-State
agency members of the Council may appeal to the Assistant Secretary for
a review of the designation of the designated State agency if the
Council's independence as an advocate is not assured because of the
actions or inactions of the designated State agency.
(d) The following steps apply to the appeal of the Governor's (or
[[Page 51161]]
legislature's) designation of the Designated State Agency.
(1) Prior to an appeal to the Assistant Secretary, Administration
for Children and Families, the State Developmental Disabilities
Council, must give a 30 day written notice, by certified mail, to the
Governor (or legislature) of the majority of non-State members'
intention to appeal the designation of the Designated State Agency.
(2) The appeal must clearly identify the grounds for the claim that
the Council's independence as an advocate is not assured because of the
actions or inactions of the designated State agency.
(3) Upon receipt of the appeal from the State Developmental
Disabilities Council, the Assistant Secretary will notify the State
Developmental Disabilities Council and the Governor (or legislature),
by certified mail, that the appeal has been received and will be acted
upon within 60 days. The Governor (or legislature) shall within 10
working days from the receipt of the Assistant Secretary's notification
provide written comments to the Assistant Secretary (with a copy sent
by registered or certified mail to the Council) on the claims in the
Council's appeal. Either party may request, and the Assistant Secretary
may grant, an opportunity for an informal meeting with the Assistant
Secretary at which representatives of both parties will present their
views on the issues in the appeal. The meeting will be held within 20
working days of the submission of written comments by the Governor (or
legislature). The Assistant Secretary will promptly notify the parties
of the date and place of the meeting.
(4) The Assistant Secretary will review the issue(s) and provide a
final written decision within 60 days following receipt of the State
Developmental Disabilities Council's appeal. If the determination is
made that the Designated State Agency should be redesignated, the
Governor (or legislature) must provide written assurance of compliance
within 45 days from receipt of the decision.
(5) During any time of this appeals process the State Developmental
Disabilities Council may withdraw such request if resolution has been
reached with the Governor (or legislature) on the designation of the
Designated State Agency. The Governor (or legislature) must notify the
Assistant Secretary in writing of such an occurrence.
(e) The designated State agency may authorize the Council use or
contract with State agencies other than the designated State agency to
perform functions of the designated State agency.
28. Section 1386.35 is amended by revising the heading and
paragraph (b)(1) and adding new paragraphs (d), (e), and (f) to read as
follows:
Sec. 1386.35 Allowable and non-allowable costs for Federal Assistance
to State Developmental Disabilities Councils.
* * * * *
(b) * * *
(1) Costs incurred by institutions or other residential or non-
residential programs which do not comply with the Congressional
findings with respect to the rights of individuals with developmental
disabilities in section 110 of the Act (42 U.S.C. 6009).
* * * * *
(d) For purposes of determining aggregate minimum State share of
expenditures, there are three categories of expenditures:
(1) Expenditures for projects or activities carried out directly by
the Council and Council staff, as described in section 125A(a)(2) of
the Act, require no non-Federal aggregate participation.
(2) Expenditures for projects with activities or products targeted
to urban or rural poverty areas but not carried out directly by the
Council and Council staff, as described in section 125A(a)(2) of the
Act, shall have non-Federal participation of at least 10% in the
aggregate.
(3) All other activities not directly carried out by the Council
and Council staff, shall have non-Federal participation of at least 25%
in the aggregate.
(e) The Council may vary the non-Federal participation required on
a project by project, activity by activity basis (both poverty and non-
poverty activities), including requiring no non-Federal participation
from particular projects or activities as the Council deems appropriate
so long as the requirement for aggregate non-Federal participation is
met.
29. Section 1386.36 is amended by revising the section heading and
paragraph (e) to read as follows:
Sec. 1386.36 Final disapproval of the State plan or plan amendments.
* * * * *
(e) A State has filed its request for a hearing with the Assistant
Secretary within 21 days of the receipt of the decision. The request
for a hearing must be sent by certified mail to the Assistant
Secretary. The date of mailing the request is considered the date of
filing if it is supported by independent evidence of mailing, otherwise
the date of receipt shall be considered the date of filing.
Subpart D--Practice and Procedure for Hearings Pertaining to
States' Conformity and Compliance With Developmental Disabilities
State Plans, Reports and Federal Requirements
30. Section 1386.80 is revised to read as follows:
Sec. 1386.80 Definitions.
For purposes of this subpart:
Assistant Secretary means the Assistant Secretary for Children and
Families (ACF).
ADD means Administration on Developmental Disabilities,
Administration for Children and Families.
Presiding officer means anyone designated by the Assistant
Secretary to conduct any hearing held under this subpart. The term
includes the Assistant Secretary if the Assistant Secretary presides
over the hearing.
Payment or Allotment means an amount provided under Part B or C of
the Developmental Disabilities Assistance and Bill of Rights Act. This
term includes Federal funds provided under the Act irrespective of
whether the State must match the Federal portion of the expenditure.
This term shall include funds previously covered by the terms ``Federal
financial participation,'' ``the State's total allotment,'' ``further
payments,'' ``payments,'' ``allotment'' and ``Federal funds.''
31. Section 1386.85 is amended by revising paragraph (a) to read as
follows:
Sec. 1386.85 Filing and service of papers.
(a) All papers in the proceedings must be filed with the designated
individual in an original and two copies. Only the originals of
exhibits and transcripts of testimony need be filed.
* * * * *
32. Section 1386.90 is revised to read as follows:
Sec. 1386.90 Notice of hearing or opportunity for hearing.
Proceedings are commenced by mailing a notice of hearing or
opportunity for hearing from the Assistant Secretary to the State
Developmental Disabilities Council and the Designated State Agency, or
to the State Protection and Advocacy System or designating official.
The notice must state the time and place for the hearing, and the
issues which will be considered. The notice must be published in the
Federal Register.
33. Section 1386.92 is revised to read as follows:
[[Page 51162]]
Sec. 1386.92 Place.
The hearing must be held on a date and at a time and place
determined by the Assistant Secretary with due regard for convenience,
and necessity of the parties or their representatives. The site of the
hearing shall be accessible to individuals with disabilities.
34. Section 1386.93 is amended by revising paragraphs (c)(2) and
(d) to read as follows:
Sec. 1386.93 Issues at hearing.
* * * * *
(c) * * *
(2) Prior to the removal of an issue, in whole or in part, from a
hearing involving issues relating to the conformity with Federal
requirements under Part B of the Act, of the State plan or the
activities of the State's Protection and Advocacy System, the Assistant
Secretary must provide all parties other than the Department and the
State (see Sec. 1386.94(b)) with the statement of his or her intention
to remove an issue from the hearings and the reasons for that decision.
A copy of the proposed State plan provision or document explaining
changes in the activities of the State's protection and advocacy system
on which the State and the Assistant Secretary have settled must be
sent to the parties. The parties must have an opportunity to submit in
writing within 15 days their views as to, or any information bearing
upon, the merits of the proposed provision and the merits of the
reasons for removing the issue from the hearing.
(d) In hearings involving questions of noncompliance of a State's
operation of its program under Part B of the Act with the State plan or
with Federal requirements or compliance of the State's Protection and
Advocacy System with Federal requirements, the same procedure set forth
in paragraph (c)(2) of this section must be followed with respect to
any report or evidence resulting in a conclusion by the Assistant
Secretary that a State has achieved compliance.
* * * * *
35. Section 1386.94 is amended by revising paragraphs (a), (b)(2),
and (c) to read as follows:
Sec. 1386.94 Request to participate in hearing.
(a) The Department, the State, the State Developmental Disabilities
Council, the Designated State Agency, and the State Protection and
Advocacy System, as appropriate, are parties to the hearing without
making a specific request to participate.
(b) * * *
(2) Any individual or group wishing to participate as a party must
file a petition with the designated individual within 15 days after
notice of the hearing has been published in the Federal Register, and
must serve a copy on each party of record at that time in accordance
with Sec. 1386.85(b). The petition must concisely state:
(i) Petitioner's interest in the proceeding;
(ii) Who will appear for petitioner;
(iii) The issues the petitioner wishes to address; and
(iv) Whether the petitioner intends to present witnesses.
* * * * *
(c) (1) Any interested person or organization wishing to
participate as amicus curiae must file a petition with the designated
individual before the commencement of the hearing. The petition must
concisely state:
(i) The petitioner's interest in the hearing;
(ii) Who will represent the petitioner, and
(iii) The issues on which the petitioner intends to present
argument.
(2) The presiding officer may grant the petition if he or she finds
that the petitioner has a legitimate interest in the proceedings, that
such participation will not unduly delay the outcome and may contribute
materially to the proper disposition of the issues.
(3) An amicus curiae may present a brief oral statement at the
hearing at the point in the proceedings specified by the presiding
officer. It may submit a written statement of position to the presiding
officer prior to the beginning of a hearing and must serve a copy on
each party. It also may submit a brief or written statement at such
time as the parties submit briefs and must serve a copy on each party.
36. Section 1386.101 is amended by revising paragraphs (a)(11) and
(c) to read as follows:
Sec. 1386.101 Authority of presiding officer.
(a) * * *
(11) If the presiding officer is a person other than the Assistant
Secretary, he or she shall certify the entire record, including
recommended findings and proposed decision, to the Assistant Secretary;
* * * * *
(c) If the presiding officer is a person other than the Assistant
Secretary, his or her authority is to render a recommended decision
with respect to program requirements which are to be considered at the
hearing. In case of any noncompliance, he or she shall recommend
whether payments or allotments should be withheld with respect to the
entire State plan or the activities of the State's Protection and
Advocacy System, or whether the payments or allotments should be
withheld only with respect to those parts of the program affected by
such noncompliance.
37. Section 1386.111 is amended by revising paragraphs (c) and (d)
to read as follows:
Sec. 1386.111 Decisions following hearing.
* * * * *
(c) If the Assistant Secretary concludes:
(1) In the case of a hearing pursuant to sections 122, 127, or 142
of the Act, that a State plan or the activities of the State's
Protection and Advocacy System does not comply with Federal
requirements, he or she shall also specify whether the State's payment
or allotment for the fiscal year will not be authorized for the State
or whether, in the exercise of his or her discretion, the payment or
allotment will be limited to the parts of the State plan or the
activities of the State's Protection and Advocacy System not affected
by the noncompliance.
(2) In the case of a hearing pursuant to section 127 of the Act
that the State is not complying with the requirements of the State
plan, he or she must also specify whether the State's payment or
allotment will not be made available to the State or whether, in the
exercise of his or her discretion, the payment or allotment will be
limited to the parts of the State plan not affected by such
noncompliance. The Assistant Secretary may ask the parties for
recommendations or briefs or may hold conferences of the parties on
these questions.
(d) The decision of the Assistant Secretary under this section is
the final decision of the Secretary and constitutes ``final agency
action'' within the meaning of 5 U.S.C. 704 and the ``Secretary's
action'' within the meaning of Section 129 of the Act (42 U.S.C. 6029).
The Assistant Secretary's decision must be promptly served on all
parties and amici.
38. Section 1386.112 is amended by revising paragraphs (a) and (b)
to read as follows:
Sec. 1386.112 Effective date of decision by the Assistant Secretary.
(a) If, in the case of a hearing pursuant to section 122 of the
Act, the Assistant Secretary concludes that a State plan does not
comply with Federal requirements, and the decision provides that the
payment or allotment will be authorized but limited to parts of the
[[Page 51163]]
State plan not affected by such noncompliance, the decision must
specify the effective date for the authorization of the payment or
allotment.
(b) In the case of a hearing pursuant to sections 127 or 142 of the
Act, if the Assistant Secretary concludes that the State is not
complying with the requirements of the State plan or the activities of
the State's Protection and Advocacy System do not comply with Federal
requirements, the decision that further payments or allotments will not
be made to the State, or will be limited to the parts of the State plan
or activities of the State's Protection and Advocacy System not
affected, must specify the effective date for withholding payments of
allotments.
* * * * *
PART 1387--PROJECTS OF NATIONAL SIGNIFICANCE
39. The authority citation for part 1387 continues to read as
follows:
Authority: 42 U.S.C. 6000 et seq.
40. Section 1387.1 is amended by revising paragraphs (a), (b), and
(d) to read as follows:
Sec. 1387.1 General requirements.
(a) All projects funded under this part must be of national
significance and serve or relate to individuals with developmental
disabilities to comply with section 162 of the Act.
(b) Based on section 162(d), proposed priorities for grants and
contracts will be published in the Federal Register and a 60 day period
for public comments will be allowed.
* * * * *
(d) Projects of National Significance, including technical
assistance and data collection grants, must be exemplary and innovative
models and have potential for dissemination or knowledge utilization at
the local level as well as nationally or otherwise meet the goals of
part E of the Act.
41. Part 1388 is revised to read as follows:
PART 1388--THE UNIVERSITY AFFILIATED PROGRAMS
Sec.
1388.1 Definitions.
1388.2 Program criteria--purpose.
1388.3 Program criteria--mission.
1388.4 Program criteria--governance and administration.
1388.5 Program criteria--preparation of personnel.
1388.6 Program criteria--services and supports.
1388.7 Program criteria--dissemination.
1388.8 [Reserved].
1388.9 Peer review.
Authority 42 U.S.C. 6063 et seq.
Sec. 1388.1 Definitions.
For purposes of this part:
Accessible means UAPs are characterized by their program and
physical accommodation and their demonstrated commitment to the goals
of the Americans with Disabilities Act.
Capacity Building means that UAPs utilize a variety of approaches
to strengthen their university and their local, State, regional and
National communities. These approaches include, but are not limited to
such activities as:
(1) Enriching program depth and breadth, for example, recruiting
individuals with developmental disabilities and their families, local
community leaders, additional faculty and students to participate in
the UAP;
(2) Acquiring additional resources, for example, grants, space, and
volunteer manpower; and
(3) Carrying out systems changes, for example, promoting inclusive
programming for persons with developmental disabilities across all
ages.
Collaboration means that the UAP cooperates with a wide range of
persons, systems, and agencies, whether they utilize services of the
UAP or are involved in UAP planning and programs. These entities
include individuals with developmental disabilities and family members,
as well as the State Developmental Disabilities Councils, the
Protection and Advocacy agencies, other advocacy and disability groups,
university components, generic and specialized human service agencies,
State agencies and citizen and community groups. An example of this
cooperation is the Consumer Advisory Committee, a required element in
each UAP.
Cultural Diversity means that UAPs are characterized by their
commitment to involve individuals with disabilities, family members and
trainees from diverse cultural backgrounds in all levels of their
activities. This commitment to cultural diversity means that each UAP
must assure that individuals from racial and ethnic minority background
are fully included; that efforts are made to recruit individuals from
minority backgrounds into the field of developmental disabilities; that
specific efforts must be made to ensure that individuals from minority
backgrounds have effective and meaningful opportunities for full
participation in the developmental disabilities service system; and
that recruitment efforts at the levels of preservice training,
community training, practice, administration and policymaking must
focus on bringing large numbers of racial ethnic minorities into the
field in order to provide appropriate skills, knowledge, role models,
and sufficient personnel to address the growing needs of an
increasingly diverse population.
Culturally competent means provision of services, supports, or
other assistance in a manner that is responsive to the beliefs,
interpersonal styles, attitudes, language and behaviors of individuals
who are receiving services, and that has the greatest likelihood of
ensuring their maximum participation in the program.
Diverse Network means that although each UAP has the same mandates
under the Act, the expression of these common mandates differs across
programs. Each UAP must implement these mandates within the context of
their host university, their location within the university, the needs
of the local and State community, the cultural composition of their
State, their resources and funding sources, and their institutional
history. These factors converge to create a network of unique and
distinct programs, bound together by common mandates but enriched by
diverse composition.
Interdisciplinary Training means the use of individuals from
different professional specialties for UAP training and service
delivery.
Lifespan Approach means that UAP activities address the needs of
individuals with disabilities who are of all ages.
Mandated Core Functions means the UAP must perform:
(1) Interdisciplinary preservice preparation;
(2) Community service activities (community training and technical
assistance); and
(3) Activities related to dissemination of information and research
findings.
Program Criteria means a statement of the Department's expectation
regarding the direction and desired outcome of the University
Affiliated Program's operation.
Research and evaluation means that the UAP refines its activities
on the basis of evaluation results. As members of the university
community, involvement in program-relevant research and development of
new knowledge are important components of UAPs.
State-of-the-art means that UAP activities are of high quality
(using the latest technology), worthy of replication (consistent with
available resources), and systemically evaluated.
[[Page 51164]]
Sec. 1388.2 Program criteria--purpose.
The program criteria will be used to assess the quality of the
University Affiliated Programs (UAP). The overall purpose of the
program criteria is to assure the promotion of independence,
productivity, integration and inclusion of individuals with
developmental disabilities. Compliance with the program criteria is a
prerequisite for a UAP to receive the minimum funding level of a UAP.
However, compliance with the program criteria does not, by itself,
assure funding. The Program Criteria are one part of the Quality
Enhancement System (QES), and provide a structure for self-assessment
and peer review of each UAP. (The QES is a holistic approach to enable
persons with developmental disabilities and their families to achieve
maximum potential. All UAPs use the QES.)
Sec. 1388.3 Program criteria--mission.
(a) Introduction to mission: The UAP is guided by values of
independence, productivity, integration and inclusion of individuals
with developmental disabilities and their families. The purpose and
scope of the activities must be consistent with the Act as amended and
include the provision of training, service, research and evaluation,
technical assistance and dissemination of information in a culturally
competent manner, including the meaningful participation of individuals
from diverse racial and ethnic backgrounds. (The concept of ``diverse
network'' as defined in Sec. 1388.1 of this part applies to paragraphs
(b), (f), (g), and (h) of this section.)
(b) The UAP must develop a written mission statement that reflects
its values and promotes the goals of the university in which it is
located, including training, the development of new knowledge and
service. The UAP's goals, objectives and activities must be consistent
with the mission statement.
(c) The UAP's mission and programs must reflect a life span
approach, incorporate an interdisciplinary approach and include the
active participation of individuals with developmental disabilities and
their families.
(d) The UAP programs must address the needs of individuals with
developmental disabilities, including individuals with developmental
disabilities who are unserved or underserved, in institutions, and on
waiting lists.
(e) The UAP's mission must reflect a commitment to culturally
competent attitudes and practices, which are in response to local
culture and needs.
(f) The UAP's mission must reflect its unique role as a bridge
between university programs, individuals with developmental
disabilities and their families, service agencies and the larger
community.
(g) The UAP's goals, objectives, and activities must be consistent
with the mission statement and use capacity building strategies to
address State's needs.
(h) The UAP's goals, objectives, and activities must reflect
interagency collaborations and strategies to effect systemic change
within the university and in State and local communities and service
systems.
Sec. 1388.4 Program criteria--governance and administration.
(a) Introduction to governance and administration: The UAP must be
associated with, or an integral part of, a university and promote the
independence, productivity, integration, and inclusion of individuals
with developmental disabilities and their families. (The concept of
``diverse network'' as defined in Sec. 1388.1 of this part applies to
paragraphs (b), (c), (d), (i), and (l) of this section.)
(b) The UAP must have a written agreement or charter with the
university that specifies the UAP designation as an official university
component, the relationships between the UAP and other university
components, the university commitment to the UAP, and the UAP
commitment to the university.
(c) Within the university, the UAP must maintain the autonomy and
organizational structure required to carry out the UAP mission and
provide for the mandated activities.
(d) The UAP must report directly to a University administrator who
will represent the interests of the UAP within the University.
(e) The University must demonstrate its support for the UAP through
the commitment of financial and other resources.
(f) UAP senior professional staff must hold faculty appointments in
appropriate academic departments of the host or an affiliated
university, consistent with university policy. UAP senior professional
staff contribute to the university by participation on university
committees, collaboration with other university departments, and other
university community activities.
(g) UAP faculty and staff must represent the broad range of
disciplines and backgrounds necessary to implement the full inclusion
of individuals with developmental disabilities in all aspects of
society, consonant with the spirit of the Americans with Disabilities
Act (ADA).
(h) The UAP must meet the requirements of section 109 of the Act
[42 U.S.C. 6008] regarding affirmative action. The UAP must take
affirmative action to employ and advance in employment and otherwise
treat qualified individuals with disabilities without discrimination
based upon their physical or mental disability in all employment
practices.
(i) The management practices of the UAP, as well as the
organizational structure, must promote the role of the UAP as a bridge
between the University and the community. The UAP must actively
participate in community networks and include a range of collaborating
partners.
(j) The UAP's Consumer Advisory Committee must meet regularly. The
membership of the Consumer Advisory Committee must reflect the racial
and ethnic diversity of the State or community in which the UAP is
located. The deliberations of the Consumer Advisory Committee must be
reflected in UAP policies and programs.
(k) The UAP must maintain collaborative relationships with the
State Developmental Disabilities Council and the Protection and
Advocacy agency. In addition, the UAP must be a member of the State
Developmental Disabilities Council and participate in Council meetings
and activities, as prescribed by the Act.
(l) The UAP must maintain collaborative relationships and be an
active participant with the UAP network and individuals, organizations,
State agencies and Universities.
(m) The UAP must demonstrate the ability to leverage resources.
(n) The UAP must have adequate space to carry out the mandated
activities.
(o) The UAP physical facility and all program initiatives conducted
by the UAP must be accessible to individuals with disabilities as
provided for by section 504 of the Rehabilitation Act and Titles II and
III of the Americans with Disabilities Act.
(p) The UAP must integrate the mandated core functions into its
activities and programs and must have a written plan for each core
function area.
(q) The UAP must have in place a long range planning capability to
enable the UAP to respond to emergent and future developments in the
field.
(r) The UAP must utilize state-of-the-art methods, including the
active participation of individuals, families and other consumers of
UAP programs and services to evaluate programs. The
[[Page 51165]]
UAP must refine and strengthen its programs based on evaluation
findings.
(s) The UAP Director must demonstrate commitment to the field of
developmental disabilities and leadership and vision in carrying out
the mission of the UAP.
Sec. 1388.5 Program criteria--preparation of personnel.
(a) Introduction to preparation of personnel: UAP interdisciplinary
training programs reflect state-of-the-art practices and prepare
personnel concerned with developmental disabilities to promote the
independence, productivity, integration and inclusion of individuals
with developmental disabilities and their families.
(b) UAP interdisciplinary training programs must be based on
identified personnel preparation needs and have identified outcomes
that are consistent with the mission and goals of the UAP.
(c) The interdisciplinary training process, as defined by the UAP,
must reflect a mix of students from diverse academic disciplines/
academic programs and cultures that reflect the diversity of the
community. Faculty represent a variety of backgrounds and specialties,
including individuals with disabilities and family members, and a
variety of learning experiences, as well as reflecting the cultural
diversity of the community. Trainees must receive academic credit as
appropriate for participation in UAP training programs.
(d) Preservice training must be integrated into all aspects of the
UAP, including community training and technical assistance, direct
services (if provided), and dissemination.
(e) Trainees must be prepared to serve in a variety of roles,
including advocacy and systems change. The UAP must encourage graduates
to work in situations where they will promote the independence,
productivity, integration and inclusion of individuals with
developmental disabilities and their families.
(f) The UAP must influence University curricula to prepare
personnel who, in their future career in a broad range of social and
community roles, will contribute to the accommodation and inclusion of
individuals with developmental disabilities, as mandated in the
Americans with Disabilities Act.
(g) The UAP core curriculum must incorporate cultural diversity and
demonstrate cultural competence. Trainees must be prepared to address
the needs of individuals with developmental disabilities and their
families in a culturally competent manner.
(h) The UAP core curriculum must prepare trainees to be active
participants in research and dissemination efforts. In addition, the
curriculum must prepare trainees to be consumers of research as it
informs practice and policy.
Sec. 1388.6 Program criteria--services and supports.
(a) Introduction to services and supports: The UAP engages in a
variety of system interventions and may also engage in a variety of
individual interventions to promote independence, productivity,
integration and inclusion of individuals with developmental
disabilities and their families.
(b) UAP community training and technical assistance activities
must:
(1) Use capacity building strategies to strengthen the capability
of communities, systems and service providers;
(2) Plan collaboratively, including the participation of
individuals with developmental disabilities and their families;
(3) Target to a wide range of audiences, including individuals with
disabilities, family members, service and support personnel, and
community members;
(4) Plan and be structured in a manner that facilitates the
participation of targeted audiences; and
(5) Address the unique needs of individuals with developmental
disabilities and their families from diverse cultural and ethnic groups
who reside within the geographic locale.
(c) Direct Services. These requirements apply only where direct
services are offered.
(1) A UAP must integrate direct services and projects into
community settings. These services may be provided in a service
delivery site or training setting within the community including the
university. Direct service projects may involve interdisciplinary
student trainees, professionals from various disciplines, service
providers, families and/or administrators. Direct services must be
extended, as appropriate, to include adult and elderly individuals with
developmental disabilities. The UAP must maintain cooperative
relationships with other community service providers, including
specialized state and local provider agencies.
(2) Services and projects provided in community-integrated settings
are to:
(i) Be scheduled at times and in places that are consistent with
routine activities within the local community; and
(ii) Interact with and involve community members, agencies, and
organizations.
(3) The bases for the services or project development must be:
(i) A local or universal need that reflects critical problems in
the field of developmental disabilities; or
(ii) An emerging, critical problem that reflects current trends or
anticipated developments in the field of developmental disabilities.
(4) State-of-the-art and innovative practices include:
(i) Services and project concepts and practices that facilitate and
demonstrate independence for the individual, community integration,
productivity, and human rights;
(ii) Practices that are economical, accepted by various
disciplines, and highly beneficial to individuals with developmental
disabilities, and that are integrated within services and projects;
(iii) Innovative cost-effective concepts and practices that are
evaluated according to accepted practices of scientific evaluation;
(iv) Research methods that are used to test hypotheses, validate
procedures, and field test projects; and
(v) Direct service and project practices and models that are
evaluated, packaged for replication and disseminated through the
information dissemination component.
Sec. 1388.7 Program criteria--dissemination.
(a) Introduction to dissemination: The UAP disseminates information
and research findings, including the empirical validation of activities
related to training, best practices, services and supports, and
contributes to the development of new knowledge. Dissemination
activities promote the independence, productivity, integration and
inclusion of individuals with developmental disabilities and their
families.
(b) The UAP must be a resource for information for individuals with
developmental disabilities and their families, community members, State
agencies and other provider and advocacy organizations, produce a
variety of products to promote public awareness and visibility of the
UAP, and facilitate replication of best practices.
(c) Specific target audiences must be identified for dissemination
activities and include individuals with developmental disabilities,
family members, service providers, administrators, policy makers,
university faculty, researchers, and the general public.
(d) UAP dissemination activities must be responsive to community
requests for
[[Page 51166]]
information and must utilize a variety of networks, including State
Developmental Disabilities Councils, Protection and Advocacy agencies,
other University Affiliated Programs, and State service systems to
disseminate information to target audiences.
(e) The process of developing and evaluating materials must utilize
the input of individuals with developmental disabilities and their
families.
(f) The values of the UAP must be reflected in the language and
images used in UAP products.
(g) Dissemination products must reflect the cultural diversity of
the community.
(h) Materials disseminated by the UAP must be available in formats
accessible to individuals with a wide range of disabilities, and
appropriate target audiences.
(i) The UAP must contribute to the development of the knowledge
base through publications and presentations, including those based on
research and evaluation conducted at the UAP.
Sec. 1388.8 [Reserved]
Sec. 1388.9 Peer review.
(a) The purpose of the peer review process is to provide the
Commissioner, ADD, with technical and qualitative evaluation of UAP
applications, including on-site visits or inspections as necessary.
(b) Applications for funding opportunities under part D, Section
152 of the Act, must be evaluated through the peer review process.
(c) Panels must be composed of non-Federal individuals who, by
experience and training, are highly qualified to assess the comparative
quality of applications for assistance.
[FR Doc. 96-24508 Filed 9-27-96; 8:45 am]
BILLING CODE 4184-01-U
