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THE HISTORY OF THE
DEVELOPMENTAL DISABILITIES ASSISTANCE AND THE BILL OF RIGHTS ACT
| The DD Act started in 1963.
It told people with developmental disabilities
that they had rights. The Act started University
Affiliated Programs (UAPs). They were to recruit
and train new professionals.
THE
DEVELOPMENTAL DISABILITIES ASSISTANCE AND THE
BILL OF RIGHTS ACT
WHAT IS IT?
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It is a federal law. |
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It is also called the
DD Act. |
WHAT DOES IT DO?
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It tells people with
developmental disabilities their rights. |
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The Act gives money
to three state programs: |
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Developmental
Disabilities (DD) Councils, On behalf of
the State, develop a coordinated,
consumer- and family-centered, consumer-
and family-directed, comprehensive
system of community services,
individualized supports, and other forms
of assistance through advocacy, capacity
building, and systemic change
activities. |
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Protection and
Advocacy (P&As) Systems are to protect
the legal and human rights of people
with developmental disabilities. They
check on people who live in
institutions. They can file class action
lawsuits. |
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University Affiliated
Programs (UAPs) do research training and
technical assistance. They work with
professionals, policy makers, families,
college students, and adults with
disabilities. They are called the
University Centers for Excellence in
Developmental Disabilities Education,
Research, and Services. |
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Projects of National
Significance. These projects look at the
national needs of people with
developmental disabilities. Projects
include research, training, and services
and supports. |
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The Act started two
new programs. |
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Family Support Act.
This Act gives money to states to help
families care for children with
disabilities at home. |
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Direct Support
Workers Program. This program will
develop a technology-based curriculum
for staff development. The program will
give scholarships to workers to go back
to school. |
FACT SHEET
THE
DEVELOPMENTAL DISABILITIES ASSISTANCE AND THE
BILL OF RIGHTS ACT
TITLE I: Programs for Individuals with
Developmental Disabilities
The DD Act is
divided into three major sections called Titles.
Each Title is divided in subtitles. Subtitles
are divided into sections.
Subtitle A -
General Provisions
Subtitle A tells
you the purpose of the Act. It also tells you
what certain words mean (definitions). It also
tells you what the rights of people with
developmental disabilities are. The rest of
subtitle tells the Federal government how to
implement the Act and who is responsible to
implement it.
Subtitle B:
State Councils on Developmental Disabilities.
State Councils
used to be called DD Councils. On behalf of the
State, the Councils are to develop a
coordinated, consumer- and family-centered,
consumer- and family-directed, comprehensive
system of community services, individualized
supports, and other forms of assistance through
advocacy, capacity building, and systemic change
activities.
Subtitle C:
Protection and Advocacy of Individual Rights.
Protection and
Advocacy (P&As) Systems are to protect the legal
and human rights of people with developmental
disabilities. They check on people who live in
institutions. They can file class action
lawsuits.
Subtitle D:
National Network of University Centers for
Excellence in Developmental Disabilities
Education, Research, and Service
University
Centers for Excellence in Developmental
Disabilities Education, Research, and Services
used to be called University Affiliated Programs
(UAPs). These programs do research, training and
technical assistance. They work with
professionals, policy makers, college students,
families, and adults with disabilities.
Subtitle E:
Projects of National Significance
These projects
were supposed to look at the national needs of
people with developmental disabilities. Projects
include research, training, and services and
supports.
FACT SHEET
What are the
rights of people with developmental disabilities
under the DD Act?
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Right to appropriate
treatment, services, and habilitation
for disabilities. The treatment,
services, and habilitation should
maximize the potential of the person. |
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The treatment,
services, and habilitation should be
provided in the setting that is least
restrictive of the individual's personal
liberty. |
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The Federal
government and the States have to ensure
that public funds are provided only to
institutional, residential, educational
and other community programs that
provide treatment, services, and
habilitation that are appropriate to the
needs of people with developmental
disabilities. |
These programs have to meet
minimum standards:
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Care has to be free
of abuse, neglect, sexual and financial
exploitation, and violations of legal
and human rights. |
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Care cannot put
people with developmental disabilities
into any greater risk of harm than
others in the general population. |
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People receive
appropriate and sufficient medical and
dental services. |
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People cannot be
physically restrained or put in
seclusion, unless the person or other
people are in immediate physical harm. |
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Programs cannot use
restraints and seclusion as a
punishment. |
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Programs cannot use
restraints and seclusion instead of a
habilitation program. |
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Programs cannot use
chemical restraints. |
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Programs cannot use
chemical restraints as a punishment. |
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Programs cannot use
chemical restraints instead of a
habilitation program. |
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These programs make
sure that the most favorable possible
outcome for people. |
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Residential programs
that provide health-related,
habilitative, assistive technology or
rehabilitative services to people have
to make sure that these services are the
same as those provided in intermediate
care facilities for the mentally
retarded (ICF-MR). |
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Other residential
programs have to make sure that care is
appropriate to the needs of the
individuals. These programs can only
admit people that can benefit from their
programs. These programs have to treat
people like human beings, to keep the
home clean, and protect people's rights. |
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The rights under this
Act are in addition to constitutional or
other rights given to all individuals. |
THE
DEVELOPMENTAL DISABILITIES ASSISTANCE AND
THE BILL OF RIGHTS ACT
WHAT ARE THE
PROBLEMS?
PROBLEM 1
The Act does not define
self-advocacy or self-advocacy organization.
WHY IS THIS A PROBLEM?
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Historically,
self-advocacy was and is a civil rights
movement for people with cognitive
disabilities. Self-advocacy
organizations are run by and operated by
boards or executive committees of people
with cognitive disabilities. They are
organizations acknowledged by the
national self-advocacy organization,
Self-Advocates Becoming Empowered. |
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There are other
advocacy groups that are not for and run
by people with cognitive disabilities. |
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Other groups may say
they do self-advocacy, but they are not
self-advocacy organizations. What they
call "self-advocacy" may not be what we
call self-advocacy. |
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Different people have
their own definition of self-advocacy.
Their definition may be different from
our definition of self-advocacy. If
people with cognitive disabilities do
not define self-advocacy and
self-advocacy organization, DD Councils
may fund organizations that are not part
of the self-advocacy movement. |
PROBLEM 2
The Act defines
"individualized supports." It includes early
intervention services, respite care, personal
assistance services, family support services,
supported employment services, support services
for families headed by aging caregivers of
adults with developmental disabilities, and
provision of rehabilitation technology and
assistive technology.
WHY IS THIS A PROBLEM?
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People need supports
to attend self-advocacy and
self-determination activities. |
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People need supports
that will let them to exert control and
choice over their own lives. |
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The Act forgot to
include the provision of resources to
people to attend self-advocacy and
self-determination activities and to
exert control and choice over their own
lives. |
PROBLEM 3
The Act tells the DD Councils
to "establish or strengthen a program for the
direct funding of a State self-advocacy
organization led by individuals with
developmental disabilities.
WHY IS THIS A PROBLEM?
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Self-advocacy groups
are not programs. |
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Self-advocacy groups
do not get direct funding. They have to
get funding through their DD Councils. |
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The DD Councils are
in control of the money. Self-advocates
are not being treated as equal partners. |
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The DD Councils may
give money to programs and not groups. |
PROBLEM 4
The Act says that DD Councils
have to include a goal for each year to
"establish or strengthen a program for the
direct funding of a State self-advocacy
organization led by individuals with
developmental disabilities.
WHY IS THIS A PROBLEM?
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DD Councils may think
they should control how a State
self-advocacy organization should look
and operate. The members of the
self-advocacy organization should be in
control. |
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Many DD Councils
already promised to spend their money
over the next three to five years. Many
may say they do not have money to fund
their self-advocacy organizations.
Self-advocates should not have to wait. |
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Some DD Councils may
say the Act just means that they need to
help self-advocates get direct funding.
It does not mean they have to directly
fund the State organization. |
PROBLEM 5
The Act tells the DD Councils
to "support opportunities for individuals with
developmental disabilities who are considered
leaders to provide leadership training to
individuals with developmental disabilities who
may become leaders.
WHY IS THIS A PROBLEM?
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People with cognitive
disabilities are not opportunities. We
are people. The DD Councils should
support people with cognitive
disabilities. |
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People with cognitive
disabilities should decide what
opportunities they need to help them to
become leaders or become better leaders. |
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It is unclear who
defines leadership training and who
decides who is a leader. Self-advocacy
organizations need to define leadership
training and identify leaders. |
PROBLEM 6
The Act provides money for
Projects of National Significance. One of these
projects could include a project that provides
"technical assistance to self-advocacy
organizations of individuals with developmental
disabilities.
WHY IS THIS A PROBLEM?
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It is unclear who
will do the technical assistance? People
with cognitive disabilities should
provide technical assistance to
self-advocacy organizations. |
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The Act provides
money to four national professional
groups to provide technical assistance
to the DD Councils, the (University
Affiliated Programs (UAPs) and the
Protection and Advocacy Systems (P& As).
People with cognitive disabilities
should have the same opportunity to
provide technical assistance to state
and local self-advocacy organizations. |
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The Act does not say
what type of technical assistance
self-advocacy groups should receive.
Self-advocacy organizations that are run
by and operated by boards or executive
committees of people with cognitive
disabilities should decide what type of
technical assistance is needed. |
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The Act does not say
that the project will promote and build
the capacity of national
self-organizations to link the local,
state, and regional self-advocacy groups
throughout the country. |
WHAT CAN I DO?
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Get a copy of the
Act. Read it. Think about what we said.
Decide what you think. |
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Write a letter to the
Commissioner of the Administration on
Developmental Disabilities. Tell her how
you feel. Tell her how the Act should
show that our government treats people
with developmental disabilities as
equals and that it supports
self-advocates being in control over
their own lives and over their
self-advocacy organizations. |
Commissioner Sue Swenson
Administration on Developmental Disabilities
U. S. Department of Health and Human Services
Mail Stop: HHH 300-F
370 L'Enfant Promenacle SW
Washington, DC 20447
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You write to the
following people. They advocate for
their groups. Tell them what you think.
Ask them to correct the problems. Ask
them to support self-advocacy groups. |
Mr. Curt Decker, Executive
Director
National Association of Protection and Advocacy
Systems, (NAPAS)
900 2nd Street NE, Suite 211
Washington, DC 20002
Ms Donna Meltzer
AAUAP
8630 Fenton Street, Suite 410
Silver Springs, MD 20910
Mr. Ed Burke
Consortium of Developmental Disabilities
Councils (CDDC)
2102 Weatherton Drive
Wilmington, Delaware 19810
Ms Donna Heuneman
National Association of Developmental
Disabilities Councils (NADDC)
1234 Massachusetts Ave. NW, Suite 103
Washington, DC 20005
WHAT ELSE CAN I DO?
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You can write to
Senators Jeffords and Harkin. They
supported the Act. They support people
with cognitive disabilities. They are
interested in hearing about the problems
and how they might be able to help. |
Senator James M. Jeffords
Office Senator Tom Harkin
Committee on Health Education, Labor and
Pensions U.S. Senate
833 Hart Building 731 Hart Building
Washington, DC 20510 Washington, DC 20510
Attention: Ms Sally Rhodes Attention: Katie
Corrigan
Senator Tom Harkin
U.S. Senate
731 Hart Building
Washington, DC 20510
Attention: Katie Corrigan
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