Author: David Wolowitz & Michael O'Connor, Prairie State Legal Services
Last updated: August 2010

(Chapter 10 Section 3 from Guidebook of Laws and Programs for People with Disabilities)

 

The Developmental Disabilities Assistance and Bill of Rights Act (Title I)

What Is It? A federal law that provides federal funding t (1) Developmental Disabilities Councils (the Illinois Council on Developmental Disabilities); (2) Protection and Advocacy Agencies (Equip for Equality); (3) certain University Affiliated Programs (Institute on Disability and Human Development, University of Illinois at Chicago); and (4) Projects of National Significance.

What is its Purpose? To assure that individuals with developmental disabilities participate in the design of and have access to culturally competent services, supports and other assistance and opportunities that promote independence, productivity, integration and inclusion into the community.

Who Can Benefit? Persons with developmental disabilities and their families, advocates, policy makers, state agencies, providers and the general public.

I. Your Legal Rights

Requirements of Federally Funded Programs Serving People with Developmental Disabilities

Findings By Congress

Congress has made a number of important findings about people with developmental disabilities, in the Developmental Disabilities Assistance and Bill of Rights Act (DD Act). Specifically, people with disabilities:

• Number between 3,200,000 and 4,500,000 in the United States, as of 1999;
• Continually encounter various forms of discrimination in critical areas;
• Frequently have severe disabilities that are likely to continue indefinitely;
• Often require lifelong specialized services and assistance;
• Have the right to services which are provided in a coordinated and culturally competent manner;
• Often do not have access to appropriate support and services from service systems and remain unserved or under-served.

It is U.S. policy to provide federal funding to certain programs serving people with developmental disabilities. All programs, projects, and activities receiving assistance from the federal government must be carried out in the following ways:

• Individuals with developmental disabilities (including those with the most severe developmental disabilities) are capable of achieving independence, productivity, and "integration and inclusion" into the community. They often require the provision of services, supports and other assistance to achieve these things.

If you are a person with a developmental disability, the term "integration and inclusion" means:

• You use the same community resources that are available to other citizens;
• You live in homes close to community resources, with regular contact with citizens without disabilities, in your communities;
• You actively participate in the same community activities and types of employment as citizens without disabilities;
• You live, learn, work and enjoy life in regular contact with citizens without disabilities; and
• You have friendships and relationships with individuals and families of your own choosing.

• Individuals with developmental disabilities and their families have competencies, capabilities and personal goals that should be recognized, supported and encouraged. Whenever a program or project provides any assistance to them, it should provide that assistance in an individualized manner, consistent with their unique strengths, resources, priorities, concerns, abilities, and capabilities.
• Individuals with developmental disabilities and their families are the primary decision-makers regarding the services and supports they receive. They play decision-making roles in policies and programs that affect their lives.
• Programs and projects must provide supports and other assistance in a way that shows respect for individual dignity, personal preferences, and cultural differences.
• Programs and projects must make specific efforts to make sure that individuals from racial and ethnic minority backgrounds enjoy effective and meaningful opportunities for full participation in the developmental disabilities service system.
• Programs and projects must recruit larger numbers of racial and ethnic minorities into the field in order to provide appropriate skills, knowledge, role models, and sufficient manpower to address the growing needs of an increasingly diverse population.
• Our communities require education and support in order to be responsive to the needs of individuals with developmental disabilities and their families. At the same time, their full and active participation enrich our communities.
• Individuals with developmental disabilities should have access to opportunities and support to be included in community life, have interdependent relationships, live in homes and communities, and make contributions to their families, community, State, and Nation.

All programs, projects and activities receiving assistance under the DD Act should follow these policies.

What Agencies Are Supported
In order to meet the above objectives and policies, the federal government, through the DD Act, provides support to the following:
 

• Developmental Disabilities Councils. These councils, in the various states, assist in the development of a comprehensive system and a coordinated array of services and supports to individuals with developmental disabilities and their families. The system should be consumer and family-centered. In Illinois, the council is called the Illinois P Council on Developmental Disabilities (ICDD).
• Protection and Advocacy Systems. The federal government funds, in each state, protection and advocacy systems to protect the legal and human rights of individuals with developmental disabilities. In Illinois, the designated protection and advocacy system is Equip for Equality, Inc.
• University affiliated programs (UAP). These programs are to provide inter-disciplinary preparation of students, community service activities, and the dissemination of information and research findings. In Illinois, UAP is the Institute on Disability and Human Development, University of Illinois at Chicago.
• Projects of national significance. These projects are to collect necessary data and provide technical assistance to the above supported agencies and programs.

The Meaning of the Term "Developmental Disability"
The DD Act funds an array of services which benefit persons who have a "developmental disability."

The term "developmental disability" means a severe, chronic disability of an
individual 5 years of age or older that:

• is attributable to a mental or physical impairment or combination of
  mental and physical impairments;
• is manifested before the individual attains age 22;
• is likely to continue indefinitely;
• 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; and
• reflects a need for a combination of special, interdisciplinary services, supports, or other assistance, planned especially for that individual, and that will last for a long time or for the duration of the individual's life.

The term "developmental disability" also can be applied to infants and young children. For them, the term means individuals from birth through age 5, who have substantial developmental delay or specific congenital or acquired conditions. For these children, there is a high probability that developmental disabilities will result if services are not provided.

Congressional Findings of Rights to Assistance

The U.S. Congress has made various findings regarding the rights of people with developmental disabilities. Although the DD Act calls the list of these rights a "Bill of Rights" for people with developmental disabilities, you cannot directly sue a provider under the DD Act for a violation of these rights. However, the Illinois Council on Developmental Disabilities must seek assurances from the programs it funds that those programs will respect these rights. These rights include:

• The right to appropriate treatment, services, and habilitation for your disabilities.
• The treatment, services, and habilitation should be designed to maximize your developmental potential. They should be provided in the setting that is least restrictive of your personal liberty.

If you are in an institutional or residential program, they must provide you with treatment, services, and habilitation which are appropriate to your needs. Funded programs must meet the following standards:

• You are entitled to a nourishing, well-balanced diet;
• You are entitled to appropriate and sufficient medical and dental services;
• Programs are prohibited from physically restraining you, unless it is absolutely necessary. Physical restraints are never allowed as a punishment or as a substitute for a habilitation program.
• Programs are prohibited from excessively using medication to restrain you. They can never use excessive medications as punishment or as a substitute for a habilitation program. They never can use medicine in quantities that interfere with your services, treatment or habilitation.
• Programs must give permission for your close relatives to visit you at reasonable hours without prior notice.
• Programs must comply with adequate fire and safety standards.

All programs serving you should meet standards which are designed to make sure that you experience the most favorable possible outcome.

If you are in a residential program that serves your need for comprehensive, health-related habilitative or rehabilitative services: In this case, the standards must be at least equivalent to those standards applicable to intermediate care facilities for the mentally retarded.

If you are in another kind of residential program: In this case, the standards must assure that care is appropriate to your needs, that you are admitted to facilities that can met your needs, and that the facilities provide for the humane care of the residents, are sanitary, and protect your rights.

If you are in a non-residential program: The standards must assure the care provided by such programs is appropriate to you.

Employment of Persons with Disabilities

Any grantee receiving federal funding under this Act, such as the Illinois Council on Developmental Disabilities or Equip for Equality, must take "affirmative action" to employ qualified individuals with disabilities. In all employment practices, the grantee must take affirmative action to protect the interests of persons with disabilities.
Examples: Hiring, promotion, demotion, transfer, recruitment, rates of pay, training, layoff or termination.

This obligation is in addition to the rules that prohibit employment discrimination. The grantee must avoid discriminating against you on account of your disability. But also, the grantee must take affirmative steps to make sure that qualified persons with disabilities become employed and advance in employment, as opposed to an equally qualified person without a disability.

If a grantee fails to comply with this obligation, it can lose its federal funding.

The Illinois Council on Developmental Disabilities and Other Supported Agencies

The Council on Developmental Disabilities
The purpose of the Illinois Council on Developmental Disabilities (ICDD) is to promote the development of a consumer and family-centered, comprehensive system of services and supports for people with developmental disabilities. This is done through systemic change, capacity building, and advocacy activities. The services must be designed to achieve independence, productivity, and "integration and inclusion" into the community. They also must be "culturally competent."

The term "culturally competent" means providing assistance in a way that is responsive to the beliefs, interpersonal styles, attitudes, language and behaviors of individuals who are receiving services.

The ICDD receives federal funds under the DD Act to assist in the development of this array of services. In order to get the federal funding, the ICDD must have a State Plan approved by the Administration on Developmental Disabilities, a division of the U.S. Department of Health and Human Services. Among other things, the Plan must do the following:

• Identify the priority areas selected by the Council; and
• Describe the activities in which the Council, Equip for Equality, and the university affiliated programs (UAP) will work together to remove barriers and bring about changes in the system that will benefit individuals with developmental disabilities.

In addition, the Plan must contain certain assurances, including:

• The rights of persons with developmental disabilities set out in the above "Bill of Rights" will be protected;
• All buildings used in connection with any activities assisted under the Plan must meet all federal and state laws pertaining to accessibility, as well as fire, health and safety standards.

The members of the ICDD all are appointed by the Governor. At least 50% of the membership of the Council must be individuals with developmental disabilities or their parents or guardians (this percentage will likely increase to 60% due to a recent reauthorization of the DD Act). There must be a certain number of each, and there must be at least one person who lives in or who has lived in an institution or who is the immediate relative or guardian of an individual who lives in or who has lived in an institution.

Other Council activities include the following:

• Training for individuals with developmental disabilities, their families and others. This training is to enable them to obtain access to supports and other assistance.
• Promoting inter-agency collaboration, to enable the agencies to work together to better serve the community.
• Activities to eliminate barriers, enhance system design, and enhance citizen participation.
• Activities to educate the public about the capabilities and needs of individuals with developmental disabilities and their families.

Equip for Equality, Inc.
The federal government, under the Act, provides funding to every state to support a "protection and advocacy" system. The purpose of this system is to protect the legal and human rights of individuals with developmental disabilities. In Illinois, this funding goes to a private, not-for-profit organization known as Equip for Equality, Inc.

Attorneys and other staff working for Equip for Equality protect and advocate for the rights of people with developmental, physical or mental disabilities. They provide services, including advice, training in self-advocacy, and direct legal representation. They handle a broad range of legal matters, focusing on enforcing the rights of people with disabilities to be free of discrimination and to have equal access.

Equip for Equality can set their own case acceptance criteria and priorities (with public input). If they take your case, they can and should pursue all legal and administrative remedies that are available to you.

Equip for Equality does not receive federal funding to solve problems which are not directly related to your disability and which are faced by the general population.
Examples: Equip for Equality cannot receive funding under the Act for preparation of wills, divorce, or real estate proceedings.

Equip for Equality is active in representing people with disabilities, by advocating in Springfield for laws that protect people with disabilities. Equip for Equality also monitors the performance of other agencies that are responsible for assisting people with disabilities.

Equip for Equality is an independent entity, and is not administered by the ICDD.

The University-Affiliated Programs
The federal government also provides grants under this Act to "university-affiliated programs." In Illinois, the university-affiliated program (UAP) is the Institute on Disability and Human Development, University of Illinois at Chicago.

A UAP must be a recognized part of a university. It has its own faculty and staff. It has a unique role as a bridge between university programs, individuals with developmental disabilities and their families, service agencies and the larger community. Its goals must be to cooperate with other agencies in order to change the service delivery system.

The term "university affiliated program" means inter-disciplinary programs run by universities, or by public or non-profit entities associated with a college or university. Their purpose is to provide leadership in promoting the independence, productivity, and integration and inclusion into the community of people with disabilities.

The UAP engages in the following types of activities:

Training. The UAP prepares personnel concerned with developmental disabilities. The UAP trains these personnel to address the needs of people with disabilities in such areas as early intervention, aging, community services, positive behavior supports, assistive technology services, the ADA, and community transition. Trainees receive academic credit. The UAP must encourage its graduates to work in situations where they can use their training.

Community service activities. The UAP engages in a variety of system or individual interventions. It also is involved in community training and technical assistance activities designed to strengthen the capabilities of service providers and communities. The UAP may offer direct services and projects. If offered, the UAP provides these services at a service delivery site in a community setting.

Dissemination of information and research findings. The UAP is a resource for information for individuals with developmental disabilities and their family members. It is also a resource for provider and advocacy organizations, state agencies, and the community at large. As members of the university community, the UAP is involved in program research and the development of new knowledge. This research relates to best practices, services, and supports, and training. The UAP must send out this information to specific target audiences. It also must be responsive to requests for information from the community. The UAP must actively participate in community networks.

The UAP physical facility and all program initiatives conducted by the UAP must be accessible to individuals with disabilities, consistent with Section 504 of the Rehabilitation Act and Titles II and III of the ADA.

Like the ICDD, the UAP must conduct all its activities in a "culturally competent" manner, and reflect a "life span approach."

The term "life span approach" means that UAP activities must address the needs of persons with disabilities of all ages.

Projects of National Significance
The federal government also provides funding under the Act to "projects of national significance." These projects help to develop national and state policy to enhance the independence, productivity, integration and inclusion of people with developmental disabilities.

These projects can be run by government or non-profit agencies. They can do the following:

• Collect data on the accomplishments of all the Developmental Disabilities programs described above.
• Provide research, training, and evaluation that improves the effectiveness of the programs described above.
• Provide research and technical assistance to help States develop information and referral systems for people with disabilities.
• Improve the opportunity for minorities to participate in the Developmental Disabilities programs described above.
• Educate and assist policy-makers to change laws or programs to better improve the lives of people with developmental disabilities.

II. Where To Go For More Information

Statutes and Regulations
The federal Developmental Disabilities Assistance and Bill of Rights Act (Title I) can be found at 42 U.S.C 15001-15083.


The federal regulations for the programs funded under the Act can be found at 45 CFR Part 1385 to Part 1388.

The state law creating the Illinois Council on Developmental Disabilities, and describing its membership, powers and duties, can be found at 20 ILCS 4010.

The state regulations for the Council can be found at 2 Ill.Admin.Code Part 2900.

The public may direct inquiries to the Illinois Council on Developmental Disabilities and may obtain information concerning its committees, programs, and activities from the Council. The council has offices in Springfield and Chicago.
Illinois Counsel on Developmental Disabilities
 830 South Spring
Springfield, Illinois 62704
(217) 782-9696

100 W. Randolph, Suite 10-600
Chicago, Illinois 60601.
(312) 814-2080 
Copies of the Council's Rules, State Plan, and Bylaws may be obtained from the Council upon request.

For further information about Equip for Equality, see the section of this guidebook titled "Legal Advocacy for People with Disabilities" in Chapter 16, Miscellaneous Rights.

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