Keeping the Promises

Keeping the Promises

The United States has made important promises to its citizens with intellectual and developmental disabilities. We find them in the Developmental Disabilities Assistance and Bill of Rights Act, the Americans with Disabilities Act, Supreme Court decisions, the Individuals with Disabilities Education Act, the Rehabilitation Act and the President Bushs New Freedom Initiative. These are expressions of national values and commitments to people with intellectual and developmental disabilities*.

People with intellectual and developmental disabilities, their families and friends take these promises seriously:

• They expect that when a great nation promises access to needed community services, individualized supports, and other forms of assistance that promote self determination, independence, productivity, and integration and inclusion in all facets of community life [in the Developmental Disabilities Assistance and Bill of Rights Act], the nation will keep that promise.

• They expect that when a freedom loving nation recognizes "the right of individuals to live independently, enjoy self-determination, make choices, contribute to society, pursue meaningful career and enjoy full inclusion and integration in the economic, political, social, cultural and educational mainstream of American society" [in the Rehabilitation Act], the nation will honor that right.

• They expect that when the President of the United States issues an Executive Order stating that "The United States is committed to community-based alternatives for individuals with disabilities and recognizes that such services advance the best interests of the United States" [as in Executive Order 13217 of June 18, 2001], all states will fulfill that commitment. America's promises to persons with intellectual and developmental disabilities are not easy ones to keep. The words come easily, but living up to them requires commitment, knowledge and the capacity to change the words into concrete results. Research has played a major role in developing and realizing the nation's goals for people with intellectual and developmental disabilities and their families. Periodically, it is important to review both the national goals and the research agenda. This allows us the opportunity to evaluate how well research is helping to narrow the gap between the promises made to versus the realities faced by Americans with intellectual and developmental disabilities. In other words, are we "keeping the promises?"

"Keeping the Promises" means we'll keep trying to let the world know that people with disabilities not only can participate in the community, but that people with disabilities have a place in the community. Thank you for keeping your promise to keep the torch of civil rights for all people burning."Gail Bottoms, Self-Advocate Leadership Trainer, Griffin, Georgia

* For the purposes of this report, "intellectual disability" and "mental retardation" are terms with the same meaning.

In January, 2003, nearly 250 invited participants came together to review the nation's goals for people with intellectual and developmental disabilities and the role of research in helping to achieve them. Participants were sponsored by more than 40 organizations, including nine federal agencies. [See the back cover for a list of sponsoring and participating organizations.] Invited participants included national leaders in research, advocacy, policy and program management. Family members and self-advocates with intellectual and developmental disabilities were well represented. Sponsoring organizations were all part of a nomination process to select conference participants. Most of the work of the conference was conducted with 12 topical groups. These groups cut across the life span from early years to aging and across social roles from learning and development to work and community life. Participants were assigned to these topical groups based on their expertise.

The topical groups were:

Topic 1: Early Development Topic 2: Education Topic 3: Transition to Adulthood Topic 4: Behavioral and Mental Health Supports Topic 5: Health Support Topic 6: Biomedical Research Topic 7: Integrated Employment Topic 8: Community Life Topic 9: Family Life Topic 10: Self-Determination and Self-Advocacy Topic 11: Technology Topic 12: Aging

The findings and recommendations of this conference are presented in three parts:

• Part One: National Goals & Research Principles

• Part Two: Recommendations & Emerging Issues

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  Part Three: Topical Group Summaries

The report also provides examples of both the importance of information gathering and of sharing the daily lives of people with intellectual and developmental disabilities and their families. These personal stories help highlight the need to maintain a vigorous research agenda sharply focused on achieving the goals that this nation holds for individuals with intellectual and developmental disabilities.

If you want more technical information, go to http://rtc.umn.edu/goals where you will find a comprehensive summary from each topical group and contact information for conference participants. A full summary of national goals, the state of knowledge and the research and policy needed to achieve those goals in each topical area will appear in a book to be published by AAMR in late 2003 or early 2004.

INTEGRATED EMPLOYMENT
National Goals

• Access to adequately supported competitive employment, customized employment, self employment or other integrated work will be available to people with intellectual and developmental disabilities to permit their inclusion and productivity.

• Students will be involved in multiple paid integrated work experiences prior to leaving high school and will leave high school with a job or other work-related vocational plans.

• All federal and state funding programs, including Medicaid, will support integrated employment and full-day support in the community.

• Policy and funding emphasizing personal control of employment support resources will continue to grow and be available to all.

• Regard employers as partners and customers to increase employment and career opportunities.

• Individuals will have full and equal access to specialized and generic resources that provide job training and job placement/support as needed to support employment outcomes.

• Business ownership will be supported as a viable employment option by relevant federal agencies, such as the Small Business Administration.

State of Knowledge

• People with disabilities want to work and they prefer to do so in integrated employment settings.

• Most people with intellectual and developmental disabilities who are working work fewer hours and make less money than they desire.

• Employment training programs that attempt to train people for integrated work through sheltered employment or work activity do not effectively produce integrated work outcomes.

• Despite extensive research showing that people with significant intellectual and developmental disabilities can be supported to work in real jobs, the percentages of those who do remains small and relatively unchanged over the past decade.

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  Persons with disabilities and their families have higher expectations for integrated employment than at any other time.

• Transition planning for youth with disabilities does not begin with the presumption of employability.

Knowledge Needed to Achieve National Goals

• What are the best ways to enhance participation of self-advocates and families in the employment process?

• What strategies are effective in increasing business involvement in hiring, training, employment and retention?

• What are the best sources of funding for small businesses and microenterprises?

• What are the best strategies to encourage states to fund integrated employment?

• What are the nations training needs to prepare integrated employment service personnel?

• How much do families and self advocates agree or disagree on vocational/life aspirations?

What strategies work to ameliorate these differences?

• Compare existing traditional services (enclaves, workshops, Medicaid day services, supported work) versus new individualized, person-controlled work. What are people's levels of satisfaction? Are people doing the work they want? Do people have a career track and know that they could have one? What kinds of supports do people need for their individualized employment situations and options? *

• What supports are available to people with disabilities in systems and programs that effectively help them find and keep jobs (help getting to work, types of support at work, training, technology, financial planning, help with personal organization, mentors, etc.)? *

Emerging Issues

• Economic growth plans that do or do not include persons with intellectual and developmental disabilities

Continued emphasis on self-determination and consumer directed services

Explosion of technology/universal design

Emergence of generic employment services for all job seekers

Shortage of quality employment service personnel

The Arc of the United State: http://www.thearc.org/