By Sharon Lewis, Commissioner, Administration on Intellectual and Developmental Disabilities, ACL
Tracy is a young woman who shares a home in Missouri with a roommate, in a house that is bright and attractively furnished. Her days are filled with trips to the park, lunch at neighborhood restaurants, naps, games, and other recreational activities in the community. By contrast, when Tracy lived at the Northwest Habilitation Center for four years, “there was almost a complete lack of interaction with the general population. She never went out. She lost weight. There definitely was a manpower problem,” according to Tracy’s father.
For the first 26 years of her life, Tracy lived at home with her parents. It was only when Tracy’s mom became ill that they were forced to explore other options. First, they sent her to a day program to get her used to being away from home and, then, to the institution. “Our daughter Nancy, who had worked for several years with people with developmental disabilities, wanted us to consider community living,” recalls Tracy’s dad. “We were reluctant because we had heard so many negative stories about it.”
Seven years ago, Tracy moved to the community and according to her father, it is a decision the family has never regretted. “Tracy has improved in so many ways,” says Tracy’s mother. “She communicates more. She does more. She interacts more with people. She goes out and does things she’s interested in doing. She’s definitely happier. She comes to our home about once a month and on holidays. When we bring her back to her house and pull into the driveway, she can’t wait to get out of the car.”
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It is amazing that nearly 50 years after the passage of the first version of the Developmental Disabilities Assistance and Bill of Rights Act (DD Act), we still need to tell stories like Tracy’s, and we all need to continue to work hard to ensure that people with intellectual and developmental disabilities have the right and opportunity to live and participate in the community.
The mission and purpose of the Administration on Intellectual and Developmental Disabilities (AIDD), as defined in the DD Act is clear: to ensure that people with developmental disabilities and their families participate in the design of—and have access to—community services, individualized supports and other forms of assistance that promote self-determination, independence, productivity, integration and inclusion in all facets of community life. As Developmental Disabilities Awareness Month is upon us, it is important to reflect on the work of individuals and organizations to improve the lives of the more than 6 million Americans with developmental disabilities, to take stock of accomplishments and consider opportunities ahead, while being mindful of the significant challenges that remain.
However, as we reflect on the work, at the center must be the people we serve. Recognizing and telling stories of how individuals with intellectual and developmental disabilities and their families participate as members of community life is important. Sharing both triumphs and challenges that people face is crucial so we can build upon and try to replicate victories across the United States while simultaneously helping people and families who are struggling—both types of stories can be used to inform and influence policy.
As Tracy’s story shows us, there is much to celebrate. In 1990, Congress passed the Americans with Disabilities Act (ADA), recognizing the rights of people with disabilities to be treated equally and providing an enforceable way to challenge unfair treatment against them. The Supreme Court, in the 1999 Olmstead decision interpreting the ADA, affirmed the right of people with disabilities to live in their community and that the civil rights of people with disabilities are violated when they are unnecessarily segregated from the rest of society. The ADA has protected the civil rights of all Americans with disabilities for over 20 years now, the Rehabilitation Act celebrates 40 years this year, the Individuals with Disabilities Education Act has protected children and youth for close to four decades, and for nearly 50 years the legacy of the DD Act has acknowledged our country’s responsibility to protect the rights of and ensure equal opportunity for people with intellectual and developmental disabilities.
More recently, there have been critical improvements thanks to the Affordable Care Act (ACA) that will benefit people with disabilities and their families. Starting in 2014, the ACA will prohibit insurance companies from denying coverage based on a pre-existing condition, or charging someone more based on genetic information. Further, insurance companies won’t be permitted to drop people simply for using their coverage.
It has been almost a year since AIDD joined the Administration on Aging and the HHS Office on Disability to form the new Administration for Community Living (ACL), which works to maximize the independence, well-being, and health of older adults, people with disabilities of all ages, and their families and caregivers. ACL seeks to advance policies, services, and supports that enable people to live with dignity, make their own choices, and participate fully in society. As part of ACL, AIDD is now better positioned to meet the unique needs of people with developmental disabilities and ensure that they have the opportunity to realize their full potential.
Also of note, the President has signed and Secretary Sebelius has expressed her support for the U.N. Convention on the Rights of Persons with Disabilities, a treaty that would help advance the human rights of Americans with disabilities—that is, dignity, autonomy, full inclusion, and equality of opportunity—not just at home but around the world.
However, even given these momentous positive changes, big challenges remain, including the pressing need to continue to transform our health care delivery systems, and other obstacles to achieving the vision that all Americans should have the chance to live in a home of their choosing, with people whom they care about, working in a job for a living wage, and integrated into a community that values their participation and their contributions.
Within AIDD, we are committed to challenging discrimination, low expectations, limited opportunities and lack of respect for people with ID/DD. Some of AIDD’s current priorities include advancing competitive, integrated employment policies through strategies that include inclusive education and strengthening opportunities for exercising self-determination. AIDD and its network, partners, and stakeholders continue to work to raise expectations, change negative perceptions, and build more inclusive and supportive communities for people with developmental disabilities.
Stories matter. Fundamentally, the voices of people with intellectual and developmental disabilities are absolutely critical and must be central in all of our efforts. Among our most recent efforts in this area, AIDD awarded mini-grants to eight self-advocacy groups. The goal of these grants is to provide self-advocacy organizations with the opportunity to build their organizations, expand their membership, and demonstrate their success. We continue to work hard to improve integrated, community-based employment opportunities at competitive wages for people with intellectual and developmental disabilities. Employment is not only the means to economic self-sufficiency, it is also an important way for people with disabilities to contribute as fully-participating members of their communities, to build a network of social relationships and to create opportunities for lifelong learning. The confidence and growth that comes with successful employment are huge, and the empowerment that comes with controlling your own resources is an important part of living a self-determined life.
Tyler from Wyoming is an example of what happens when people work in competitive integrated settings. Otherwise known to his friends and family as “Ty” or “Speedy” he began exploring employment options in his teens by spending summers with his uncle. He worked odd jobs as a ranch hand and carpenter’s assistant. After graduating high school in Lander with his classmates, he wanted to find a full-time job and move out on his own like his buddies.
Tyler and his family worked with various state and private programs to help him look for job opportunities. While his family was grateful for the help, his mom and advocate, recalls their initial struggles. “There were frustrations with paid services early on, and agencies were not always very helpful.” She adds, “The services and systems were fragmented and deterred progress. People on case-loads seemed to be just a number, a case.” After a few unsuccessful job placements, Tyler and his parents looked to a family friend to help find meaningful, competitive work. A job coach from a local waiver service provider helped him the first few months. His supervisor says he proved his skills as a patient, hardworking staff member, so they offered to make him a permanent employee. They put him through more training and he became a regular employee, eventually offering him a full-time position.
Tyler and his family were excited for the opportunity to become full-time, but became concerned about him losing his social security income, the Medicaid health insurance and the supported living services through the Adult DD Waiver that helped him live independently in his own apartment. After learning about the Department of Health’s Medicaid Buy-In option, which is called Employed Individuals with Disabilities, or EID, they decided to accept the full-time position, enroll in EID, and pay the premium cost to keep Medicaid and waiver services for some support in the home.
Today, Tyler continues to succeed at his job and in life goals. He recently received his five-year employee service award from Wyoming Department of Health. He loves his job and looks forward to work each day because he says “it makes me feel good to help other people.” Tyler got married last summer and moved from his apartment into a house with a big backyard. He and his wife, a police dispatcher, care for their four dogs. When asked about his future career plans, he says he wants to get a “side business together making leather gun holsters and bring in a little extra income for my family.”
With support and guidance from his mom and wife, Tyler decided to stop receiving assistance through the Adult DD Waiver and EID program and accept the health insurance and benefits that come with his job. Although they helped him in the beginning of his adult life, he is no longer using any federal or state program to help him with routine life activities or work. When he needs help with day-to-day activities such as budgeting he turns to his wife and mom for some assistance. “But mostly” he says cheerfully, “I am doing everything on my own.”
While Tyler’s story is encouraging, the rate of competitive employment in integrated settings for people with intellectual and developmental disabilities is unacceptable, at less than 25%.
Graduation rates, a key indicator for employment success, continue to hover around 30% for students with intellectual disabilities. Higher education opportunities for students with ID/DD remain extremely limited. Supports and services to ensure success in competitive, integrated employment are not always prioritized. Families may struggle with the interdependencies of facilitating and supporting a meaningful day for family members with ID/DD, while simultaneously trying to maintain their own employment. Transportation is also frequently a barrier in many communities.
AIDD and the DD Network continue to take a systems-change approach to addressing this challenge, including some of the following examples:
AIDD will continue to engage with people with developmental disabilities and their families as well as the broader community in efforts to ensure the availability of appropriate supports and services to allow people with developmental disabilities to live, work and participate fully in our society. During this DD Awareness month, we refresh our commitment to achieving full integration and inclusion in society for all people, including all people with intellectual and developmental disabilities, and acknowledge the importance of the self-advocates’ voices.
Keep telling the stories of what is possible, and how much high expectations matter. Your words are critically important.
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Last Modified: 4/2/2014