Realizing the Intent of the DD Act

Autism

Today, 1 in 110 children is diagnosed with autism. The UCEDDs are leaders in the field of autism research, developing clinical intervention, training and educational and prevention programs throughout the country.¹⁷ Many DD Network partners across the country are actively engaged in programs and projects relating to autism, with 20 DD Councils and 61 UCEDDs identifying current projects and programs on this topic. As one example, the Center on Human Development and Disability, at the University of Washington, has conducted a comprehensive initiative involving research, training, outreach, and advocacy on behalf of individuals with autism in Washington state. A major emphasis was placed on early identification and early intervention as well as the addition of new community services.

Impact of the Initiative:

• Created extensive new resources and clinics across the state, especially Tacoma, through funding by the state legislature.
• Worked to establish Senate Bill 5311 to create a state-wide autism task force.
• Carried out research demonstrating the effectiveness of a combined treatment approach for toddlers with autism.
• Within the last 5 years, this initiative has successfully provided training and technical assistance to more than 2,500 professionals from more than 100 school districts and early childhood programs.
• Medical services have improved by establishing medical home teams in 18 of the 39 Washington state counties and a new autism-specific genetics clinic at our UCEDD.

Assistive Technology

Assistive technology (AT) is a rapidly changing and immensely promising area. While technology is an essential element in our society, it remains an allusive resource for most individuals with developmental disabilities. Substituting technology for human assistance can be enormously beneficial in terms of independence — and can positively impact the costs of supporting individuals as well. AT has been a major focus of training, outreach, and research within the Center on Human Development and Disability, (the University of Washington UCEDD) since 1993. Working with partners including colleges and universities, foundations, private industry, state agencies, and legal advocacy organizations, the program serves all Washington state residents with disabilities, their families, employers and employment service providers, educators, health care and social service providers and others seeking information about assistive technology.

Impact of the Initiative:

• Formal presentations to approximately 100,000 individuals across the state.
• Technical assistance and training provided to approximately 20,000 individuals, and received approximately 800,000 hits on the website.
• On-going technical assistance and consultation to numerous private and public entities on accessible information technology as well as assistive technology.
• Legal advocacy activities have resulted in passage of a Washington state law on resale of school district technology to consumers, adoption of Washington state Department of Information Services web-accessibility guidelines, changes to Medicaid coverage for assistive devices, accessibility improvements to the WorkSource Centers, and training of law students and lawyers on the rights of individuals to assistive technology.
• Permanent changes to the curricula at several post-secondary institutions across the state to include courses related to funding, acquisition, and use of assistive technology.

Other Programs and Practices that Assure the Rights and Enhance the Lives of Individuals with ID/DD

The scope and impact of the DD Networks' many initiatives far exceeds the capacity of this brief paper — but below we offer a variety of examples of the other types of investments that have positively affected the lives of individuals with ID/DD. Issues as varied as transportation to reducing reliance on restraints to family financial planning for individuals with ID/DD benefit from the efforts of the DD Network. Many of the issues and barriers that individuals with developmental disabilities face fall outside the scope and capabilities of state services systems; therefore, the efforts of the state DD Networks to bring essential resources to bear on these critical needs is paramount.

Individuals with disabilities report that transportation is a severe barrier to a full life in the community, including obtaining and maintaining integrated employment. The Pennsylvania DD Network partners and others including the independent living centers, Department of Transportation, legislative supporters, engineering consultants, ADAPT, and local transportation authorities joined together to improve rural transportation.

Impact of the Initiative:

• 68 of Pennsylvania's 71 counties, with more than 12,000 registered riders participated in the project.
• Legislation authorizing the system was passed and funded, eventually leveraging more than $7 million per year.
• More than 44 percent of riders utilized the service for the purpose of going to and from work;
• In 2008, Pennsylvania celebrated the provision of the millionth ride made available through this project.
• The system now sustains itself with no further funding from the DD Council.

Financial planning for individuals with ID/DD is often a neglected area — and far outside the responsibilities or capabilities of state services systems. But families who wish to invest in their family member's future often have limited access to the specialized approaches that allow for the establishment of trusts that do not jeopardize critical benefits such as Medicaid or Supplemental Security Income. The Washington State Developmental Disabilities Council advocated for the establishment of the, Developmental Disabilities Life Opportunities Trust (DDLOT) a private-public partnership.

Impact of the Initiative:

• Individual contributions are combined with an original appropriation of $5 million in an endowment that is invested by the Washington state investment board in the same way as the state's other retirement programs.
• Since 1999, the DDLOT has grown to more than 1,518 beneficiaries with accounts in an endowment of more than $27 million.
• During 2010, more than $1 million dollars was disbursed from the trust accounts which beneficiaries used to purchase goods and services in their local communities, all across Washington state.

Sustainable housing is a continual problem for individuals with disabilities. Cost and accessibility of housing are cited as the top barriers to moving individuals into the community from institutional settings. Individuals living in provider-controlled group settings are not truly living in their own home, as evidenced by the need for the person to move if he/she doesn't care for roommates, or if the supports in the home do not meet the person's needs. Beginning in 2003, the Wisconsin Board for Persons with Developmental Disabilities implemented Movin' Out, a program focused on stable rental homes and/or home ownership for individuals with ID/DD.

Impact of the Initiative:

• Successful, sustainable home ownership for 1,100 households in 67 of 72 Wisconsin's counties.
• Subsidies totaling more than $18 million in gap financing to Movin' Out home owners.
• Movin' Out homeowners leveraged more than $60 million in mortgage loans, virtually all with 30-year, fixed rate mortgages, assuring stability over the long haul.
• Movin' Out housing counselors fielded housing inquiries from 2,500 people a year.
• Movin' Out develops and operates small-scale, unlicensed rental housing that provides affordable, safe, and community-integrated housing to tenants who rely on long-term support systems.
• For families desiring to preserve the family home as a housing asset available to family members with disabilities, Movin' Out administers a charitable housing trust and welcomes direct transfers of property to Movin' Out with the promise that Movin' Out will manage the properties so that they are safe and affordable to the family members throughout their lives.