Realizing the Intent of the DD Act

Waiting Lists

Waiting lists for services continue to grow as states face budget woes. Although state officials may request funding, they are constrained by the levels of appropriations awarded by state legislatures — and are expressly prohibited from lobbying the legislature for additional resources. The DD Network plays a critical role in garnering new resources for those on waiting lists through public education, community organizing, political and legal action. Waiting list actions have been taken by the DD Networks in the states including litigation and political advocacy through "unlock the waiting list campaigns," educating legislators and working with families to make their voices heard.

Disability Rights Wisconsin and the Waisman Center (UCEDD affiliate) joined efforts to reduce the waiting lists for children's services. In 2007, with the support of the state's major disability coalition (the Survival Coalition of Wisconsin Disability organizations including the state DD Network members), DRW, and Wisconsin Family Voices initiated a campaign to secure a major funding increase in the 2007–2009 biennial budget. Despite a state announced goal of ending waiting lists for adults with disabilities and frail elders, the governor proposed no funding increase in his budget for children and families. Through concerted advocacy, the waiting list message resonated with legislators in both parties, and ultimately the legislature decided to add $9 million ($4 million state and $5 million federal) to the program's budget for the biennium.

Impact of the Initiative:

• Reduced waiting lists for children with disabilities by half.
• Established the Children's Medicaid Waivers as a viable program with sufficient capacity to impact a significant number of children and families in every one of Wisconsin's 72 counties.
• Created momentum for the program in the legislature, which contributed to the governor's decision to propose a second major increase in the 2009–2011 biennium.
• Greatly reduced the risk of children with disabilities having to move into out-of-home placements as a result of having no in-home services available.

Oregon's Staley Settlement Agreement is the product of the joint efforts of the state's DD Network partners: Oregon Council on Developmental Disabilities; Disability Rights Oregon (P&A); and the Oregon Institute on Disability and Development working in concert with each other and multiple other partners including families and self-advocates; The Arc of Oregon; Department of Human Services, Seniors and People with Disabilities, Office of Developmental Disability Services; County Developmental Disability Programs; Oregon DD Coalition (26 organizations); and provider organizations. Staff from Disability Rights Oregon and the Oregon Council on Developmental Disabilities negotiated settlement of the lawsuit resulting in a new system of self-directed services based on a model for the service delivery developed through a Robert Wood Johnson self-directed supports grant operated by the Center for Self Determination at the Oregon Institute on Disability and Development.

Impact of the Initiative:

• The waitlist of adults with no access to services was eliminated.
• More than 7,000 adults with developmental disabilities receive self-directed services under a capped support services waiver living in the family home or living independently in the community.
• More than 300 individuals received access to 24-hour comprehensive services;
• Thirteen support brokerages were created to provide access to a person centered planning process and support to implement the plan.
• Self-advocates and families have embraced the philosophy of self-determination and self -directed services based on person centered thinking.
• Adult support services have delayed or prevented the need for more costly out of home placements.
• Close to 10,000 independent contractors and personal support workers are employed by individuals with ID/DD in the adult support services program, greatly expanding the pool of qualified workers.
• The advisory group has become the model for stakeholder involvement.

The Disability Law & Advocacy Center of Tennessee (DLAC) filed a waiting list suit in 2000, called Brown, et al. v. Tennessee Department of Finance, et al., Case No. 3:00-0665 in U.S. District Court. DD Network partners and other disability organizations helped DLAC identify potential class representatives during the lawsuit. The Tennessee Council on Developmental Disabilities, Boling Center on Developmental Disabilities, Vanderbilt Kennedy Center for Excellence in Developmental Disabilities, and other disability organizations also testified at the fairness hearing regarding the settlement agreement and provided helpful input during DLAC's monitoring of that agreement. In addition, they provided input into the development of two new programs: consumer directed support services and the self-determination waiver. The suit was settled in 2009.

Impact of the Initiative:

• 3,000 people on the waiting list were enrolled into a Medicaid waiver program and remained in their communities rather than in institutional care.
• The number of providers of home and community-based waiver services grew to more than 400.
• People on the waiting list received more than $15 million in consumer directed support funds.

Disability Rights Network of Pennsylvania in partnership with the Pennsylvania Developmental Disabilities Council and the Institute on Disabilities UCEDD at Temple University implemented a Waiting List Campaign that resulted in increased resources and the development of a Prioritization of Urgency of Needs (PUNS) evaluation that establishes the need for services and helps prioritize individuals with the most urgent needs.

Impact of the Initiative:

• The state has the tools to anticipate and plan for level of need on an ongoing basis.
• From 2003 to 2011, $317 million new dollars were appropriated for persons on the waiting list.
• Due to unmet needs identified by PUNS, the 2011 proposed budget includes an additional $228 million to meet the needs of individuals currently underserved through the state's Medicaid waiver program.
• The PUNS methodology is now seen as a successful model for assessing service needs and priorities and with support from the Institute on Disabilities has been adapted for use in five states with an additional three states using an approach modeled on PUNS.