Realizing the Intent of the DD Act

Individual and Collaborative Efforts of The DD Network to Fulfill Critical Needs That Otherwise are not Addressed

As noted, state service systems do not typically have the capacity to explore new approaches or pilot programs and cannot engage in the type of legal advocacy provided by the protection and advocacy arm of the DD Network. The DD Network provides essential resources that have had a profound effect on the lives of individuals with ID/DD through individual and systems advocacy.

For the purposes of this paper, we selected examples from six states (Maine, Oregon, Pennsylvania, Tennessee, Washington, and Wisconsin) to illustrate the broad array of programs and projects that state DD Networks engage in around the country. The examples and topics selected are in no way exhaustive of the types of activities the DD Networks are engaged in, neither in the selected states, nor around the country. The examples provide just a snapshot to illustrate the scope and far-reaching impact of DD Networks' initiatives on state and national trends in the development of supports and services to individuals with intellectual disabilities.

Deinstitutionalization and the Growth of Home and Community-Based Services

The past four decades have seen an enormous social and cultural transformation in how individuals with ID/DD and their families are supported. The University of Minnesota Institute on Community Integration (a UCEDD affiliate that receives funding from ADD) annually tracks national data substantiating this transformation. States, lawmakers, providers, researchers, and citizens all rely on this data to track the progress of their state services systems in reducing reliance on large congregate settings while expanding community services. These are invaluable publications and are recognized as the most reliable and informative data sets in the field of ID/DD in assessing state progress and understanding expenditures.

The two most striking trends documented through these publications are the reductions in institutional populations and the parallel expansion of the community-based services system. The 1981 regulatory change permitting states to use Medicaid funds for home and community-based services (HCBS) under the 1915(c) waiver program provided the financing mechanism to undergird the move from institutional-based to community-based services — as well as the financing to deter institutionalization and provide services to individuals already living in the community.⁷ If we take just three points in time (table on following page), we can see the steady downward trend in the use of large state institutions and the concomitant rise in the home and community-based services.⁸ As a base comparison, in 1982, just as the HCBS waiver program came into existence, 122,750 individuals lived in large (greater than 16 beds) state operated facilities.⁹

This downward trend in institutional census resulted in the closure of 192 large, state operated facilities between 1960 and 2010 — and more closures are in progress.¹³ At present eleven states have no state operated facilities and seven states have less than 100 individuals in state facilities larger than 16 beds. Another eight states have less than 200 individuals in large state-operated facilities. During this same period, large privately operated ICFs/MR also reduced their bed capacity nationally from 42,081 in 1987 to 26,695 in 2009. And, in terms of rebalancing long-term support systems, the DD system has been the most successful in deinstitutionalizing individuals, with 65.8 percent of all individuals with ID/DD living in the community as compared to 33.8 percent of seniors and individuals with physical disabilities.¹⁴ The DD Network, through program support and development, influencing policy, training, litigation, and technical assistance, has been essential to this expansion of HCBS services.

Oregon, a state that as of 2011 became the first state to have no licensed public or private institutional beds for individuals with ID/DD serves as stellar example of how the collaborative efforts of the state DD Network partners have transformed the services system. The Oregon DD Network is composed of the Oregon Council on Developmental Disabilities, Disability Rights Oregon (P&A), the Center for Excellence in Developmental Disabilities at the University of Oregon, and the Oregon Institute on Disability and Development at Oregon State Health and Sciences University. The system transformation efforts began in the mid-1980s when Disability Rights Oregon filed litigation seeking the closure of the state institution and continued to represent plaintiffs in negotiations with the state and the U.S. Department of Justice until final closure of Fairview, the state-operated ICF/MR, in 2000. The Specialized Training Program (STP) at University Center on Excellence in Developmental Disabilities, and the DD Council in conjunction with their state developmental disabilities agency, worked together to develop the resources needed to assure the quality and competency of the supports and services afforded to the individuals moved out of Fairview, as well as those already served in the community. These collaborative efforts have had a sustained and profound impact on the services system which is still evident today.

Impact of the Initiative:

• Demonstrated that any individual with ID/DD can successfully live in the community when provided the appropriate supports through the types of training and technical assistance provided by the Specialized Training Program.
• Rebalanced the Oregon system from costly institution-based services to community and individually focused services in large part through the Oregon Council on Developmental Disabilities' efforts to mobilize political and community support for the closure of the institution and facilitating passage of legislation that established the final "Long Range Plan" for all institutional closures while assuring that people would receive community-based services.
• Eliminated the largest institution in the state and set the stage for the closure of all ICFs/MR in Oregon which was accomplished in 2009, while assuring that former residents received the services they need in the community.
• Established backup system of community-based, state-operated group homes for individuals with complex combinations of behaviors and conditions.
• Secured the money from the sale of the institutional property for a trust to be used for home modifications to allow individuals to live safely and independently in the community and created a strategy for funding housing and established nonprofit housing organizations to own the houses.
• Created a nonprofit entity to provide ongoing technical assistance and training that continues to respond to systemic issues (Oregon Technical Assistance Corporation).
• Created the Oregon Intervention System to provide an individualized approach to addressing behavior issues while keeping both the individual and the staff safe.
• Set the pattern for state, DD Network, and advocate collaboration on systemic change issues.

And, most important of all, Oregon serves as an example to the nation that all individuals can live in community settings — without the need for any institutional services.

Wisconsin is another great example of the critical role played by DD Networks. During the period 2002–2004, Disability Rights Wisconsin (DRW, the state's Protection and Advocacy program) and the Wisconsin Board for Persons with Developmental Disabilities (BPDD, Wisconsin's DD Council) were instrumental in the closing of a state institution, Northern Wisconsin Center for the Developmentally Disabled (NWC). Beginning in 1990, DRW and BPDD called for the closing of NWC, one of three state institutions for people with developmental disabilities built around 1900. Prior to this, no Wisconsin governor or legislature had ever closed a residential setting of this nature. Working with the governor's transition team, DRW presented a combined value-based, legal, and economic proposal to close NWC, an idea the governor had not considered before these meetings. The governor included closing NWC in his first budget proposal submitted to the legislature in February 2002. There was immediate backlash from some state legislators, parents who supported institutional settings, and some unions resulting in a lawsuit that was filed against the governor seeking an injunction to stop the closing. DRW made an unprecedented decision to petition the court to join the governor as a co-defendant in the lawsuit. The judge agreed and DRW attorneys joined the defense team with the outcome that the judge denied the motion for injunction, the closing preceded, and all the residents moved out over the subsequent 2½ years. DRW staff attended all the closing meetings and assisted a number of residents and guardians in the individual planning process.

Impact of the Initiative:

• The first closing of a major state institution in Wisconsin and a major reduction in Wisconsin's institutional population.
• Proving that a state institution can be closed by bipartisan consensus of the governor and legislature, without an ADA/Olmstead lawsuit.
• Significant changes to guardian perceptions about community placements as evidenced by survey responses whereby, after the closing, more than 80 percent of guardians reported they were satisfied with the community placements and some added comments indicating a realization that their wards were much better off in the community.