Creating a Community System of Care and a Commitment to Quality Assurance
Getting a deinstitutionalization plan approved and funded is only half the battle; actual deinstitutionalization has its own unique challenges. The next step is for the stakeholders to demonstrate a commitment to individualized treatment care plans with strong quality assurance measures. A one-size-fits-all plan will not work, will not serve people with ID/DD well, and will not address parental concerns. To ensure the success of its goals, stakeholders must participate in the implementation plan, monitor its progress, and identify concerns, which can then be addressed with the state agency or other implementing individuals or groups.
It is important for the state have a plan for identifying how, when, and where the community resources will be identified to meet the needs of people with ID/DD living in the community. In Georgia, certain services and skills were not available in the state, and the state was recruiting individuals from neighboring states to serve Georgia while the state developed individuals and groups to meet these needs over the long term.
The availability of housing is another critical element of community capacity. Oregon took an important step of separating services from housing. One agency or organization provided services, and another distinct organization owned the physical property. This separation allowed the state to terminate the services of nonperforming providers while preserving the housing.
Oregon also is a leader in the area of housing. The state made a conscious decision early in the process of closing its first institution to use housing professionals to guide its housing policy and programs. It enlisted builders, contractors, and other real estate professionals, along with housing authorities in the state, to identify, create, and manage the housing needed of people coming out of institutions.
Here are two specific approaches to creating community capacity in the housing arena:
One Oregon contractor has created a unique approach to the development of person-centered environments targeted to people with ID/DD. His company, Creative Housing Solutions, has completed more than 1,500 projects for this group.
The ARC of King County in Seattle, Washington, also has a project called Creative Housing Solutions. On its Web site, it shares the stories of 20 people with ID/DD and their families and the creative housing solution that support their needs. Each of these stories identifies the unique and person-centered solution to an individual’s housing and support needs.
Quality Assurance Programs That Engage Parents and Stakeholders
It is important that the plan identify how the state agency will ensure that the standards of care identified in the plan will be monitored and what corrective action the state will take if it determines that people are not getting the care that was identified in the plan, or the care is not being delivered in a way that meets the state’s standards. Some states, such as Georgia, have developed local, regional, or state Quality Assurance Councils to help the state in this important work.
This work includes identifying and addressing gaps in the community service system and ensuring that there is adequate funding for community services, including the availability of very intensive supports for people with significant medical needs or behavioral challenges. Oregon pursued this strategy while at the same time shutting off admissions, and eventually closed all state institutions.
State Developmental Disability commissioners have realized that including people with ID/DD and their families in statewide quality assurance systems is a way to ensure the effectiveness of quality assurance mechanisms and help alleviate parental concerns about quality of care and safety issues.
The State of George has contracted with Delmarva to assist in the staffing of five regional and one statewide Interagency Quality Improvement Committees composed of stakeholders, including self-advocates, family members, regional staff, the Office of Developmental Disabilities staff, provider representatives, and support coordinator representatives. Part of the Quality Improvement Committee’s role is not only to generate quality improvement initiatives but also to assist in the evaluation of the state’s quality management system.
Additional resources are available on the topic area of Strategy in the Deinstitutionalization Toolkit. These are external documents that may be accessed for a more in-depth review of the topic area.
Galbraith, S. (2010). Victory for Individuals in Georgia Institutions. ANCOR Applauds the DOJ Agreement and Welcomes the New Opportunities for Private Providers. Accessed September 6, 2011.http://www.ancor.org/sites/default/files/Georgia%20and
Hopkins, J. S., and S. Roe. (2010). Advocates for Disabled Kids Protest at Care Facility’s Corporate Offices. Chicago Tribune. November 20, 2010. Accessed January 25, 2011. http://articles.chicagotribune.com/2010-11-20/news/ct-met-alden-protest-1121-20101120_1_young-adults-alden-management-services-unpaid-fines
Miller, A. (2010). Georgia Agrees to Move People Out of Mental Hospitals. National Public Radio. October 21, 2010. Accessed January 25, 2011. http://www.npr.org/templates/story/story.php?storyId=130720457
Matthews, A. W. (2011). Feud Over Best Setting for the Disabled. Wall Street Journal. January 24, 2011. Accessed September 6, 2011. http://online.wsj.com/article/
National Center for Independent Living, Website (n.d.). Accessed September 6, 2011. http://www.ncil.org/
National Council on Disability. (2011). Rising Expectations: The Developmental Disabilities Act Revisited. National Council on Disability. Accessed September 3, 2011. http://www.ncd.gov/publications/2011/Feb142011
Parish, S.L. (2005). Deinstitutionalization in Two States: The Impact of Advocacy, Policy, and Other Social Forces on Services for People with Developmental Disabilities. Research & Practice for Persons with Severe Disabilities, 30(4), 1-13.
Pfieffer, M. B. (2010). At $4,556 a Day, N.Y. Disabled Care No. 1 in Nation. Poughkeepsie Journal. Accessed January 25, 2011. http://www.poughkeepsiejournal.com/
Shannon, A. M. (2009). Howe Developmental Center (“Howe”) – Final Report to Governor Patrick Quinn. June 30, 2009. Accessed January 25, 2011. http://www.slideshare.net/janetehunt/final-report-for-howe-developmental-center-closure
Taylor, S. J. (2008). The Direct Support Workforce Crisis: Can Unions Help Resolve This. Center on Human Policy, Syracuse University, policy paper.