You know what the Department on Disability Services is. And you know that DDS, either through its Development Disabilities Administration (for waiver services) or through the Rehabilitation Services Administration (for employment-related services), contracts with organizations that directly provide those services (“providers”). There are other organizations you should know about though. These are the organizations dedicated to oversight, advocacy and learning with respect to people with developmental disabilities in the District.
A number of these organizations are federally-mandated and operate under program grants from the Department of Health and Human Services (HHS). In every state or comparable jurisdiction, you’ll find three key organizations funded largely by HHS’s Administration on Intellectual and Developmental Disabilities, or AIDD, which recently became part of the Administration on Community Living. These are:
- State Councils on Developmental Disabilities, focused on advocacy, systems change and capacity building to promote inclusion of people with developmental disabilities. In D.C., this organization is the Developmental Disabilities Council (www.ddc.dc.gov, 202-727-6744). I’ve mentioned the DDC in earlier blog posts.
- State Protection and Advocacy (P&A) Systems, to protect the personal and civil rights of persons with developmental disabilities, often through legal advocacy. The P&A agency in D.C. is University Legal Services (www.uls-dc.org, 202-547-0198)
- University Centers for Excellence in Developmental Disabilities Education, Research and Service (UCEDDs), responsible for addressing issues and doing research relating to developmental disability. The D.C. UCEDD is at Georgetown University (www.gucchdgeorgetown.net/ucedd, 202-687-5503).
In addition to these federally-mandated groups, D.C. has a unique organization all its own, the Quality Trust for Individuals with Disabilities (www.dcqualitytrust.org, 202-448-1450). If you haven’t already found Quality Trust, you should. At this point, I should admit that I am on QT’s board, which I joined last year in order to support an organization that had played such an important role in our son’s life. Quality Trust was established in 2001 through one of the consent decrees under the Evans lawsuit, which I talked about in an earlier post (“Where We’ve Come From,” September 25, 2014), as “a durable, independent, nonprofit organization that will monitor and advance the individual and collective interests of people with developmental disabilities in the District of Columbia’s service delivery system.” Through 2011, QT received funding from the D.C. government to help it perform this role, but not anymore. Quality Trust advocates on behalf of individuals seeking or already receiving DDS services, and monitors services provided by DDS/DDA under the Medicaid waiver. It also serves as the organizational home for Project Action!, www.dcqualitytrust.org/advocates/join-project-action, a self-advocacy group for persons with developmental disabilities in D.C. In an important breakthrough, the Quality Trust recently received a competitive HHS grant to develop a national resource center for supported decision-making (www.supporteddecisionmaking.org).
These are organizations that work actively on the advocacy front to make sure DDS is doing its best work and to keep pushing disability services in D.C. toward the future. Some of them will no doubt be at the DDS performance review hearing before the Council’s Health and Human Services Committee (chair Yvette Alexander) on February 20 at 10 a.m., room 412 of the Wilson Building (1350 Pennsylvania Ave NW). The D.C. Coalition of Disability Service Providers (www.dccoalitionproviders.org) will also testify. But the committee needs to know that individuals, and not just organizations, care about these issues. If you can testify, testify. If you can submit written comments, do that. If you can come listen, do that. This is the starting gun for consideration of the budget, and budget translates into services. We can all be advocates.