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Ensuring Quality through Policy in Rapidly Changing Times

In the post below, the Autism Speaks Adult Services team shares their experience this week at this year's Reinventing Quality Conference in Baltimore, Maryland.

The Autism Speaks Adult Services team recently returned from the Reinventing Quality Conference in Baltimore, Maryland. The goal of this biennial conference is to provide information, new ideas and active discussion about the point of view of people with disabilities and their families, and supports that improve opportunities for citizenship and the quality of life for all people with disabilities. And it pledges to showcase best practices in supports and services for people with disabilities. It certainly delivered on its promise.

The theme of this year’s conference was Ensuring Quality in Rapidly Changing Times. The conference kicked off with a panel of individuals with developmental disabilities (some accompanied by their caregivers), setting the framework for our discussions by focusing on individualized needs and goals. The audience was filled with people with disabilities, family members, advocates and state and federal officials. Most of the audience members were state and federal leaders who are responsible for writing, implementing and/or challenging policy on Medicaid and vocational rehabilitation services.

As panelists spoke and participants asked questions, it was clear that the common thread throughout this conference was the goal of achieving quality for each individual. But how do you do that through policy?  

Policy can be seen a means to an end result for individuals with disabilities, and their needs were as diverse as the state entities listening to them. There were many questions about the Centers for Medicare and Medicaid’s (CMS) new regulations that define Home and Community-based Services.  How would the policies be implemented and how would that affect supports for people with autism and all developmental disabilities? While I’m not sure that there was consensus in the room on the documentation that states will need to provide at the federal level (at one point an attendee representing a state said, “Just simply tell us what you want!”), there was consensus that the system needs to evolve and support an individual’s right to choose amongst options that will maximize their outcomes. Although not having specific answers or step by step procedures can be frustrating and confusing, especially for individuals and families, this can provide an opportunity to have an open dialogue with policy leaders.

The message from advocates at the federal level was loud and clear: we can show you the way to provide optimal supports through concrete data, examples and anecdotes, but each state must work to develop a system of supports that recognizes the value of individual needs while understanding that we are all part of the larger fabric of a community that is economically challenged. We cannot afford financially or philosophically to be at odds with the pursuit of a systems change that is person-centered and also takes into consideration the community in which we live. What a great framework!  It was also heartening to hear discussions focus on implementing effective, integrated employment policies and supports, instead of questioning why we need to. We have come a long way!

We would be remiss if we didn’t give a shout out to our colleagues at the Anderson Center for Autism, a person-centered, not for profit organization in Staatsburg, NY that fosters independence and self- advocacy for children and adults with autism, who received the Moving Mountains Award.  The award recognized best practices in direct support professional (DSP) workforce development that results in improved outcomes for people being supported.   They were honored this year for their innovative Career Ladder Learn and Earn Program, designed to help their staff members establish personalized professional development plans. Anderson Center is also a partner of Autism Speaks as part of the Leadership Council of Advancing Futures for Adults with Autism (AFAA), and as members of the National Association of Residential Providers for Adults with Autism (NARPAA).

Please remember that all of these changes happening at the state and federal level require public input.  You have a voice.  Let your local, state and federal leaders hear it!

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.