Frontline Initiative Trauma-Informed Care

NADSP update:
The emerging roles of DSPs


Joseph Macbeth is the Executive Director of NADSP

Major changes are coming that effect how we will support people with disabilities. New regulations require all stakeholders to understand informed-choice and person-centered practices. For the most part, these changes are driven by the Centers for Medicare & Medicaid Services (CMS) through Federal Home- and CommunityBased Services regulations. There is an even stronger emphasis on personal autonomy and a need for greater access to integrated settings.

New CMS rules address big issues. Of concern is, helping DSPs effectively support people to make informed decisions. Are they prepared? Do they have the tools, resources, and skills to take on this responsibility?

Soon, expectations for DSPs’ work will be changing. Now more than ever, DSPs will be front and center in building social capital, helping to find and keep meaningful employment, promote social inclusion, and work closely with families. They will have to do all of this while still providing safe environments, assessing risk, and promoting choice. If the new CMS regulations open more doors for people with disabilities, how must DSPs help people move through them?

We hope there are many stories like this: I met Ed nearly twenty five years ago while working as a DSP. Ed has cerebral palsy and needs a lot of technology and direct support throughout his day. At a young age, he was placed in an institution because his family could not meet his needs. From there, he moved into a nursing home but he was still able to go to school, earning his high school and college degrees. Eventually, he moved to another part of the state and into an Intermediate Care Facility (ICF) with eleven others.

Around this same time, New York received its first Medicaid waiver that offered people with disabilities access to new opportunities. Ed seized these opportunities! It wasn’t long before he was leading, sweet talking, and challenging his team to find ways to support his move out of the ICF and into his own place. He was blazing new trails and getting people to think differently about choice, risk, and responsibility.

I can still remember the planning meeting where we had to talk about safety. The question that’s always asked when anyone with a disability wanted to move from a safely staffed residential setting into a more “risky” one where staff wouldn’t always be available; “What about a fire”? After a short pause and with a familiar look in his eye, Ed said. “I’d rather die tonight in a fire in my own home, than live to be 100 years old living in an institution”. The meeting room fell silent and it took us a few long seconds to see what Ed was telling us. At that moment, you could feel the energy driving us to help Ed get what he wanted for his life.

With an extraordinary commitment from DSPs, Ed is still living in his own place, getting tattoos and jumping out of airplanes. Ed has been living his life on his terms. His path has had some problems and heartache; but whose journey hasn’t?

You see, in Ed’s situation, the “system” didn’t get him the life that he wanted. It only gave him the opportunity for that life. By the way, it was DSPs that helped Ed get the life he wanted. They continue to walk side-by-side with him every day.

Please stay in touch with NADSP. We want to support you through these ever-changing times.