October 2023: Climbing the Same Mountain Together

LENS, which stands for Lived Experience Network Speaks, is a blog provided by Meet The Need NC from our LENS Advisory Group. LENS includes individuals with intellectual and/or developmental disabilities (I/DD) experience, including people with I/DD, families, and caregivers with separate groups for those who speak English or Spanish.

We provide a space for them to share freely, but these opinions do not necessarily represent those of Meet The Need NC or all members of the LENS Advisory Group.

Self-Directed: A Tool to Ease the DSP Workforce Crisis and Expand Independence

This month’s guest blogger is Jon D’Angelo. 

The spectrum of need within the intellectual and other developmental disabilities (I/DD) community is vast because the diversity of the I/DD community is vast. For some the need is behavioral, for others physical, and for some both. For decades the traditional model to deliver Home and Community Based Services (HCBS) has been through providers which are Medicaid contracted private organizations that recruit, train, supervise, and deploy Direct Support Professionals (DSP) into the homes and communities of those requiring services. This model works well, especially for those with a higher level of need requiring specialized training. However, this model has also struggled under DSP wage stagnation relative to inflation, and increased need within the community. The Self-Directed program, however, takes the success of HCBS and elevates a higher degree of autonomy while lightening the load on the traditional providers.  

Self-Directed, available under both the North Carolina Community Alternatives Program for Disabled Adults (CAP/DA) and Innovations waivers, empowers families to reach out into their communities and find those willing and able to provide those services. Have a neighbor whose daughter is home from college and has known your kid with cerebral palsy since kindergarten? Under Self-Directed you can hire her. Is your coworker’s husband a retired nurse looking for something to do? Under Self-Directed you can hire him. Found someone on Facebook looking for a new career? Hire them. 

Self-Directed makes the individual their own provider, responsible for hiring, training and supervising those you and your family trust. From the moment of diagnosis, natural supports are taught (often self-taught) to the family on how to meet their child with I/DD needs. And are done so, in many cases, better than the professionals. Those skillsets are transferable to Self-Directed DSPs who can learn from the true experts: the individual and the family. That underlines a major difference between the two models, when someone applies for the job, they aren’t applying to work for an agency, they are applying to work for me.

As someone with Spinal Muscular Atrophy, a developmental disability in the Muscular Dystrophy family, I have used the Self-Directed model since I was a freshman at East Carolina University, in addition to a traditional provider. My needs fall in the category of ‘total care’. The overwhelming majority of the DSPs I hired were fellow students, and in grad school they were in my graduate school cohort. These prior established deep personal connections not only enabled full independence, but also person-centered care which in turn enabled personal growth and confidence. Self-Directed also gave me a degree of stability because I knew who was going to knock on the door every day, and I knew when things went wrong, they’d be there to bail me out. Today college students are my go-to source for DSPs, they’re (in theory) smart, motivated, have their act together, teachable and also looking for extra money. Name a college major, I’ve probably hired one. With Self-Directed I can find them myself, train them myself and manage their schedule myself. No prior experience? Great, you’ll learn about me – my way. Self-Directed combined with a live-in arrangement can take things even further by maximizing flexibility around care routines, pop-up community events and creating a built-in safety net. 

Self-Directed isn’t for everyone – it’s hard. Managing people is a skill, and firing people is extremely difficult. There are also no backups beyond what you set up yourself. In college at one point, I was managing a team of five DSPs, which combined with grad school was one of the most stressful periods of my life. But duct taped and strung together was a care system that at one point meant I didn’t see my parents for 33 days, which included a major illness. That care system enabled 4am study groups, bar crawls, and cohort beach trips: deep community engagement.

For those for whom it will work and willing to do it, Self-Directed takes pressure off traditional providers by allowing individuals to recruit people who wouldn’t even think of working for a DSP provider. For my brothers and sisters in diagnosis within the Muscular Dystrophy community, this is the model we preach to the new generation of transitioning youth. Especially for those going off to college, because some of the best potential DSPs are right in their dorm, and with Self-Directed, you can hire them. Just don’t panic if your kid is at a bar singing karaoke, they’ll be fine, promise!

About the author: Jon D’Angelo is a self advocate with a developmental disability on the CAP Choice waiver and the Innovations waiting list. He holds an MS in International Security Studies and a BS in Political Science, both from East Carolina. In addition to serving on the North Carolina Council on Developmental Disabilities, he works full time as a Market Specialist for an Employee Benefits Broker based in Atlanta.