Feature Issue on Self Direction

The promise of self-direction is truly a game changer for all people living with disabilities, and especially for those from historically marginalized racial, ethnic, and cultural communities.

The freedom and choice self-direction offers is vital to support culturally competent services and to support persons of color to live their best lives. Our study will provide unique insights into the barriers these communities encounter, not only in understanding the philosophy of self-direction, but in actually accessing self-directed services. As a Black man living with cerebral palsy, I am honored to share my experiences for this study in order to shape policy decisions about self-direction across the United States.

I find myself thinking about equity and access to meaningful information a lot. It’s a big part of my own personal story. Despite having a significant disability, I didn’t have any formal support services until I was 13 because my family didn’t know there were resources to help. Today I think about that when I read statistics about families of people with disabilities from these marginalized groups having a net worth of less than $3,000. I realize they may be struggling to care for a family member and so are unable to work. I’ve encountered so many families who don’t even know what waiver services are, much less self-direction. We have to provide information and resources in different languages, and in clear language, so more people understand their options. And to truly be successful, self-direction has to be led by the person receiving the supports. They’re often supported by family members or a team, but we have to empower that person with clear resources to make decisions and give them information about supported decision-making so they can make the best decisions for their lives. This is why I created a plain-language toolkit for self-direction as part of a fellowship I completed with SARTAC in 2023.

In Ohio, where I live and work, our system is pretty siloed and I realize that’s a common refrain, but our systems are pretty different depending on whether you are getting services as part of a managed care option. Managed care plans have their own challenges, including a lot of cost containment measures, but people in them may have more access to self-direction options than others do. For people who have the capacity to self-direct, it is a unique alternative that can allow them to find providers who truly meet their personal and cultural needs to live the lives they want. From what I have seen, however, the reality of staffing levels and overburdened case managers means that for people with higher support needs, it is difficult.

As an advocate and volunteer for several organizations, I’ve made a lot of positive connections and learned how people from different parts of the country are able to use self-direction.

In Ohio, there is really only one waiver specifically for self-direction, and people with intellectual and/or developmental disabilities (IDD) struggle to navigate the budget authority and other aspects of it. We need to empower them with skills to be able to make as many decisions as possible for themselves. A lot more people are capable of self-directing than people may think; they just need the right support to process the information. Another problem is the people in the system who are used to things being done one way for a long time. Self-direction is different. It’s more responsibility and not everyone is ready for that right away. Another barrier is that in Ohio we don’t have an extensive stream of providers to help with support brokerage services. We have service and support administrators, but they are the people responsible for case management. Some people see that as a conflict, and I can understand why.

Throughout my adult life (I’m 36), I’ve been on several different waivers, and today I use a mix of self-directed and traditional provider services. My homecare services are in a traditional model, but I self-direct my transportation services. One way I could exercise self-determination and live the way I want was to purchase my own vehicle and then I was able to get paid a milage rate to reimburse that expense over time. I predominantly work remotely, but I do travel to meetings, and I use the accessible car to be able to enjoy my community. Transportation is the lifeblood of a community and it’s a lifeline for people living with disabilities, and yet it is one of our biggest unmet needs. If a person with disabilities can get a vehicle and maintain it, it vastly improves their quality of life. My advocacy roles are what I call working hobbies, and I love to travel and go to restaurants, theaters, and shows, so transportation is very important to me. It absolutely enhances my ability to have friends because when I go places with people with common interests, we build relationships.

Job coaching is another important conversation in self-direction. So many of the traditional providers in the developmental disability service world have a narrow conception of what employment means and people are having to settle for positions that are in the flowers, filth, and factories areas. Providers know how to support that, but they often don’t know how to support going from part-time shift work to a full-time salary job, for example.

I think in a more traditional environment, professionals who have been in the field a long time may have misconceptions about the people they’re supporting. Self-direction is new and different and it’s difficult for our systems to let go of that control and allow that flexibility and freedom.

Self-directing allows people to find a provider who is truly able to help instead of giving control to an agency who doesn’t necessarily know them well. It’s the flexibility that sets self-direction apart. If something isn’t working, you can change it immediately. I don’t have that in my situation, but I have what I need because I’ve been working with the same support team for a long time.

It’s worth fixing the problems in self-direction because people typically know what they want and need most. They are the best people to make choices about their services and supports because they know what will uplift them and enhance their lives.