This summer, Jess Lawhead got to go standup paddleboarding in the Boulder Reservoir near his home in Colorado. Now one day soon he’s hoping to take a trip to the ocean to learn surfing.
Jess, like many people with disabilities who use supports, has a history of being underestimated. People working within the traditional systems of support services have given Jess all types of labels that set the bar way too low, calling him challenging and difficult.
Thankfully, Jess and his parents Anastasia and Bob have ignored those labels and found alternatives to these systems. Throughout his life, he and his family have built their own system of informal and formal supports that allow him to live a life of his design through self-direction.
Today, Jess uses a Medicaid Waiver to self-direct his services. With the support of his family, Jess recruits, interviews and selects the people who work for him. They help Jess to get to where he needs to be and support him to accomplish his personal and professional goals however he needs.
Jess also receives services from two agencies that support self-direction. These agencies provide brokerage services and help Jess and his family self-direct by running background checks, coordinating payroll, offering mandatory training, and providing oversight and monitoring for Jess’ services. Jess’ mom, Anastasia, shared that these agencies help Jess’ family make self direction work.
Standup paddleboarding is just one of the many things Jess enjoys. He is employed part-time at a local pizza shop where he folds pizza boxes, and he’s learning to manage his money from his paychecks. He loves bicycling and going to clubs with his cousins and friends. As the University of Colorado (CU) is near his house, he’s become involved in campus life including volunteering to help a sorority. Being part of campus life also gives him access to University facilities and resources he wouldn’t have access to otherwise. Recently he’s become involved in the Bernie Sanders presidential campaign at CU.
None of these activities would have been possible if Jess relied on traditional services. He doesn’t have to be beholden to anything like a regular 9am to 3pm schedule set by a day program.
Ultimately, Jess directs his services and life. Through self-direction he determines his goals and priorities and drives the day-to-day supports he receives. Over time Jess has made strides to live more independently. After high school Jess was living in his parent’s furnished basement. But last winter, he decided that he wanted to move upstairs and live with roommates. Today, Jess’s parents live in their basement, while Jess lives with three roommates who are professionals around his age. In the spring, Jess’s parents will move to an apartment in Boulder as he is eager to live in a home without his parents.
Jess’s roommates provide some day to day support by living in his house. They also help him stay connected with his community. One of Jess’s roommates is the Co-Director of Queer Asterisk, an organization that provides therapeutic services, resources and connections for LGBTQPIA (Lesbian, Gay, Bisexual, Transgender, Queer, Pansexual, Intersex, Asexual) communities. Jess attends their events and has made lasting friendships.
Jess and his parents Anastasia and Bob shared with me not only about the life that Jess has designed and leads, but also about the strategies that their family has employed to make self-direction work for them.
Anastasia and Bob stressed that the primary reason that Jess has a great life is because, as a family, they have been very intentional to find opportunities and supports that facilitate relationship building in his life. However, their approach has not been typical of many people with disabilities. Their family have looked for community and connection in arenas that are authentic to Jess, which has led to a very organic network and community building process.
Anastasia noted, “some people look to religious communities [to connect people with disabilities with community], but there are other communities that we can look to,” she suggested that people “find those that are open and connected to lots of different people.” Jess has a network of friends with and without disabilities. It has been valuable that he has a community of friends with different identities, such as being connected to the LGBTQPIA community.
Jess’s parents Anastasia and Bob shared that having many formal and informal support relationships is important because self-direction require “intentional facilitation and “stick to-it-edness.” Jess needs various types of support throughout the entire day and evening. However, the Medicaid Waiver does not fully cover his living and service costs.
He relies on his parents and unpaid supports from his roommates and family to fill in. This can be a challenge. For instance, because Jess’s roommates are professionals they are busy. One is a graduate student, another is a therapist, and the third is a chocolatier. Sometimes Jess’s schedule conflicts with his roommates’ schedules. As Anastasia and Bob prepare to move next year, they have made finding more unpaid people to be part of Jess’s life a top priority. They are also exploring technology and remote services to get away from 24/7 support, recognizing that Jess also values his alone time as well.
Although managing self-directed services takes flexibility, a lot of time, and facilitation, Jess’s family have decided that self-direction is the only service model that will support Jess to have the meaningful life that he wants. They shared “we’re not the type that would cave to segregation,” referring to support models that keep people with disabilities away from their communities. When I asked them what advice they have for people and their families who are either considering self-direction and wary, or who are using self-direction and struggling, Jess’s parents returned to the two themes that they say have made it work for them.
First, they said that, from the start, families should have high expectations. High expectations, not only for their loved one with a disability, but for educators, service providers and communities as well. They also said that families and people with disabilities should seek out people that have high expectations, and refuse to settle for those who don’t. They recognized that not everyone has been or will be welcoming; but they have found a community who continue to embrace and value Jess.
They also indicated that, as a family, they have always valued informed choice. His mother Anastasia shared that “one thing that has characterized Jess since he was very young and unable to speak because of a traecheostomy, was that he always had access to choice and information about those choices.” Jess’s parents noted that valuing choice early in his life has paid off. It has benefited Jess, because he has always known that he is in charge of his life. It has also benefited people in Jess’s life who have learned to support him to make life choices that grow increasingly complex as Jess moves through adulthood.
Because Jess and his family use self-directed services, Jess’s mom described a “typical day” leading up to paddleboarding as follows:
“Yesterday, Jess went to a movie in the morning with his Aunt Sandy. They tooled around a bit, went to the pet store to see the animals, and had lunch at his favorite restaurant where people have known him for years. Then his Aunt dropped him off at his job at Cosmos pizza. After Cosmos, his Community Connector picked him up…”
And we’re back where we started: Self-direction allowed Jess to go to the Boulder Reservoir to learn standup paddleboarding while enjoying the last days of summer.
Blog post by Caitlin Bailey, Board Member, Alliance for Citizen Directed Supports
This week, the Alliance for Citizen Directed Supports is proud to be one of the presenters at the annual Home and Community Based Services (HCBS) Conference. This event brings together policymakers, administrators, managers, and all other stakeholders in the aging and disability services fields. Over 1,500 people are expected to attend. The conference is a key opportunity for the people who work in this field to learn directly from people who use HCBS services including the HCBS Waiver.
That’s why it’s so exciting that the Alliance will be there as part of a growing movement including other organizations dedicated to advancing self-direction. Our presentation will be led by Alliance Board Members Lydia Brown and Marian Frattarola-Saulino:
Session Title: Realizing Self Determination: People with Developmental Disabilities Directing Their Services
When: Thursday, August 29, 11:30-12:45pm
Where: Essex ABC, Baltimore Marriott Waterfront
Why: The Alliance for Citizen Directed Supports is all about supporting and sustaining self-directed services and supports, but we also understand that being in charge of your life isn’t just about your services. We are seeking to be an organization that promotes and shares the importance of each of us being part of communities where we are valued for who we are and what we bring. We hope to drive innovation in the field by bringing together people who self-direct with the support they design, deliver and evaluate with their chosen allies.
The conference schedule is available here; you can find our session information by using the search bar, or scroll down for the drop-down menu for Thursday.
If you are attending the HCBS Conference, please come to the Alliance session at 11:30am on Thursday August 29. We hope to see you there!
Robert Zotynia is a member of the Alliance for Citizen Directed Supports who self-directs his own services. Our board member Marian Frattarola-Saulino interviewed him for about how self-direction has helped him live a fuller life.
I used to go to a day program. It was okay for a while but most of the time I was bored. I didn’t get to decide what I wanted to do every day. I had to do whatever my group was scheduled to do, so I stopped going and hired staff to work for me at my family’s house.
Then I got sick and it was hard for my family to help me all of the time. Because of the pain I didn’t sleep much. We decided to try a group home. I lived there for about a year and a half. I still didn’t get to do what I wanted every day because the staff were always busy doing paperwork or I had to wait for the shift to change. Sometimes I made plans but couldn’t go because there wasn’t enough staff to stay with my roommate. So, my mom and I decided I would come back home.
My supports coordinator told me about self-direction. My mom helped me understand it. We also read about it. We signed up for lots of newsletters that helped me understand what it was and how I could use it.
The best thing about self-direction is I get to decide what I do and when I do it. I plan my days the way I want and can change my plans whenever I need to. I also really like hiring my staff. I get to explain the rules for working for me and train them on things that I think are important about me.
I think self-direction is great. I’m much happier using this model than traditional programs. However, it requires a lot more work so I suggest you get a supports broker to help you set it up, find staff, and learn about the rules and regulations. And the rules change a lot, so it helps me to have a broker to keep up on everything.
I found out about supports brokers from reading all the newsletters and announcements that I get in my email. My mom also told me about it. She learned about it from her job. So, we talked to my supports coordinator. He helped us figure it out. He helped us understand that I could hire a broker through my financial management service, or I could use a brokerage.
My broker helped me find and interview staff. Then we talked about it and decided who I wanted to hire. I use the vendor fiscal model through Palco so we have to fill out enrollment packets for everyone we hire. My broker helps me do this and helps me talk to Palco if there is a problem. They also help me find things I want to do in the community. We do lots of person-centered planning and thinking so everyone knows what my preferences are. My broker helped me connect with Self Advocates United as 1 and now I work for them. So now we are working on a plan for when my mom is not able to help me anymore. My broker helped me facilitate a PATH and helped me invite people to do this with me. We also decided to start a microboard. The board members are friends and family who will help me manage my life. My broker is helping us file all the paperwork to become a nonprofit and is suggesting different types of technology so I can communicate with the microboard and also so we can meet by video. There’s lots of other ways the broker helps me but mostly they make it so much easier for me to control my life.
It can be hard to find good staff sometimes. I’m really lucky that I have great staff right now. It’s also hard sometimes to check everyone’s time sheets so they can get paid on time. Tracking utilization is really hard, but my broker helps me with that. I guess the biggest challenge to self-direction is when a staff quits or gets sick, trying to find someone to fill in.
It’s definitely worth it. It takes some work and some coordination but because I am using self-direction I am living MY life, not someone else’s idea of what my life should be. I get to decide what I want to do and I get to go and do things when I want to – not when it fits in someone else’s schedule or idea of what my life should be. Everyone wants a life of their own – I’m happy that I’m leading mine!
Robert Zotynia also spoke about his experiences with self-direction this week at the Summer Leadership Institute hosted by the National Leadership Consortium on Developmental Disabilities.
This is a resistance space. No police will make us safe.Lydia X.Z. Brown
Disability Justice is an intersectional imperative for our liberation – it is also everyday practice, guidance, framework, principle, vision, world-making.
I begin everywhere by asking us to pause and ground ourselves. Use this space the way your bodymind needs. Your bodymind deserves to be here, to be messy, to take up space. Now let us pause, tune into what our body minds need us to feel, to know, to understand about what we need, desire, crave. Let us feel the full weight of what we carry. Our righteous anger, our grief, our joy, our exhaustion, our trauma, our excitement – all that we bear.
This is for the sick, the bone weary, the wobbly, the leaning, the stuttering, the signing, the overloaded, all of us who are disabled, chronically ill, mad, neurodivergent, blind, deaf, survivors of other people’s hate and pity and fear and revulsion.
This is for us queer and trans folk at the margins of the margins, struggling against queermisia and trans hate and ableism and constant onslaught of violence at the intersections.
This is for us sick and disabled folks here who are negatively racialized, from colonized communities and nations, and bear the brunt of white supremacy embedded in rainbow capitalism and pinkwashing co-optation of our symbols, our history, our communities. Here from Lenapehoking, stolen and occupied land, to Tibet and Palestine and beyond.
Ki’tay Davidson reminds us that we are all interdependent, as ableism makes invisible the ways abled people are dependent and needy while pathologizing the ways disabled people are dependent. We need each other to survive, to fight, to resist, to build anew.
Mia Mingus reminds us that ableism is connected to all of our oppression because it undergirds notions of whose bodies are valuable, desirable, and disposable.
Talila Lewis exhorts us also to practice disability justice by honoring the whole humanity of every person, and let us do so: let us remember our ancestor Marsha P Johnson, whom we honor this month, was a Black trans woman who did sex work AND gifted us with her mad disabled brilliance.
This is for us, who live and struggle now, to build the kinds of worlds and communities we want and dream and deserve. This is a reminder that in our brokenness, our frailty, our precarity, our neediness, our limitations, WE DESERVE TO BE HERE. we deserve love and care. We deserve each other.
Imagine… What justice feels like, what freedom tastes like. That world, honors and affirms all of our bodyminds in all our complexities, and supports us not merely in living but in thriving, in community as we belong. This is the world where we have achieved Disability Justice.