An interview with Alliance members Jess, Anastasia, and Bob Lawhead
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.
Self-Direction and determining your own goals in life
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 Jess’s many activities in his community. 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.
Moving towards independence
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 West 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.
Fostering Self-Direction together as a family
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.
Overcoming challenges with Self-Direction
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.
Self-Direction and informed choice
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