Alliance member Jason Ross identifies as autistic, and began self-directing his services in 2016. He has a Master’s degree in disability studies, is enrolled in film school, and enjoys horseback riding. Recently I caught up with him over the phone where we discussed the challenges and benefits of self-direction, and how he has overcome doubt to get where he is today.
Experts told Jason and his family that he would live in a group home after high school, and believed that college and a meaningful career were off the table. But today, Jason, who lives in New York and is forty-years-old, has a career he is proud of and is working on his second graduate degree. Jason works part-time for an Independent Living Center. There, he is as a peer specialist for adolescents and young adults who are transitioning into adult services. Soon, Jason will begin training to be a Support Broker to help his peers who also want to self-direct. Having earned his Master’s of Arts degree in disability studies last May, Jason is also now taking non credit classes at the School for Visual Arts to learn to direct films. He plans to start a film company in the future.
Jason is proud to be an autistic person, and intentionally uses identity-first language to describe himself. Autistic and disabled people are inundated with negative rhetoric and images of disability. This negativity can hurt their confidence and wellbeing, so Jason feels it’s vital to share his pride in being autistic. Fittingly, Jason’s birthday is on Autistic Pride Day.
Making the move to self-direction took years of self-advocacy. He began the process in the early 2010s because he wanted to learn how to “be comfortable with all of life’s responsibilities.” To get to self-direction, Jason had to reject what he and so many disabled people have been told.
Jason was approved for self-directed services in 2014. The two-year process that led from his approval to beginning self-direction in 2016 was a struggle. “I find that specifically when it comes to self-direction… people have all these assumptions about autistic people. It doesn’t matter what kind of impairment they have; they have all of these assumptions that aren’t always true, but they think they are.”
Part of the struggle was getting his parents to be comfortable with self-directed services, who “had a hard time letting go.” The process led to some tension and power struggles as he looked for his own apartment and worked with a Support Broker to transition to self-directed services. As he shared, “you love your parents, you love each other — but even with non-disabled parents and children, there is a power struggle there too.”
Jason continued to advocate for himself, though, “because I had a lot of fight in me, tenacity, I knew I could do it.” In 2016, he began self-directing. With the help of a broker, a team of direct support professionals, and his Circle of Support, Jason successfully began managing his self-directed services.
I learned from Jason about the incredible responsibility that comes with self-directed services. It takes intentionality, accountability, and self-confidence. Maybe because getting to self-direction took so much effort, Jason takes the role of directing his supports very seriously.
What Jason has learned about responsibility and leadership in graduate school and, now in film classes has helped him be better at self-direction: “In film classes, I’m learning how to direct. Learning that’s about taking responsibility for everything. That’s kind of like self-direction. That’s been very helpful for me. With self-direction, I’m responsible for everything. If I don’t do it, I have to take responsibility for it. If I’m in film school and my actor does something, I take responsibility for what my actor did.”
Although he has full control over his life and his choices, he still works with the people who support him to help them “understand the ideas of person-centered, my choices, my control.”
Earning a master’s degree in Disability Studies has helped him better educate and train his Circle of Support and parents. His parents still have doubts at times. “[Self-direction] brings on a little bit of fear still. See, I’m controlling my life now and taking risks, and that makes them well… that’s every parent through, in traditional services too. Lots of parents really don’t want to let go, but it’s a process.”
The people who support Jason throughout his day help him to stay on track to accomplish his personal and professional goals. He spoke very seriously about his role in managing his own time and the people who support him, again comparing it to the role of a director. “I didn’t realize how much the director is the person who leads, takes charge and takes responsibility. That’s like with my Circle of Support [and staff]; I have to take responsibility for them too. If they say something wrong or bad to me, I can take responsibility for that too. Maybe I said something in the wrong manner that I need to correct.”
Jason did reflect on the toll that people’s doubts about his abilities have had on his self-confidence. When he is hiring and training his staff, he looks for people who will focus on his strengths and help him to build his self-confidence. His parents and Circle of Support are crucial to providing positivity and affirmation. He is also “working on not saying sorry anymore,” recognizing that “if I say sorry too much, it makes people think I’m unsure of myself.”
As I was reflecting on our conversation, I realized that our system doesn’t talk enough about the importance of self-confidence for people with intellectual and developmental disabilities. There is some research discussing confidence for people with physical disabilities and people who have an identity that would label them as a ‘minority’ or ‘other.’ The results from those studies are consistent. When people hear that there is something wrong or different about them for a lot of their lives, their confidence goes down.
Self-direction promotes autonomy and control. A major challenge disabled people face to self-direction is others doubting their abilities to control their own lives. Jason’s story reminded me why it’s so important for groups like the Alliance for Self-Directed Supports to advocate for the right of people to self-direct their services.
As we wrapped up, I asked Jason what advice he would give to other people who are thinking about using self-directed services. He told me that, even with all of the responsibility that comes with it, and even though it can take time to make it happen, people should absolutely choose to self-direct.
He recognized that “for some people, it can be tough at first—but the only way to do it is to actually do it.” For Jason, self-direction has helped him learn to take charge of his life in every way. It has shown him the power of perseverance, that he can and will achieve any of his goals, even if it takes a long time and a lot of failed attempts. His advice for anyone who wants to self-direct is to “work on it and work on it and work on it until it works.”
by Caitlin Bailey, board member, Alliance for Citizen Directed Supports
In a positive step forward for the state, Pennsylvania Governor Tom Wolf recently announced the closure of two of the remaining four state centers for people with intellectual and developmental disabilities (I/DD) within the next three years. However, many residents of the communities nearby these centers — Polk and White Haven — have opposed the closings. At a recent community hearing in White Haven, our member Robert Zotynia and board member Marian Frattarola-Saulino testified in support of the closures of both centers, and helped to educate the community about self-direction.
The Alliance for Citizen Directed Supports was founded with the intention of ending all facilities like Polk and White Haven that segregate people with intellectual and developmental disabilities (I/DD) away from their communities. Instead, as both Robert and Marian testified, all people with IDD should live in their homes and communities with supports that they direct. It is a basic human right that all people should have control over their lives, and facilities like Polk and White Haven deny people those rights.
On no occasion have we ever concluded that a person’s support needs were too complex to be supported in their home and community.Marian Frattarola-Saulino
Self-directed supports allow individuals to choose and train the people who provide them services. It allows them to determine what is most important to them being successful in living fulfilled lives, not an institution deciding what “success” means for them. As Robert Zotynia testified:
We do lots of training, and I get to be the co-facilitator. We don’t just teach them the stuff the government makes us teach, which is really important stuff, we also teach them about me, the things I like to do, and how I do them. And that is what I think is really the most important stuff!Robert Zotynia
The closure of the Polk and White Haven centers was unfortunately met with significant opposition by local community members. Even though institutions like these have long been proven to be harmful and inhumane, there is a lack of education about alternative models to institution provided care. That is why the Alliance for Self-Directed Supports exists, and why it was important our members were there to testify.
The full statements Robert and Marian delivered were as follows:
My name is Robert Zotynia. I work for Self Advocates United as One as a power coach. I am 32 years old and I live in my own home. I also have complex medical and behavioral health needs.
My mom and I share our house, and my staff help me with everything I have to do. I use participant directed services, and I have a supports broker to help me.
One of the reasons I like participant directed services is that I get to pick my staff, and I get to train them. We do lots of training, and I get to be the co-facilitator. We don’t just teach them the stuff the government makes us teach, which is really important stuff, we also teach them about me, the things I like to do, and how I do them. And that is what I think is really the most important stuff!
I want to tell you about some stuff I do. I am an artist. I am working with the Office of Vocational Rehabilitation (OVR) to figure out how to sell my art because I need money to pay my bills. I also like to volunteer. It is important to me to volunteer, because a lot of people have helped me and my family, and we think it is important to pay it forward.
I’m also an advisory committee member for the Person Directed Housing and demonstration grant, and a member of the North East Regional PDSS Expert Council.
I am a registered voter, and I write to and meet with my elected officials a lot to tell them about the things that are important to me and my family.
I use lots of social media. I am on Facebook and Twitter, and I am working on my LinkedIn profile.
Besides all that, I go to a wellness clinic and the library every week, run errands, and help keep my house clean. I have my own credit card so I can pay for everything I need and stuff we need for the house, but I have to watch my budget. My staff are good at helping me with that.
I like having fun sometimes too. I am really into music and go to concerts whenever I can.
I like going to a local pizza shop on Monday nights for pizza and to listen to the band, one of my staff found it and we go as much as we can. We have been going so much that people are starting to remember me, I even met the band. My mom said that I am building social capital, but I just like to say I am making friends.
I like my life. I like doing what I want, when I want. And I really like having staff who I choose. My staff help me with everything, especially managing my health. I was very sick a few years ago, but now that I have good supports I haven’t had to go to the emergency room in over 2 years.
One day my mom won’t be here to help me and we talk about that a lot. I want to keep living in my own home when she’s gone. So, we’re working on a plan now with help from my circle of support. They’re going to help me manage my finances and to make sure I have the resources to take care of my house. I know my supports broker will keep helping me, so I will always be able to manage my staff when she is gone. Mom says that makes her sleep better at night.
Thanks for listening to what I had to say.
Self Advocate, SAU1 Power Coach
Thank you for the opportunity to provide testimony on the closure of White Haven Center.
I represent the people with disabilities, their families and staff who use the services offered by our community service provider organization. I have been a community service provider all of my career. My colleagues and I have supported many people to move from State Centers and numerous psychiatric hospitals into homes in their chosen communities. This was only done successfully when we worked in partnership with the people, their families, and the staff who had known and cared about them for many years.
On no occasion have we ever concluded that a person’s support needs were too complex to be supported in their home and community. In fact, we see the job of the community service provider to either have or gain the expertise, knowledge and skills necessary to support someone to live safely as a valued member of their neighborhood and community. Again, this expertise is in part, gained from people who know and care about the people supported.
People with complex needs CAN and DO have really good lives as members of their communities. We know that for this to be possible for people who have lived in institutions- or have been served institutionally- they need holistic support to be healthy and secure in their new environments, to learn to responsibly use the freedom they did not always have, and to develop relationships so they can be healthy, safe and fulfilled in their lives.
We understand the fear around, and know a person’s transition needs to be thoughtful, intentional, and with the person themselves holding the highest level of control- with a team of very supportive and knowledgeable people around them to listen and learn from them, and from each other, every step of the way.
As a community service provider, we support people in many communities throughout PA, with significant and complex behavioral, communication, medical and psychiatric support needs, exclusively in their own homes and communities.
After 15 years, we have established without question that the more complex and significant the support needs, the more compelling the rationale for:
1) enabling the person and their family to control many if not all aspects of their services;
2) living in a place they choose, with people they choose to live with based on compatibility, interests and other factors not diagnoses
3) a focus on strength-based assessment and planning, with assistive and independent living technology considered as components of the support system
4) an emphasis on building and sustaining connections within people’s communities for all of their health, career, social and relational supports, with assistance from a workforce that they themselves choose and manage, with the help they design and direct
Our efforts are geared toward making services that are person directed, family centered and community based, a reality for all.
Co-Founder and Executive Director, Values Into Action
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.