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.