Share the Journey with Jeneva: Self-Direction & the Good Life with Alicia and Al Wopat
Al Wopat {image description: A man with light skin, short dark hair, and a hint of beard and mustache wears a gray t-shirt with an image of Mickey Mouse. He stands in front of a lake framed by many trees.]
Self-directed or consumer-directed services are an increasingly popular option among state Home and Community-Based Services (HCBS) waivers. The Self-Directed Advocacy Network of Maryland, Inc., (SDAN) calls self-direction, “Living the life you want.” Jeneva interviewed Alicia Wopat, President of SDAN, to learn more about the group’s advocacy.
Tell me about Al and your family.
Al is a foodie! He eats every vegetable under the sun, and he’s happy to eat whatever his dad and I cook up. He loves curbside pickup, picnics, and hiking. During the pandemic, he’s been exploring different types and preparations of foods. Al has grown his skills by ordering online. Sometimes he sneaks in an extra order of mozzarella sticks! Al also loves the Pretty Boy Reservoir, which is near us in Baltimore County. He likes the feel of water and its sound.
Al is 28, and he is Autistic. He is extremely visual and sees things that most of us don't see. When he was a young child doing puzzles, he didn't need the picture to complete them. He was seeing the shapes. I don't think he sees the forest so much as all of the trees. It's a different way of looking at the world. We've been trying to see the world the way Al sees it, and to use that to his benefit.
Tell me how SDAN started and how you became involved.
I joined SDAN just after it started in 2016 when Maryland’s Developmental Disabilities Administration (DDA) began proposing changes to our state’s waiver. We became active. We created a website, started tweeting, and made it our mission to get the word out to the community at large. SDAN has become a voice for participants and their families to ensure that participant choice and control is the mantra in Maryland, and that paid family support is respected and continues to be an option.
What challenges have self-directed participants faced in Maryland in recent years?
“Self-Direction and the Good Life” [image description: A man with a Hawaiian-style shirt stands next to a young woman with shoulder-length black hair who wears a scoop-neck navy blue top. The background is an office setting. Both people are light-skinned.]
SDAN has worked hard to level the playing field for those who want to manage their own lives. Marylanders who self-direct their services have faced barriers to the flexibility and choices to which they once had access. Among these are access to overnight support staff, appropriate support broker hours, nursing support, and budget lines for administrative support common to traditional services, such as overhead expenses and house managers.
Most concerning, the specter of competency assessments came up, which undermines the work disability activists have done to dismantle institutional settings. In fact, CMS guidelines for self-direction presume competence for all participants and do not require states to administer competency tests.
SDAN has a bill in the Maryland General Assembly to address this, The Self-Direction Act of 2022. What did it take to get legislators involved?
We worked hard with the DDA to find solutions first. But, eventually, we turned to our state legislators for help. Delegate Karen Lewis Young and Senator Susan Lee took an interest in our families. This year will be the third time a bill about self-direction is heard in the Maryland Legislature. This past summer, Delegate Lewis Young created a legislative study group to gather information from the community and make a series of recommendations.
SDAN is proud to support Maryland legislation SB868 (introduced by Senator Lee) and HB1020 (introduced by Delegate Lewis Young), which should restore flexibility and participant choice and control to Maryland’s self-direction program.
Alicia and Al Wopat [image description: A mother and her adult son, both with light skin and dark hair, pose at the beach. The mother is looking into the camera, the son looks away with a hand up toward his ear. He wears a white t-shirt with red lettering.]
Do you think The Self-Direction Act of 2022 will pass this session and become law? How can Marylanders support the bill?
We are hopeful the third time will be the charm. If you are a Maryland resident, you can contact your state legislators and ask them to support SB868 and HB1020. You can download a letter template here. Our one-page summary of the bill can be found here.
If you’d like to do more, you can provide written testimony by establishing an account on the General Assembly’s website and submitting your remarks within the timeframe for each bill.
You can also join SDAN!
How have you seen SDAN members engage in self-advocacy?
SDAN has two self-advocates on our board, Sunny Cefaratti and Carmen Houston-Ludlam. Some self-directed participants are willing to provide oral or written testimony, and others who need more support don’t do that in a traditional way, but make their needs known, too. Al is like that–he’s very capable of telling you what works and doesn’t work, but he’s not into giving formal testimony for hearings and so on.
How has advocacy given meaning to your life?
I'm going on 65. My driving force right now is setting things up so Al can be happy when I’m gone. So my daughters can monitor him, but still live their lives. That's my motivation for putting my whole heart into this. My motivation is somewhat selfish; it’s for my son. But the good news is, by doing that, I'm helping a lot of other people who are in the same boat.
If you could define advocacy in a single sentence, what would be your definition?
The worst thing about the pandemic has been the lack of caring for others. I am literally stunned and disappointed by people's attitudes. That is the opposite of advocating, and that's why I guess it came to mind. So I’d say that advocacy is the simple act of caring about someone other than yourself.
SDAN at Maryland’s General Assembly, pre-pandemic [image description: A group of 20+ people pose in three rows in an office building’s atrium. The floor tiles are white with smaller black tiles interspersed. Four large white columns in a classical style dominate the background. The persons in the photo wear work-casual clothing and are dressed for winter. In the first row are several persons who are wheelchair users.]
[This interview has been edited for clarity and concision.]
Alicia Wopat is a resident of Monkton, Maryland and the proud mom of three adult children. She is a passionate advocate for those with developmental disabilities, and works to ensure happy and fulfilling lives. Alicia began working with SDAN in 2016, and currently serves as Board President. She has also served as a Board Member with Pathfinders for Autism since 2015. She has a background in Real Estate as well as finance and investments. She excels at research, and is thoughtful and creative when it comes to problem solving.
Jeneva & Rob Stone [image description: A mom with light skin & blonde hair poses with her son who is seated in a wheelchair, wearing a red shirt and ball cap. The mom wears a grey dress and blue print scarf. The backdrop is a red brick wall in an office building.]
We hope you enjoyed Sharing the Journey with Jeneva. Through these interviews we will share the advocacy journeys of caregiver/parents and disability self-advocates, inspiring us to forge ahead together. Send an email to Jeneva if you have any questions you'd like to see, or if you'd like to be interviewed for a future installment of this series!
Jeneva Stone is the manager of the Little Lobbyists blog. She's worked as a teacher, a government editor, and a Hill staffer. Jeneva is also a writer, with numerous publications in poetry and nonfiction. She lives with her son Robert, who has complex medical needs and disabilities, her husband Roger, their two cats and a dog in Bethesda, Maryland. Her second child, Castin, is currently a student at Middlebury College.