Living and Thriving with a developmental disability in Vermont
Andreas Yuan makes it clear he does not want to be underestimated.
“They think I am too thoughtless to know people’s thought [sic],” typed Andreas, on his iPad fitted with a keyguard, when asked about people’s assumptions of him. “They think I don’t know things.”
After all, he can understand three languages: English and two dialects of Chinese, vote, and keep up with the human rights protests in Hong Kong — just to name a few things. Not to mention he was living the life of a cross-country rock music festival-fanatic.
Andreas has Angelman Syndrome (AS), a rare neurogenetic disorder that mainly affects the nervous system and results in speech limitations, balance and movement problems, seizures, sleep problems and intellectual/developmental disability.
As his mother, Susan Yuan, puts it, “the man who discovered it was named Harry Angelman — but many parents sometimes call their kids angels. The primary characteristic behaviorally, with Angelman Syndrome, has been written in the literature as ‘excessive love and happiness. People with Angelman Syndrome are very easy to love because they give love.
As someone with AS, Andreas is non-speaking; he communicates via extensive, exhausting assisted typing sessions. He needs assistance managing his health and quality of life on a daily basis, including basic hygiene. He can walk, but sometimes requires a helping hand.
“People with Angelman Syndrome can have very close to normal comprehension,” says Susan, “but they can’t speak. And they require a lot of support in areas of daily living. So people who look at them think they are much more disabled than they really are.”
For Andreas to be at his full potential, and to thrive, he receives services through Upper Valley Services (UVS). One of the most significant benefits is the service of a Shared Living Provider (SLP) — Jason Guymon — who provides a home, friendship and all of Andreas’ care. In Vermont, the vast majority of people with developmental disabilities who receive support funded through the Department of Aging and Independent Living (DAIL) reside in homes with SLPs.
“The SLP program is a successful and cost-effective model of support, resulting in high quality-of-life outcomes and satisfaction for individuals with developmental disabilities,” says UVS Executive Director Gloria Quinn. “Throughout the pandemic, it has also largely proven effective in keeping safe those who might already be at a higher risk for complications stemming from becoming ill with COVID-19.” Gloria says this is because the home of a SLP is as safe as any typical household would be — in contrast with congregate care settings (such as nursing homes and group living arrangements) where COVID-19 outbreaks have been most prevalent.
UVS, like other Designated Agencies and Specialized Support Agencies serving people with developmental disabilities, focuses on individualized supports to ensure each person served has the ability to live the best version of his/her life possible as an involved citizen and contributing member of the community. For Andreas, this is where Jason comes in.
Jason is a year older than Andreas, who is in his late 40s, and shares his love for music and culture. He has been sharing life with Andreas for about 15 years and has committed to be there for him for life. They currently live in Underhill, along with Jason’s wife and two kids.
“I made this commitment because Andreas needs someone to take care of him and when I started taking care of him it was so rewarding,” Jason says. “I didn’t want to leave his future to chance. I care about him; I love him.”
Jason’s commitment provides Andreas with nurturing, stability and growth in his life, and the assurance for Susan that once she passes her son will continue to receive quality, individualized support. “I once did a calculation of how many people I thought had worked with Andreas, one-to-one, in his lifetime,” she says, “and that was about 20 years ago — and I calculated over 2,000 people, — because, he can never be without support.”
“[Being a SLP] is a big responsibility,” says Jason. “It means being a friend as well as a care provider.”
Susan emphasizes the importance of trusting her son’s judgment with service providers. If he doesn’t want to go with them, he doesn’t. With Jason, she says, Andreas has always gone freely and happily.
Having someone like Jason isn’t just about trimming nails and shaving, it’s also about advocacy, friendship, and similar lifestyles.
“The ideal is that the support person figures out what kind of a life the individual wants, and makes that life happen — the reality is different,” says Susan. “The reality is that you find a person whose interests match that person’s interests.” Susan has always had a career, which demands a need for support. But she also recognizes that even if she didn’t work, she could not give Andreas the life he deserves — because they simply have different interests. Also, there comes a time in many people’s lives when adulthood means that it is time to move away from one’s parents and into a life with other people their own age that they can connect with.
Jason and Andreas are both very social, says Susan. “At the time Jason started working with Andreas, Jason was working as a bouncer at Higher Ground. He would just take Andreas to work with him, and so Andreas got to know all of these bands.”
“A good shared living provider does fun things with me,” Andreas typed. “He takes me to concerts and bloody good interesting films.”
Cue a stint of 3-day Pearl Jam concerts in Philadelphia, and a month-long road trip to Florida for spring-break bachelorism outfitted with a three-night camping session at the Langerado Music Festival in the Everglades. These days, Jason and Andreas live a little more slowly, as men in their late 40s might, but nevertheless a fulfilling life for both.
Susan says if there’s anything that she could change about the arrangement, it would be the ability to find more respite workers, to give Jason a break.
Susan credits UVS for having the coordinated supports and structures that foster an environment Jason and Andreas can work together so fluidly. “Basically their [UVS’] value system is the best in the country.” she says “It’s partly because it’s an agency where everyone has worked directly with people with disabilities, and live and breathe the values.”
In the home of a shared living provider, a person like Andreas has the freedom to be himself. He can create his own routine, space, hobbies, adventures, and care. With Jason, he lives with a peer; someone at the same stage in life.
How did Andreas know Jason was the one for him after thousands of people assigned to care for him? “I realized it when he came to the house to meet me,” he typed. “I liked that he smiled a billion-dollar smile.”
Like many Vermonters with developmental disabilities who live with Shared Living Providers, Andreas has happily lived with Jason for many years and looks forward to moving beyond the pandemic and into a more active life with Jason and his family.
Upper Valley Services provides opportunity and assistance to families and individuals enabling them to safely live, work and maintain relationships within their communities.
For more information about Upper Valley Services, and to explore employment opportunities, including respite work, visit uvs-vt.org. For information about services and employment at an agency near you visit: Vermontcarepartners.org
This article is part of a series being produced collaboratively by members of the Vermont Care Partners.
Vermont Care Partners is a statewide network of sixteen non-profit, community-based agencies providing mental health, substance use and intellectual and developmental disability support.