Families of Developmentally Disabled Adults Struggle to Avoid 'The Cliff'

Annie Taubenfeld is a 27-year-old from Baltimore with three part-time jobs. She collects and washes eggs at a farm, sorts and folds clothes at another job and organizes silverware and other tasks at Sam’s Canterbury Café. Annie, who lives with her parents, also designs her own line of greeting cards, which are sold at her local Whole Foods. She also has autism.  Because of her disability, Annie needs some extra help, but is otherwise capable of taking care of herself and having a fairly independent lifestyle while living with her parents. Annie might be able to live away from her family with staff support if she were able to find an affordable place to live that is well-suited to accommodate her needs. For Annie and others with disabilities, housing that is safe, affordable and accessible is rare. In Maryland, nearly 75,000 working-age adults with disabilities rely on a $773 monthly check through the Social Security Administration as their main income – nowhere near enough to cover the average rent for a studio apartment in the state – $1,049 – or other necessities like food and medicine.  As a result, 75 percent of adults with disabilities live with family members, according to Jillian Copeland, a Rockville disability advocate and mother of four.  As those family caregivers grow old, affordable housing options for their children are extremely limited, Copeland added. When developmentally disabled adults reach age 21 they are too old for public school and no longer eligible for special education services.  Gone, too, are the comforting routines, structured environment and social interaction of the school day Copeland calls this “the cliff.” At home and without the structure of a job or school, often unable to drive or make plans with friends on their own, Copeland said, isolation, loneliness and depression set in.  Nearly one in three young adults did not participate in a community last year, Copeland said. Annie Taubenfeld peddles her “Anniegrams” greeting cards at her local Whole Foods. While their classmates are concerned with college applications or finding a job, people with disabilities like Annie and Copeland’s 19-year-old son Nicol are concerned with applying for Social Security’s supplemental security income and disability support they need to survive. What comes after falling off the cliff? For Copeland, it was creating a community – an apartment building that was not just affordable and accessible, but provided programs for its residents to socialize, learn job skills, gain independence and be included. Copeland and her husband, Scott, are the prime movers behind Main Street – a planned building in Rockville Town Center where 18 of the 70 apartments are designated and designed for adults with disabilities. These units will be equipped with technology to accommodate disabilities like automatic stove shut-offs and have more space for wheelchairs than required by the 1990 Americans with Disabilities Act. Many of the state-subsidized apartments are not ADA compliant because they were built before 1990.           Main Street is a nonprofit project funded through individual donations and a grant from the state Developmental Disabilities Administration. Copeland said they’ve raised $5.6 million so far and need to raise $2.4 million more to begin construction, something she’s confident will happen later in 2018. Main Street will be located just steps from the Rockville Metro station – ideal for people like Nicholas Jennings of Silver Spring, the 23-year old son of Ellen Jennings. Nicholas, who has autism, cannot drive himself but is perfectly capable of riding the Metro, Ellen Jennings said. The ground floor of Main Street will be a 10,000-square foot community center that Copeland said is designed to create an inclusive culture for both disabled and non-disabled adults to form a community. The center will have a movie theater, workout room, garden, and a coffee shop with employment opportunities for disabled adults. Ellen Jennings said most families need to be wealthy to afford housing and support staff for a disabled adult. “The housing that is available is either substandard or almost impossible to get,” she said. Maryland has two forms of rental assistance for the disabled at the state and local level. The state subsidizes rental units through the U.S. Department of Housing and Urban Development Section 811 program that are designated for low-income, elderly and disabled residents who earn less than 30 percent of the state median income. Patricia Sylvester, director of housing policy for the Maryland Department of Disabilities said these units currently house 52 residents and have a waiting list of more than 2,000 people. The applicants given priority are those who can’t afford to leave institutions, are at risk of being institutionalized, are living in group homes or are homeless. This doesn’t fit the description of people like Annie, Nicol, and Nicholas, who just want a shot at independence.   The other type of assistance is done at the local level through individual housing authorities that give out tenant-based housing vouchers. These vouchers allow recipients to choose a unit and pay a fraction of the rent while said local authority covers the rest.  However, Sylvester said these waitlists are significantly longer and target higher incomes than adults on SSI. John Bogasky from Silver Spring has a 26-year-old disabled son also named John Bogasky who just received his housing voucher through the Montgomery County Housing Opportunities Commission, four years after he applied. This waitlist holds more than 30,000 people, Bogasky said. When Bogasky first became eligible to apply, he couldn’t; the wait list was so long it temporarily closed.  A rendering of the Main Street housing complex in Rockville.   To provide more housing for people with disabilities the state of Maryland partnered with the Harry and Jeanette Weinberg Foundation to build housing for people with disabilities scattered across the state. The Weinberg apartments have 20 units across the state, with 1,362 people on the waiting list. Given the shortage of affordable housing for people with disabilities, and aging family caregivers, Copeland said parents like herself are constantly wondering what is going to happen when they die and their child is alone. Raising a child with disabilities, said Copeland, “is a lifetime commitment and a lifetime challenge.  Many of these parents think ‘what the f— is going to happen when I’m dead?’” Annie’s mother Ami Taubenfeld said the most horrifying thought for her is that her daughter’s first time living apart from her parents is when mom and dad are gone. “How does a parent sleep at night worrying about that?” Taubenfeld said. Other parents Maryland Matters interviewed for this story said they feel the same way. Because a number of adults with disabilities have difficulty making plans or thinking ahead, Copeland said their parents are still largely responsible for their children’s lives. Even with support like aides and day programs funded by the Developmental Disabilities Administration, Copeland said “the mother and father are still the quarterbacks.” The Main Street Community Center will provide vocational training services for people with disabilities who want to join the workforce. The U.S. Bureau of Labor Statistics reported in June 2017 that 80 percent of working-age adults with disabilities do not participate in the workforce, though Ami Taubenfeld said many could with proper job matching. Taubenfeld is the executive director of Itinerus, an organization dedicated to finding employment opportunities for adults with autism, and said disabled adults in the right job positions can not only meet but exceed employer’s expectations. She said adults on the autism spectrum are especially task-oriented and enjoy repetitive tasks that non-disabled people might struggle with. “They’re not interested in water cooler conversation… you give them a job and they do it to completion,” she said. Taubenfeld’s daughter Annie’s s three jobs and her own line of greeting cards, called Anniegrams, are organized through Itinerus. Asked about the best part of her days at Itinerus, Annie Taubenfeld said, “Making Anniegrams and my friends.” Ellen Jennings said the community space at Main Street will help ensure that disabled residents like her son can thrive in a community setting with both disabled and non-disabled neighbors. She said this will help prevent the isolation that many adults with disabilities face. Jennings said the plan is for her son to move into Main Street when it opens in 2020.   The community center will also be open to non-residents, disabled and non-disabled, who pay a $50 membership fee for access to the community center and Main Street member events. Copeland said 1,000 people already have joined, so members of the community at large will be able to interact with residents of Main Street. Jennings said that while the inclusiveness of Main Street is “fabulous and absolutely essential,” it is also essential that her son is surrounded with other developmentally disabled adults as his peer group. Main Street does this for Nicholas. “He is going to have people who actually want to hang out with him,” Jennings said. Watch for our next story profiling some of Maryland‘s disability advocates.

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