To pick up my brother, I drive 10 minutes on the highway from my parent’s house, take a right at the exit, and another right at the sign with the swirly sun. I text him from the parking lot, wait as he lugs his laundry downstairs and signs himself out at the front desk. While I sit, someone rides past me on a scooter, CVS bag looped around her handle bars and "CHAPEL HAVEN" lanyard around her neck. She settles on a bench beside a young man with a matching lanyard. He wears headphones, bops his head to the music.
Joe, age 28, takes five minutes to get to the door, 15 to cross the parking lot. “Wait wait, that’s my buddy,” he calls to me, hugging the man with the headphones, shouting to a friend across the street. Once in the car he asks slyly, “Can we go to Dunkin' Donuts?”
I agree only because my older brother has lost fifty pounds since last year, when he moved to Chapel Haven’s residential “transition program” for adults with developmental and social disorders. Before moving to the brick complex on Whaley Avenue in West Haven, Connecticut, Joe lived in my parents' house, two towns over. In the six years after he graduated high school and before he moved to Chapel Haven, Joe worked part time, on and off, attempting to find structure and purpose outside of school, without the support of special education services. For two years Joe worked a few hours a week in a toy store owned by family friends; he spent a year filing papers for a neighbor once a week; for two summers he participated in job training through the Bureau of Rehabilitative Services. Each post was temporary, and after his session completed, my parents returned to an empty drawing board.
Joe doesn’t have a developmental or social disorder like autism, Down Syndrome, or cerebral palsy. But as an adult with mental and physical disabilities, including a severe mental illness, the world outside our home has never been easy for him to navigate. Many days, his only exercise was the walk from his bedroom to the family room, where he watched TV for hours.
Now Joe walks from his apartment to the main building for classes, back to his kitchen for lunch. He walks to the bus stop to get to the grocery store and home again, where he cooks dinner in his apartment. He walks to CVS. Out of curiosity, I call the store to ask about Chapel Haven’s interaction with its surrounding neighborhood, picturing dozens of matching blue lanyards walking through the neighborhood on Saturday afternoons. The clerk on the phone tells me, “Yeah, [Chapel Haven students] do come here a lot. They buy things like, you know, basic needs stuff, like toothpaste and that kind of thing. They come here for a lot of snacks.”
Founded in 1972, Chapel Haven is a nonprofit organization. Its brick buildings on Whaley Ave serve as a hub for four different programs: REACH, Bridge, Supported Living, and Community Life. Ideally, members participate in programs on a path culminating in independent living. My brother is in his second year of the two-year Residential Education At Chapel Haven (REACH) Program. He lives in an apartment at the Whaley Ave facility and attends day-long programming from the moment he wakes up to the moment he goes to sleep. Though it is only his first step with Chapel Haven, asked to describe the program Joe answers, “total independence.”
According to my mother, “One of the best things about Chapel Haven is how scheduled it is.” Joe explains an average day: “I wake up at eight o'clock; the lady comes and says, ‘Joe, your medicine’s on the table.’ And another lady comes and says ‘Joe, turn the TV off.’ And then I go to class and the lady says, ‘Joe, you’re late to class.’ And I say, ‘I was sleeping.’ And then I go to the first class and then I go to the second class.”
After his morning classes, Joe eats lunch and takes his afternoon nap. “After lunch then I have class until life skills and then I’m done. Life skills is when you clean the apartment with someone and make dinner. After I watch TV. Sometimes we have parties, but we’re usually just tired and don't want to do anything. On Tuesdays and Thursdays Kimber comes over.” Kimber is Joe’s girlfriend. They met at Chapel Haven last year.
Next year, Joe will move to the Bridge Program, remaining on campus with a more individual and flexible schedule. After Bridge, Joe may move into group homes in the surrounding neighborhood, as many Chapel Haven alumni do. Though he will ideally obtain part-time employment, my parents will pay the rent of his future apartment.
Through Chapel Haven’s Supported Living Program, adults living independently can receive financial, housing, employment, and health-related services from a “support coordinator.” Adults participating in Community Life frequent Chapel Haven for classes encompassing yoga, street safety, and comedy TV or social events like pizza parties, movies, and dances. Some affiliates volunteer in groups at places like St. Ann’s Soup Kitchen and the New Haven Public Library. According to Catherine Sullivan-DeCarlo, the Vice President of Admissions for Chapel Haven, they serve over 250 adults in the Greater New Haven area.
The current landscape of services for adults with disabilities is a bureaucratic mix of public assistance and private programming. In the absence of a cohesive publicly funded system post-public school, it often falls on parents to research, fund, and advocate for their children’s needs after they become adults. Carol Albert, mother of Chapel Haven community member Michael Albert, tells me about eight different local and national programs, including The Autism Spectrum Resource Center, The Foundation School, and The Learning Center when I call to ask her about services available to adults with disabilities in Connecticut. She comments, “Well, you know, there may be a broad variety of programs, but the bigger question is are there programs that are either tailored or flexible—and knowledgeable and trained—to the particular diagnosis? Does it have the capacity to be individualized?” According to Mrs. Albert, those are the questions that concern parents and advocates.
Michael Albert and his wife Elizabeth live a few blocks from Chapel Haven. Michael has belonged to Chapel Haven for 10 years; he currently attends recreation programs and special education classes. Though Elizabeth no longer receives services from Chapel Haven, the two live in the same neighborhood and frequent the same businesses as many Chapel Haven adults. Michael’s mother tells me, “I think the community is truly very supportive. I always ask if [store owners] know Michael and Elizabeth and they do—they are respected in the community.” She mentions the local CVS.
It is not, and has never been, typical to treat the mentally disabled with field trips and pizza parties. If my brother was born in the first half of the nineteenth century—his mental illness undiagnosed and untreated he might have been incarcerated, handcuffed and placed in a dark cell lit only when visitors passed. Early United States prisons charged admission from the public to see the mentally ill.
If my brother was born after Dorothea Dix’s massive mental health campaign in the 1840s, he might have been placed in a state mental hospital, and this would have been the most humane and positive option. Newly built American asylums offered clean spaces, medical and social attention beyond families, outside homes. By the end of the 1800s, hospitals were no longer humane or positive. Dix’s death coincided with large waves of Eastern European immigration and the Eugenics movement’s anti-disability zeitgeist. In the first decades of the 1900s, states legalized sterilization of people with mental disabilities. American asylums—overcrowded, under-resourced, highly stigmatized—looked once more like prisons.
In the 1920s, Joe may have been subject to hours of psychoanalysis, helping pioneer the field of contemporary psychology. In the 1930s these talking sessions turned into medical surgeries—my brother would have received electro-shock therapies, administered to his brain again and again to induce seizures, while his body stayed strapped to a hospital bed.
With the election of the first disabled president, Franklin Delano Roosevelt, and an exodus of able bodied men to Europe during World War II, Joe might have been accepted in the workforce for the first time in the 1940s. Combined with the return of many physically disabled veterans to the United States in the 1950s, Joe would have become more accepted by mainstream society.
In the 1960s and 70s, inspired by the Civil Rights Movement, people with disabilities led marches, levied court cases, and advocated for their legal and social inclusion throughout. The Disability Rights Movement culminated in the Individuals with Disabilities Act of 1975. The act federally mandated the provision of meaningful, free public education for children with disabilities, and fueled the Independent Living Movement, who advocated for adult services post-high school graduation. Thus, forty years ago, Joe might have been able to attend Chapel Haven.
But even today, programs like Chapel Haven are not prevalent. According to a developmental disability newspaper, Disability Scoop, only 17 percent of young adults (age 21-25) on the autism spectrum live independently. About one third of adults in the same age group with other mental disabilities, like intellectual development disorder or Down Syndrome, live outside their parents’ homes. The 1980s conservative backlash on the social movements of the ‘60s and ‘70s relegated mental health care to state legislatures, where funds diminished dramatically. Chapel Haven is funded primarily through private tuition.
In the absence of affordable social programs, state and federal prisons increasingly house people with mental illnesses and disabilities. In 2005, the US Department of Justice reported that more than half of all people incarcerated in local, state, and federal prisons had mental health problems. Al Jazeera stated in 2014 that US prisons house 10 times the amount of people with mental illnesses than state hospitals.
Catherine Sullivan-DeCarlo, Vice President of Admissions and Marketing for Chapel Haven, works to recruit families for its programs. According to DeCarlo, the most important factor for admission to Chapel Haven is family and participant motivation. As an adult program, she says, “no one is going to drag you out of bed.” DeCarlo also looks for whether or not the individual falls within the expertise of the organization—adults with social or developmental disorders—and tries to be as transparent as possible with parents about what Chapel Haven can and cannot offer their children. DeCarlo says, “what we don’t want to be is a disappointment to anyone. Because for parents of people with disabilities, there are a lot of disappointments.”
DeCarlo compares entry to Chapel Haven to the college application process. “There are a lot of programs, so it’s hard for parents to find the programs and know their quality. We might refer them other places, because we want people to do as thorough a search as they would for their college student.” Like college, Chapel Haven functions as a bridge from the structure of high school to independent navigation of the adult world. 85 percent of its residents do not return home after graduation.
Also like college, Chapel Haven is not free. My mom tells me, “I don't think it’s that difficult to get into the program because it’s very expensive. They take 15 people each year but Joe’s year there was only 10 or 12. It’s not like there is a waiting list, even though there are a lot of people who need this service.” She remarks, “It costs $60,000 a year. That’s more expensive than college.”
“The program’s very expensive,” my mother repeats for the third time in our phone interview. “But, for us, there weren't a lot of options for Joe.”
As I drive to Dunkin' Donuts, Joe chatters away about his friends and the nicknames they’ve given each other. He tells me a story of a party he threw in his apartment, pausing several times to stop laughing long enough to finish his sentences. When we park, Joe looks both ways before exiting. He failed his “street safety” test the first time and now occasionally stops and lifts his head when we walk downtown together, saying “I’m supposed to look up!”
In our interview, my mother describes in detail how Joe goes grocery shopping for himself. How he makes a list, finds the items in the store, scans them himself and pays with his allotted $45 budget. How he wheels his laundry to the laundromat, washes it, waits for it to dry, and wheels it back—actions both small and unimaginable for anyone in our family two years ago. For my mom, the best part about Chapel Haven is not the life-skills, or the job training, or the absence of a TV blaring in our family room while she cooks dinner. “My favorite part,” she says, “is all the texts I get that say, ‘today was awesome’ or ‘this trip was awesome.’ He gets there and he’s big man on campus, he’s gotta say hi to everybody. He just has friends there. He's happy. His happiness has gone from 0 to 1000.”
I ask Joe what his favorite part of Chapel Haven has been. He tells me immediately, “getting yelled at,” referencing the parties and the nick-name stories. Then he gets serious: “No no. No, my friends and my roommate. They’re nice. We’re having a dinner party on Friday. We’re going to the Yale game on Saturday. I’m going to Dunkin' Donuts, too.”