One afternoon in Lexington, Aloke Roy and his parents watched a dancer adorned with gold jewelry perform Bharatanatyam, a classical South Indian dance. Aloke, 23, enjoys attending these shows whenever he can. He is fascinated by the bright colors and the way the dance tells stories.
Aloke has severe autism and multiple developmental disabilities. His mother, Mona, says experiences like the Bharatanatyam performance are important to him because he has regressed over the past year. Since he was 22 and can no longer attend school, he has lived in a residential home nearby in Burlington. His mother says he has lost his progress and developed challenging new behaviors.
“He really needed to go to school,” she said. “And now he just doesn’t have it.”
In Massachusetts, young people with autism rely on their public school district for education, vocational training, job preparation, and life skills training. But after age 22, school support ends, and those who need high levels of support must rely on state services. Advocates say there aren’t enough staff for the state’s group homes and day programs, and that’s why the system is failing young adults like Aloke. That puts a huge burden on families and caregivers, who face long waits for fewer options. Some decide it’s best to fill the gap themselves by quitting their jobs to stay home or paying for service workers out of their own pockets.
“Aloke’s story is typical of so many children who don’t get the support they need to cope in real life,” Mona said. “He fell off a cliff.”
A systemic failure
Maura Sullivan, recently named CEO of The Arc of Massachusetts, knows the challenges well as both an activist and a mother: She has two sons with autism, one of whom is just out of school age.
“When they turn 22, school funding stops. And that’s why we often talk about ‘the cliff,’ where you enter funding that is actually based on the adult social safety net,” Sullivan said.
Families rely on a combination of services from the Department of Developmental Services, MassHealth and other agencies funded each year through the state budget.
Sullivan says state leaders have offered support in recent years, but the real problem now is a lack of workers. Advocates say low pay for social workers after the pandemic has led staff to move on to better-paying jobs in other fields, leaving thousands of adults with autism and other developmental disabilities without the help they need on a daily basis. Day programs offered in cities across the state provide adults with individualized daily support, as well as activities and training on independent living skills and, if needed, behavior therapy.
The number of young adults needing help has increased, Sullivan says. She estimates that about 1,500 students with severe autism and intellectual or developmental disabilities will leave the school system next year and seek adult help through the state. Just a decade ago, that number was about 700.
The state is working to address the workforce problem. It has invested in care programs, increased wages – from $16 to about $20 an hour – and launched assistance programs to recruit new workers. But activists like Sullivan say that’s still not enough to attract and retain workers amid rising living costs.
Families face an “abrupt” transition
Before his 22nd birthday, Aloke was accepted into a residential program at the May Institute in Randolph, a school for students with intellectual and developmental disabilities, where he thrived and worked toward his academic goals in social studies and math. He also had a job putting together packages for an insurance company. But that job was far from the family’s home in Lexington — about an hour’s drive each way — and difficult to get to during the pandemic.
Aloke turned 22 last February and left school, so they needed to find a group home for him and a day program to replace school. They found a group home in nearby Burlington where he lives with other adults with intellectual and developmental disabilities and receives 24-hour care from staff. But his family couldn’t find a day program until June. To bridge the gap, his mother stopped working and his family hired private help. But that wasn’t sustainable.
Now the staff at the group home takes him to the day program in Watertown. At least it’s a safe place for Aloke to go every day. but Mona wishes her son would get more attention there. She says the ratio of students to teachers at school is 2:1 or even 1:1. In Watertown’s day program, it’s about 6:1. She describes Aloke’s daily life as “listless,” lacking stimulation and enriching activities. It’s been difficult to get him important behavioral therapy.
“He’s sitting in a room. He has no academic goals anymore,” she said. “He’s fallen so far behind, I just can’t believe it.”
Aloke has developed new behavioral problems, such as tearing and chewing his clothes and removing his seatbelt in the car. His speech skills have declined. His family is considering medical interventions to address the problems and has considered putting him on antidepressants.
They always hoped to take him to Disney World, but now Mona isn’t sure if they can.
“Even though we love him so much, we worry that if we don’t find a way to change this, he will no longer be able to participate in family activities – and that is really heartbreaking,” she said.
Some families are hesitant to place their adult child in a residential home for fear of neglect. However, Mona says that the staff at Aloke’s residential home care for the children and do their best despite being understaffed.
The family chose the Burlington residential home so they could see Aloke more easily than when he lived in Randolph. They also realized he had become isolated from his cultural identity. Since moving to the residential home, Aloke missed Indian food, Bollywood music and Indian dancing. Now they can pick him up and take him to events like the dance show.
“We realized that there was one thing he was missing in particular while he was away: he had no access to his culture and his identity,” she said.
“Even though we love him so much, we worry that if we don’t find a way to change this, he will no longer be able to participate in family activities – and that is truly heartbreaking.”
-Mona Roy
Mona knows her family is privileged to have insurance and the resources to navigate the system, but it’s still challenging and she says it’s hard to think about a plan for the future.
“I don’t know if I have the physical stamina and health to handle him at this age and at this stage of life,” she said. “I can’t even think about it too much because if I do, it’s just devastating to think that we’re not going to make it… we don’t even have a good plan.”
A long transition
Even for families with less severe needs who seek assistance, the transition after age 22 can be daunting.
Melrose resident Alaine Breen’s son Ryan was 4 when he was diagnosed with autism. She remembers feeling “thrown to the wolves” as she began navigating the school system, which forced her to quickly become an expert and advocate. It took some time, but eventually she was “well versed” and understood the education system.
Then Ryan graduated from high school and turned 22. “I immediately felt transported back to when he was four years old,” she said.
To access adult services, families must have a
Transfer to the state as early as two years before their 22nd birthday or high school graduation. A DDS transition coordinator works with each family to create a plan. The DDS transition guide encourages families to begin planning for the transition at age 14, knowing that services may be understaffed. Some families don’t find one until the last minute. Although Alaine experienced a relatively smooth transition for Ryan from Melrose Public Schools, she still found the process to be turbulent.
“The question then really is: Who do I call? Where do I go? … You’re back where you started and you literally don’t know anything anymore,” she said.
For now, Alaine is quite happy. Ryan is participating in the two-year Threshold program at Lesley University, where students with intellectual and developmental disabilities live in residential homes and learn independent living skills such as time management and budgeting. Ryan is “thriving.” He spends time with friends and has joined the college’s golf team. He is learning how to use the MBTA and hopes to get a job after completing the program.
One recent morning at home, Ryan was checking his email when his mother asked him how he felt about the coming year.
“I like the program,” he said. “Good, I feel good.”
Meghan Smith
GBH News
A look into the future
Abby Parrilla, CEO of The Arc of the South Shore, says accommodations are another challenge.
“In talking to caregivers, I’ve found that there simply isn’t enough housing, especially for this younger population … who need residential care where time, attention and expertise are available to address their unique needs,” Parrilla said.
That’s why they’re planning to build a group smart home specifically designed for people in the autism community aged 22 and over. It’s set to open in Braintree in September 2025. They hope to build more buildings in the coming years.
Parrilla hopes the initiative will help ease parents’ fears.
“When parents reach a certain age, they worry, ‘OK, what will happen to my child when I’m gone?’ That’s a burden for any parent, but it’s a particularly big burden for parents with an autistic or mentally disabled child,” she said. “So we can answer that call from parents and give them that reassurance.”
Back in Lexington, during the dance break, Aloke greeted Jayshree Rajamani, the dance instructor who had invited him to come to the performance after hearing about his difficult gender reassignment surgery. Aloke held her hands and they took a photo together.
She said it was a joy to watch Aloke perform and inspired her plan to one day start a program for adults with disabilities that would enable them to participate in Indian classical dance.
“If I can make a human child happy through my dance, then I am happy to do it.”
