On a recent afternoon in Lexington, Aloke Roy and his parents were thrilled to watch a dancer, adorned in gold jewelry, perform bharatanatyam, a classical South Indian dance. Aloke, 23, enjoys attending these shows whenever he can, captivated by the bright colors and the storytelling conveyed through dance. For Aloke, it’s an experience that brings joy and a sense of connection to the cultural traditions of his heritage.
Aloke has severe autism and multiple developmental disabilities. His mom, Mona, says that experiences like the bharatanatyam performance are important because, in the past year, Aloke has experienced significant regression. Since turning 22, Aloke aged out of the school system and now lives in a group home in Burlington, which has meant that many of the supports and services he once had access to have become harder to come by. Mona explains that Aloke has lost much of the progress he had made over the years and has developed new, challenging behaviors as a result.
“He desperately needed school,” Mona said. “And now he just doesn’t have it.”
The transition for young adults with autism is especially difficult, as once they turn 22, they no longer have access to public school programs, which were once a source of academic, vocational, and social support. After this age, young adults with autism are expected to rely on state services, but these programs are often underfunded and understaffed, leaving families and caregivers in a challenging position. In Massachusetts, advocates have long raised concerns about this gap in services and the strain it places on families who are forced to either wait for state services or go without.
“Aloke’s story is emblematic of so many kids, where they don’t get the support they need to be able to function in the real world,” Mona said. “He fell off a cliff.”
A Systemic Failure
Maura Sullivan, CEO of The Arc of Massachusetts, knows this challenge firsthand. Not only is she an advocate, but she is also the mother of two sons with autism, one of whom just aged out of the school system. She explains how families with young adults with autism are faced with a sudden and jarring loss of services when their children turn 22.
“When they turn 22, the school system funding goes away. And that’s why we often refer to this as ‘the cliff,’ where you step off into funding that’s really based on the adult services safety net,” Sullivan said.
After the school system’s support ends, families must seek services from agencies such as the Department of Developmental Services (DDS) and MassHealth. Unfortunately, these services often fall short due to a workforce shortage exacerbated by low pay and high turnover in human service jobs. Advocates argue that these factors contribute to the failure of the system to meet the growing need for support among young adults with autism.
The gap in services is a growing concern as the number of young adults needing care increases. Sullivan notes that in the coming year, about 1,500 students with severe autism and intellectual or developmental disabilities will leave the school system and require adult services. Just a decade ago, the number was closer to 700. While the state has taken steps to address the issue, such as increasing pay for workers and launching recruitment efforts, Sullivan says it remains insufficient to meet the need.
The Strain of Transition
Before turning 22, Aloke attended a residential program at the May Institute in Randolph, a school for students with intellectual and developmental disabilities. There, he thrived academically, working on goals in social studies and math. He also held a job assembling packets for an insurance company. However, the school was far from his family’s home, and the pandemic made it even harder to visit.
When Aloke turned 22, his family faced a difficult transition. They had to find a group home for him to live in and a day program to provide the support he needed. They eventually found a group home in Burlington, but it took months to find a day program for Aloke. During this time, Mona stopped working and her family hired private workers to provide support, though it became increasingly difficult to maintain.
Now, Aloke’s day program is located in Watertown, but Mona wishes it offered more individualized care. The student-to-staff ratio is much higher than what Aloke was accustomed to in school. In contrast to the 2-to-1 or even 1-to-1 ratio in the residential program, the Watertown program has a ratio of about 6-to-1. As a result, Mona describes Aloke’s daily routine as “lusterless,” lacking stimulation and enriching activities that are crucial for his development.
“He sits in a room. He doesn’t have any academic goals anymore,” she said. “He’s regressed so much, I just can’t even believe it.”
Aloke has developed new behavioral challenges, such as ripping and chewing his clothes, and even removing his seatbelt in the car. His verbal skills have declined, and his family is now considering medical interventions, including the possibility of antidepressants. They had always hoped to take him to Disney World, but Mona now fears that these family activities might not be possible if they cannot turn things around.
“Despite how much we love him, we worry that if we don’t figure out a way to turn it around, he won’t be able to be part of any more family activities — and that’s really heartbreaking,” she said.
Despite the challenges, Mona acknowledges that the staff at Aloke’s group home is caring, even though they too are under strain from being understaffed. When the family made the difficult decision to place Aloke in the group home, they chose one close to their home in Burlington so they could maintain more involvement in his life than when he lived in Randolph.
Aloke had started to become disconnected from his cultural identity since moving to the group home. He missed Indian food, Bollywood music, and traditional dance. Now that he is closer to home, his family is able to take him to cultural events like the bharatanatyam dance performance, which allows him to reconnect with his heritage.
“We realized that the one thing he couldn’t do when he was far away was he couldn’t access his culture and his identity,” Mona said.
Looking to the Future
Mona’s family is lucky to have resources, such as insurance, to navigate the complex and often overwhelming system of services for young adults with autism. Yet, she still finds it difficult to imagine what the future will look like for Aloke as he ages. The uncertainty of long-term care and services weighs heavily on her.
“I don’t know that I have the physical stamina and the health at this age and stage of my life to manage him,” she said. “I can’t even think too much, because if I do, it’s just soul-crushing to think that we won’t … we don’t even have a good plan.”
Other families with less severe needs face similarly difficult transitions. For instance, Alaine Breen’s son Ryan, diagnosed with autism at age 4, graduated from high school and turned 22. Alaine, who had learned to navigate the educational system, now finds herself learning to navigate adult services. Ryan is now enrolled in a two-year program at Lesley University, where he is thriving in a supportive environment that offers independent living skills training.
“Ryan is thriving,” Alaine said. “He’s learning how to use the MBTA and hopes to get a job when the program is done.”
Abby Parrilla, CEO of The Arc of the South Shore, highlights the challenge of finding housing for young adults with autism and developmental disabilities. Many families are looking for group homes that can provide the time, attention, and expertise needed to address the unique needs of their children. Parrilla is hopeful about a new initiative that will open a group home specifically designed for individuals with autism in Braintree in 2025, with plans for more in the future.
“When parents get to a certain age, you start worrying about, ‘OK, when I’m not here, what happens to my child?’” Parrilla said. “It is a burden on all parents, but it is a major burden on parents with a child with autism or intellectual and developmental disabilities.”
In Lexington, during an intermission at the dance show, Aloke had the chance to greet Jayshree Rajamani, the dance teacher who had invited him to the performance. Aloke smiled and posed for a picture with her, a moment of connection and joy amidst a challenging time. Rajamani was inspired by Aloke’s story and is now planning to start a program for adults with disabilities to participate in Indian classical dance.
“If I can make one child of one human happy through my dance, I’m happy to do that,” Rajamani said.
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