When Cheryl Sakho’s son, Justin, began receiving crisis intervention services through YAI’s NY START/CSIDD program, it didn’t just provide support for him; it gave her something she hadn’t felt in years: a break she could genuinely rest into.
For families caring for adults with intellectual and developmental disabilities (I/DD) and complex behavioral needs, respite is both essential and increasingly hard to access. National data shows that while nearly 40% of caregivers say respite care would be helpful, only about 13–14% actually receive it, pointing to a significant gap in available services. For Sakho, that gap was all too real.
“If he wasn’t going [to START], he’d probably have to go to a group home,” Sakho said of her 24-year-old son who has autism and uses limited words to communicate.
NY START—Systemic, Therapeutic, Assessment, Resources, and Treatment—is a nationally recognized program that supports people with I/DD who also experience mental health challenges. A key part of its approach is pairing therapeutic care with respite, giving caregivers a much-needed break while ensuring their loved ones continue to receive structured support.
At its newly opened intensive four-bed resource center in Kingston, New York, people like Justin receive short-term, goal-oriented care focused on building skills, managing behaviors, and preventing crises while their caregivers gain time to recharge.
“It’s not like a general respite where they just come and get a break and go home,” said Jeffrey Greenberg, Therapeutic Director of the Kingston site. “Everything that’s worked on here gets communicated back to the family in hopes that there’s continuity of care.”
The Kingston center, which opened just last month, welcomed its first guest—Justin—shortly after opening. Long-term, the center aims to accept emergency stays, serving as an alternative to hospitalization or police involvement for people in acute crisis.
That combination of respite and skill-building is especially critical as families age alongside their children. Research shows a sharp decline in formal respite services as people transition into adulthood. Access falls from 8% during adolescence to just 1.4% by age 22, leaving families with fewer supports at a time when their needs remain high.
For Justin, that has meant learning practical skills and developing ways to manage overwhelming situations. When he becomes overstimulated, particularly by loud noise, he folds his earlobes over his ears, a signal staff quickly learned to recognize.
“That’s his way of communicating that the environment is too loud,” Greenberg explained. “It was incredible to see him already using that strategy.”
Staff then offer alternatives, such as noise-canceling headphones or access to a sensory room, helping Justin regulate before challenging behaviors escalate.
In a short span of time, staff have also seen growth in Justin’s independence. During his first stay, he observed a staff member make his bed. Just 10 days later, he returned and was able to do it himself.
“He already learned how to properly wash and dry his hands and make his bed independently,” Greenberg said.
He’s also taken pride in helping prepare meals, like cracking eggs for waffles, and engaging in daily routines that build confidence.
For Sakho, the benefits extend beyond Justin’s progress, they’re deeply personal. Managing daily life at home can be overwhelming. Justin’s behaviors, including meltdowns, have been part of their routine for years. Sakho is also caring for her younger son, who also has autism, and works as a caregiver outside the home.
“It’s very stressful,” she said. “You have to have a sense of humor because if not, forget it.”
The time Justin spends at the resource center, typically a few days at a time, once or twice a month, gives her a rare opportunity to reset.
“I can think and do certain things on my own,” she said. “Maybe clean up, maybe rest, or just do something for myself.”
That kind of break isn’t just helpful, it’s necessary. Caregivers who lack respite face higher risks of burnout, stress, and health challenges. “A lot of parents don’t even know these services exist,” Sakho said. “They’re so focused on their child…they don’t always take in the information.”
NY START also trains community partners, including first responders, to better support people with I/DD during crises. But for families, the program’s real impact is felt at home.
“For so long, it’s just been me,” Sakho said. “You just keep going because you have to.”
Now, she has a place where her son can go not just to be cared for, but to grow while she gets a moment to breathe, knowing he’s safe and supported.
“When Justin leaves for the resource center these days, he doesn’t even look back to say bye,” she said, smiling. “He loves it there.”