Over the past decade, the number of students diagnosed with autism in Maine’s public schools has more than doubled. Many of those newly diagnosed kids aren’t even old enough to start kindergarten.
In response, Maine’s Child Development Services has implemented a new program specifically targeted to help the families of young children with autism. But high costs and few caregivers could put the program at risk.
Three days a week, Kris West enters a small house down a rural winding road in Canaan, just east of Skowhegan, and transforms it into a unique kind of special education classroom.
West is here from the state’s Child Development Services to support Michael, a 2-year-old boy who was diagnosed with autism about a year ago. His family didn’t want his last name used for privacy reasons.
Inside Michael’s house, West sits on the ground and the two piece together puzzles and sing songs. West says it’s all a way to gently expose Michael to a new social setting — and it’s fun.
“Fifteen years ago, it was sitting at a table. Telling a child, ‘Do this, do this, do this,’” West says. “Now it’s much more child-led. It’s fun. It’s fun for me. Fun for him.”
This session is part of a new program called Early Start Maine. It was developed by the state’s Child Development Services in partnership with the University of Maine’s Autism Institute for Education and Research.
The program is based on the Early Start Denver Model, which was actually developed in California. Maine adopted it statewide about 18 months ago due to the skyrocketing number of children diagnosed with autism, specifically kids like Michael, who are diagnosed at a very young age.
“Kids 0-3 really need that relationship, play-based model,” says Deborah Rooks-Ellis, the director of the Maine Autism Institute. “And the earlier you catch a child with a need, there is research to back up that they’ll need less services later in life. So it’s really important.”
Rooks-Ellis says what’s more important is that these kinds of services are being delivered in a child’s home, so families won’t have to travel to get them. And it also means that a parent can now learn development strategies directly from a provider and use those strategies to help their child 24-7.
“So our job is to help the caregivers learn the strategies, the skills, and help them embed them into their everyday routines,” says Roy Fowler, the early intervention technical advisor for Child Development Services. “So the intervention is happening at home, at breakfast. If the child wants orange juice, the parent implements strategies to help that child over breakfast, at the kitchen table.”
Michael’s mom, Justine, says her son still struggles with anger and finding ways to communicate with those around him. But she’s already seen the progress he’s made after just nine months.
“Then with [Early Start Maine], he started coming back,” she says. “Playing the games. Doing the social routines. He just started speaking a few weeks ago, which is great.”
Fowler says since the program went statewide a year and a half ago, the state is already seeing children with autism progress more quickly. But he says the program is also at a crucial tipping point — Maine is currently short on special education teachers, and it’s particularly tough to find enough teachers to work with younger kids.
“It’s very easy to get fried, to get burned out in this,” he says. “You’re working with one child very intensively for up to 15 hours a week.”
The other issue for the program, Fowler says, is cost. Children with autism need a lot of resources.
“If you think about it,” he says, “One full-time person can handle two, maybe three children at a time. On a case load. So you’re paying a full-time salary for services to three kids.”
That salary starts at only around $29,000. But multiply that by 15 or 20 staff members, and suddenly a program serving fewer than 50 students costs $700,000 or $800,000. Fowler says CDS can pay that. The issue, though, is that the agency has more than 1,200 other students it has to serve, too. More services to these kids means fewer resources for others.
“It’s more expensive than our other services. Significantly so,” Fowler says. “So we’re really looking at, how do we make this sustainable? And the big question there is the funding.”
But Fowler says there may be a solution. CDS is about to begin billing Early Start Maine services to MaineCare, the state’s version of Medicaid. That would shift these costs from the Department of Education to the Department of Health and Human Services.
“If MaineCare will pay for [the program], I think we have a future,” Fowler says. “I think it could be sustainable. We could even scale it up a bit. If we’re not successful in having MaineCare pay for it, I’m not sure the future of [Early Start Maine].”
But will MaineCare pay? Fowler is optimistic, as are officials at DHHS. Spokesperson Samantha Edwards says it’s MaineCare’s obligation to cover specific support services for young people with developmental disabilities, and Early Start Maine falls into that category.
Fowler says if the shift to MaineCare works out and the state can find enough caregivers, Early Start Maine could be a long-term solution for many young kids with autism — and their families.
