For Cathy Dion of Greene, last week’s class-action lawsuit settlement with state health officials means her autistic son, Ben, will finally come off a waiting list for day treatment.

“He’s been on it since September 2012,” said Dion. Ben, now 20 years old, had received services through the public school system until June, but since then the Dions have been paying out of pocket for care.

“In the last six months we’ve spent the equivalent of about two years’ college tuition,” said Dion, the director of programs and administration at the Autism Society of Maine.

The Dions are among the hundreds of Maine families who will directly benefit from the settlement – completed Monday in Kennebec County Superior Court – which requires the state to provide MaineCare home-based services vouchers and day treatment or job support funding to about 1,000 people with autism and significant developmental disabilities.

Although MaineCare juvenile services are available until a person is 20 years old, families can sign up for the adult services as soon as their child turns 18, Dion said.

Knowing there was a backlog, she signed Ben up at 18, but they still fell into the gap after he graduated at 20 because of the waiting list. Not only did they have to pay out of pocket for care, but for the first two months they could only find services for three days a week. That meant Ben, who is nonverbal and needs close attention, went to work with Dion for two days each week.


“I did what any parent would do,” she said, noting that she was lucky she works at a place that would allow a worker to bring in a disabled child.

Families say the settlement, though limited, is critical for families who worry about what happens when they get to what’s called the services “cliff” – when a young person in need “ages out” of the public school system at age 20.

At the other end of the spectrum are aging parents who took care of their disabled children at home for decades, but are getting too old to do it themselves, or need a plan in place for when they themselves die.

The range of services offered under the two programs in question – known as a “comprehensive waiver” and a “support waiver” – is broad.

The home-based services benefit, or Section 21, is intended to help people stay out of institutionalized housing and remain in their family homes. It can include paying for ramps in a home, or speech therapy, or transportation and work support. The day habilitation benefit, or Section 29, is to support people during the day, mostly with independent living and help with employment. It can include payments for communication devices, job training, counseling, physical therapy or a wheelchair lift on a van.

The settlement covers all people already on waiting lists or who sign up by June 30, 2015, said Gerald Petruccelli, the Portland attorney for the plaintiffs.


“I think (the settlement) is very exciting news for folks who have been waiting a long time,” said Cullen Ryan of Buxton, who has an autistic son and is executive director of Community Housing of Maine, which provides housing for people with special needs.

As of late November, there were about 1,200 people on Maine Department of Health and Human Services waiting lists for Section 21 and Section 29 vouchers, and about 50 people have pending offers from the state.

When the lawsuit was filed in early 2013, many people had been on waiting lists for years, some since 2008. The DHHS said in response to the lawsuit that there was not enough money in the budget to cover those services, so they ended up being deferred.

The state’s share of the cost of providing services to the people affected by the settlement is expected to be about $7 million a year.

MaineCare is the state’s name for Medicaid, which provides medical services for low-income residents. Funding for the program is a blend of federal and state dollars.

Suellen Doggett, 67, of Waterboro said her 37-year-old son, Michael, has been on the home-based services waiting list for about five years. She and her husband have cared for him at home, and hope to continue, but they are getting older and are looking for assurances that there is a safety net in place for their son.


He has gone to state-funded day habilitation services since he was 21, but the hours have been cut to half-days in recent years.

Michael Doggett has a developmental disability caused by Williams disease, a genetic condition. He is very social and has done work but needs assistance, and operates at around the 12-year-old level, his mother said. He has worked through vocational rehabilitation programs and enjoyed that, but his work hours were cut. He now does unpaid volunteer work.

“All these cuts. It’s very discouraging,” said Suellen Doggett.

When asked what she would do when the state offered a voucher, she said she was unsure.

“I’m going to have to see what they say,” Doggett said. “I’m not just going to turn my son over to the state after all these years.”

Similarly, the Dions know their son would qualify for home-based services, but they are hoping to have him live at their home for as long as possible.


“We like having him here, but as he gets older I know he’s going to want something more. I’m just not ready for that yet,” Dion said. “As families, we try to take care of everything within our own family. But with autism, you have to reach out to extended family, and you just need support and that’s what I want to make sure is always there.”

Many families she works with through the Autism Society have already been caring for their children for decades and realize they will need additional help at some point. They don’t want assistance before they need it, but they can’t wait until there is a crisis, only to find out there’s a years-long waiting list.

“These are things families should think about now,” Dion said. “They need to know that when they need that state service in the future that it will be there.”

A DHHS spokesman said in a statement that the department had been continually working to reduce the waiting list.

“Governor LePage has allocated millions of dollars in additional financial support over the last three years to move more than 800 people with intellectual and developmental disabilities off of wait lists,” David Sorensen said in an email. “His efforts and those of the department to improve the services and supports for these vulnerable Mainers well preceded this lawsuit and will remain a significant focus.”

Dion said that even if the state waiting list is cleared, she’s worried about finding a service provider nearby, particularly if the state approves hundreds of vouchers in a short period.


“It could bog down the system,” she said, noting that she has already been researching service options near their home in Greene. “I don’t want to ship my son to some program in Portland. That’s not his community.

“So we’re still stuck,” she said. “It’s very difficult.”

Noel K. Gallagher can be contacted at 791-6387 or at:


CORRECTION: This story was updated at 3:20 p.m. on Dec. 1, 2014, to correct that the settlement covers home-based services, not housing vouchers that pay for room and board.

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