CARMEL, Maine — Michael Levasseur is 19 years old and has a high school diploma. He has held a part-time job stocking shelves at a local supermarket and volunteered at the Maine Discovery Museum in Bangor, his parents, Cynthia and Paul Levasseur, said.
He is also autistic and requires supervision.
Like most young men his age, Michael says he wants to have a job, preferably at a home improvement store such as Lowe’s or Home Depot, and live as independently as he can.
But under Maine’s assistance programs, many of which have chronic funding problems, Michael can’t access the services he needs, such as a job coach or in-home support. Consequently, the Levasseurs this week packed up their belongings at their home in Carmel to move to Virginia, where they can find such help.
“We left New Hampshire about 17 years ago because there weren’t a whole lot of services for kids with autism. It’s been OK until he aged out of children’s services and that’s where it started to go drastically downhill,” Cynthia said.
The Levasseurs are not alone. Hundreds of Maine adults with intellectual disabilities and autism linger on waitlists for services they’re eligible for through Medicaid, the health insurance program for low-income residents. Some have waited years for the assistance, which the Maine Department of Health and Human Services agrees they’re owed but hasn’t found enough money to fully fund for seven years and counting.
Many fear the problem will only grow worse as more Maine children are diagnosed with autism. Last year, Maine’s Medicaid program covered nearly 6,100 individuals with the disorder — a 46 percent increase from five years ago, according to an April state report.
Waiting for independence
When Michael turned 18, he had the option of graduating on time, which he did, or staying in school for another two years, Cynthia said during a recent interview at the Lilac Lane home the family sold in anticipation of moving to Virginia.
“He could have stayed the extra two years but he really did not want to and we didn’t see the point,” Cynthia said. “He couldn’t participate on the [Bangor] High School swim team anymore because once you go beyond a fifth year, you can’t participate in varsity sports.”
During his school years, Michael required supervision. Once he graduated, the need increased. Cynthia said she had to give up at least two jobs in recent years because she needed to be home for Michael. That created financial difficulties for the family.
The Levasseurs first lived in Hampden, then moved to Bangor and then Glenburn and finally to Carmel, selling two houses along the way to downsize their mortgage.
While Paul Levasseur worked as a truck driver, Cynthia Levasseur worked a number of jobs, including a nearly five-year stint at Eastern Area Agency on Aging.
Her most recent job, which she started seven months ago, was with the state’s G.E.A.R. Parent Network as a regional parent support coordinator. The network, which offers advice and counseling for those dealing with children with behavioral health needs, is funded by DHHS, United Way and private donations. Levasseur said it was a perfect job because it offered her the opportunity to impart what she had learned about negotiating the complicated system of government bureaucracy “that is not very parent-friendly” to other parents and providers.
The Levasseurs were able to negotiate the system for years, and Michael received the services he needed. But children’s services are only available until an eligible person graduates from high school or turns 20, whichever comes first, she said.
Then a difficult situation often gets tougher.
In Maine, adults with autism and other intellectual disorders receive services through two MaineCare “sections.” Under an agreement between the state and the federal government, individuals in these programs forgo institutionalization in favor of group homes or assistance that helps them live with family or on their own.
The Section 21 program supports housing services, such as long-term group homes and supported apartments.
Section 29 is meant for families who care for adult children with disabilities at home, providing long-term job coaches, day programs and other support.
Both programs have long waitlists, which date to 2008.
According to the Maine Coalition for Housing and Quality Services, as of April 15, there were 1,099 people waiting for Section 21 services and another 146 waiting for Section 29 services. Of those, 141 people were on both waitlists and 531 individuals on the Section 21 waitlist are receiving services under Section 29.
Section 21 services are allotted based on a priority system, with residents in the most dire situations, such as those facing abuse and neglect, coming off the waitlist first. Section 29 services are first come, first served.
Michael is classified as a Level 3 under Section 21, the highest functioning of the three levels of classification and the last in line for services. He is able to cook for himself, use public transportation and has some money management and computer skills, his mother said. Levasseur said that means Michael never will be eligible for Section 21 services under the current system.
Michael got off the waiting list for Section 29 services in March because he was part of a class-action lawsuit brought against the state two years ago that the state settled in November.
The settlement forced the state to find the necessary funding to provide services owed to hundreds of adults with autism or other developmental disabilities.
The Section 21 program is much more costly for the state to administer, at more than $100,000 per person versus about $23,000 for Section 29.
Michael received access to a Section 29 day program as a result of the lawsuit. But the program is geared toward lower-functioning individuals and lacks the resources to provide individualized learning plans, Levasseur said.
The final straw for the Levasseurs was a project Michael brought home from the day program — a pre-made wooden picture frame on which he had placed stickers of superheroes and cats and dogs.
The couple wanted more for their son.
“We did not push so hard to get our son his high school diploma to spend his time only at the day program,” Cynthia said.
Along with the lack of funding, the structure of Maine’s system makes it nearly impossible for people with disabilities to achieve any degree of social or financial independence, she said.
“The state is forcing disabled individuals to rely on state aid,” Cynthia said.
The Levasseurs reached out to lawmakers with their plight, catching the attention of Gov. Paul LePage, who shared their story in his State of the State address in February 2014. The family met with LePage twice more after the speech, Cindy said.
The governor has highlighted the waitlists in his ongoing — and now stalled — battle with the Legislature over a new state budget.
LePage has proposed spending more than $46 million with a goal of providing services to all elderly and disabled residents on the waitlists over the next two years.
In the last biennial budget, lawmakers provided $9 million over two years to reduce the Section 21 and 29 waitlists. Hundreds of the most needy residents were offered services.
DHHS Commissioner Mary Mayhew said in a statement that the Levasseurs’ situation exemplifies why she and LePage want to see more Mainers with disabilities finally come off the waitlists.
“The concerns expressed by this family and many others who struggle to receive needed services for their loved ones who are severely disabled continues to demonstrate why Gov. LePage and I have been pressing lawmakers to prioritize significant funding for people with disabilities in the state budget currently under consideration,” she said. “But instead, many legislators would rather prioritize welfare for non-citizens.”
State spending to help poor and unemployed immigrants has emerged as a key sticking point in budget negotiations between Republicans and Democrats.
‘We’re not the only ones’
The Levasseurs say they’re frustrated that not all Maine lawmakers fully understand the inner workings of programs designed to support those with autism and similar conditions, and why it’s important to Maine families that they be adequately funded.
“I’m just astonished that lawmakers No. 1 don’t understand what they’re voting on and No. 2, you’ve got a thousand people — not even counting those on [Section 29] — that have no options right now,” Cynthia said.
While working for the G.E.A.R. Parent Network, Levasseur wrote a guide for parents facing the need to transition their adult children off children’s services to adult services in Maine.
“I didn’t want other parents to have to reinvent the wheel,” she said.
But Cynthia worries about the future for families like hers.
“[They’re] going to be forced onto state aid, they’re going to be forced to possibly give up their homes, they’re going to be forced to put their loved one into a nursing home. I mean, they just can’t leave their child home alone,” she said.
That is why the Levasseur family is moving to Virginia, where the couple’s other child, Ashley Levasseur, attends Liberty University. In addition, Cynthia Levasseur said, Michael may have a job waiting for him there at a major supermarket chain.
In Maine, the family couldn’t find an employer willing to give their son a chance, she said.
“We’re not the only ones leaving the state, unfortunately,” she said. “Just in the last week, I found out about six other families moving out of the state.”
BDN Health Editor Jackie Farwell contributed to this report.