How the Mills Administration Plans to Clear Waitlists for People with Intellectual Disabilities

Clearing waitlists for adults with developmental disabilities seeking services in Maine could cost up to $80 million a year, but doing so within the current system is not the path the administration of Gov. Janet Mills wants to take amid a legislative push.

More than 2,000 people were on the state's four waitlists for adults with developmental disabilities as of last fall, according to the Maine Department of Health and Human Services. More than 95 percent of them are people with intellectual disabilities or autism. The state has struggled with waitlists for years, but the issue has come up again as they near record highs.

Jeanne Lambrew, Maine's health and human services commissioner, has said it would take up to $80 million annually to clear the waitlists, but the department is interested in a new type of program that is more flexible and moves away from a group-home model while hoping to provide services people need now.

Clearing one of the waitlists could be a short-term priority for the Mills administration. It could free up space on another, more expensive waitlist. Paul Saucier, the director of DHHS's Office of Aging and Disability Services, wrote in an op-ed in Monday's Portland Press Herald that Mills is pursuing funding to eliminate the Section 29 waitlist.

The waiver provides in-home services and work support, while Section 21 provides more wraparound services. It's also much cheaper. The member cost for Section 29 was just under $19,000 in 2015, compared with nearly $104,000 for Section 21 services, according to DHHS federal waiver requests. About two-thirds of the programs' costs are paid for by federal dollars, and two-thirds of the programs' costs are tied to support services.

The Section 29 waitlist has always been smaller than the Section 21 waitlist and did not exist from June 2015 to October 2018. It peaked in 2014 at 512, while the waitlist for Section 21 services peaked at 1,703 in May 2018 but has been growing over the past 11 years.

It may be a result of people preemptively signing children up as a way to reduce wait times before the services are needed. More than half of those on the Section 29 waitlist are on no other waitlists and reducing its numbers will probably mean reductions elsewhere.

There are efforts to reduce the state's waitlists permanently and to review how direct care workers are compensated. It won't happen all at once. Sen. Rebecca Millett, D-Cape Elizabeth, has proposed a bill aiming to reduce waitlists over time, make it a formal state policy to not have waitlists and to have adequate reimbursement rate for the associated workforce.

It would direct the state to make waitlist numbers public every month and the average time spent on waitlists. It would also require the state to project how many people will be on the waitlist over the next four years as a way to anticipate the cost of those services.

Millett said it's unrealistic to think the state would be able to eliminate the waitlists all at once. Even if it was able to get the money to fill the slots, the workforce does not exist to care for the population, she said, adding “the department literally cannot spend that money.”

It may not want to. Saucier said Monday night the department is considering pursuing more flexible service options allowing people to live more independently. Fully funding the current system would “cast it in concrete,” he said.

“Spending that $80 million on the system in its fundamental form … is not the most effective expenditure of money and does not support the wants of those who its intended to help,” he told a legislative panel Monday. Saucier said the state is looking at creating a “life span” waiver that would provide a continuum of care over a person's life.

About 40 percent of the state's reimbursement rates have no schedule for review, said Michelle Probert, MaineCare services director, at a recent legislative hearing. Most rate increases have come from legislators with little reasoning as to why they were seeking that increase, she said.

The state is seeking a vendor to do a review of its reimbursement rates to be completed by November. The review won't just help the department stabilize its rate-setting procedure, Probert said, it's needed to renew the rates for the waitlist services.

In the meantime, families who want services for their children fear losing progress. Lisa Keegan of Fort Fairfield, whose daughter, Darby, has Down syndrome, was one of several parents who testified before the panel Monday night about their fears that their children would backslide if they don't get the care they need. Many testified that their children would succeed in school, only to regress without additional support once they age out and hit waitlists.

Lisa Keegan spoke about the pressures of having to care for her child, which makes it difficult to work. She told the panel she did not want all of Darby's friends to be “paid friends” and “we need community services to do that.”

“The anxiety and the depression that comes from not having a life. I don't want that for her,” Keegan said.

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