After years of talking about it, Maine’s health department is proposing to spend millions to clear a backlog for people with intellectual and developmental disabilities who need state services, and to change the way those services are delivered.

The changes, included in Gov. Janet Mills’ proposed $10.3 billion two-year budget plan, would represent a significant change for the programs that provide services for thousands of people with intellectual and developmental disabilities, and their families.

This story was originally published by The Maine Monitor, a nonprofit civic news organization. To get regular coverage from the Monitor, sign up for a free Monitor newsletter here.

The state currently provides residential housing and support services for people with disabilities through its Section 21 and 29 waiver programs. A waiver is the funding mechanism that allows people with disabilities to receive nursing-level care instead of being institutionalized. They are primarily paid for by federal Medicaid dollars.

 But those programs have historically faced waitlists, and people transitioning from school-provided services to adult services are often at risk of running into a service cliff, or losing that care as they transition. That can cause people to backslide developmentally and affect their ability to be independent in the long run.

Office of Aging and Disability Services data dating back to June 2008 shows the waitlist for Section 21 services — the highest level of support for people who need near-constant supervision to keep them safe — was at a record high of 2,028 people in September 2022, the latest information available. 

The Section 29 waitlist — more geared toward in-home care and work support — has been mostly declining since 2020 and stood at 218 people in September. 

However, the state data shows only 14 percent of people who qualify for Section 21 services and 4 percent of Section 29 qualifiers do not have some other level of service. 

The state wants to create a “lifespan” approach. The idea is to plan what services a person is likely to need throughout their life and make sure they have a funded slot in the program. Doing so could give Maine a better sense of when someone will need services before they become adults, which will allow for better planning and save money, proponents say. 

Implementing a lifespan waiver is projected to cost $5 million and is part of Mills’ $84 million plan using state and federal funds to invest in behavioral health over the next two years, according to the budget released Wednesday. Maine will need approval from the Center of Medicaid and Medicare Services before the program can begin.

The details of how the waiver will work need to be hashed out. While advocates say a lifespan waiver could greatly improve the administrative parts of accessing care, barriers to services like staffing shortages will still persist.

“The devil is going to be in the details,” said Rachel Dwyer, the associate director of the Maine Developmental Disabilities Council, which advocates for more communal support for people with developmental disabilities.

The Office of Aging and Disability Services anticipates it will begin enrolling people in the lifespan waiver program at the beginning of 2025, said Paul Saucier, the director of the Office of Aging and Disability Services. 

It will take several months of planning to determine what services are included in the waiver, Saucier said. Normally approval for a program from the Center of Medicaid and Medicare Services would take around 90 days, but the complexity of the lifespan waiver might mean it could take up to six months or a year, he said.

The goal is to get everyone new to the program a lifespan waiver once enrollment starts, Saucier said. If passed, the two-year budget would fund 540 slots in 2025. People who have Section 21 and 29 waivers do not need to leave those programs.

The budget also includes $34 million to knock down the Section 29 waitlist to zero and $3 million to provide more Section 21 slots on an emergency basis. There is $42 million set aside to provide cost-of-living increases for care providers, Saucier said.

Of those on the Section 21 waitlist for more intensive services, some two-thirds are already receiving Section 29 services. Saucier said it is unclear how many might actually need one service over another, or have been placed there by caretakers who want to make sure that option is eventually available. Having a lifespan waiver will give the department more clarity on what services someone will need in the future.

“It is about accommodating changing needs,” Saucier said. “Also, if there is a waiting list, it will be just one waiting list and we’ll know what that means.”

For Carrie Woodcock, the executive director of Maine Parent Federation, care for her child with a developmental disability was episodic and changed frequently throughout their schooling. It was so much work to keep up with her child’s case that she became fluent in how to fill out eligibility paperwork, she said.

Having a waiver will give parents a level of consistency and peace of mind because it could ensure their children get qualified for services before they age out of the public school system, where they are entitled to services under federal law until they are 21, she said. Most critically, keeping those services in place could reduce a person’s reliance on them in the future, allowing them to be more independent.

“It means more positive outcomes and more post-secondary opportunities,” Woodcock said.

Cullen Ryan, the executive director for the supportive housing service Community Housing of Maine, said the governor’s budget and the lifespan waiver plan is a good first step toward fixing the challenges around providing care for people with developmental and intellectual disabilities. 

But he was skeptical that the amount put toward reducing the Section 21 waitlist would be enough to sufficiently address the need. He also said more work is needed to increase Medicaid reimbursement rates for group home and community support providers to attract more workers, which would also cut waitlists down.

“Ultimately we need to get to a place where we can commit fully to meet the needs of people with intellectual disabilities,” he said.