AUGUSTA, Maine — It's a proposal that would build a new system of services for one of Maine's most vulnerable populations.
A Path for ME, Home and Community-Based Services Lifespan Project, would provide more comprehensive services to people with intellectual and developmental disabilities starting at age 14, to help with the transition into adulthood.
The legislation, LD 659, is expected to eliminate yearslong waitlists for critical services, but some parents fear it will also make much-needed programs, like group homes, less available.
Roseanna Berlanger is a board member of Speaking Up For Us, a group run by adults with developmental disabilities.
Testifying before the legislature's Health and Human Services Committee earlier this week, Berlanger said revamping the system is needed to ensure others don't lose services like she did before she turned 18.
"I lost my services for a good four years. I don't want to see other people go through that," Berlanger explained. "Starting at age 14 will definitely help these individuals with transitioning to adulthood."
Right now, families of special needs children have to apply for different waivers for home and community services, primarily paid for by federal Medicaid dollars, based on their needs.
The proposed bill, also known as the lifespan waiver, would enroll children as young as 14, eliminating waivers and wait for lists across their lifespan.
"As they become adults, lifespan supports can change without individuals having to move to a different program, later in life supports can change again," Betsy Hopkins, the associate director of DHHS's Office of Aging and Disability Services, testified.
The lifespan program is expected to cost $5 million and is part of Maine Gov. Janet Mills' $84 million plan, investing state and federal dollars in behavioral health care services over a two-year period. If passed enrollment would begin in January 2025.
But a number of parents of adults with disabilities have said that, while the legislation is a good first step, there are few details about how current services will be eliminated or redesigned. Seventy-five groups home have closed across Maine amid low Medicaid reimbursement rates and staff shortages.
Debbie Dionne's 43-year-old daughter Kate lives a group home in Brunswick, where the staff helps her live independently. She is worried as group homes disappear that they won't be replaced under the proposed restructuring.
"I have never been so fearful of the future of all Mainers with high support needs like my daughter. She is counting on me to make sure that her home and independent life is not taken away from her," Dionne testified.
Cullen Ryan, the executive director of Community Housing of Maine and the father of a 26-year-old son with intellectual and developmental disabilities, urged the committee to require DHHS to engage in the rulemaking process. That would mandate legislative approval so the public can have a say in developing the lifespan program.
"There are some good ideas here, but the devil is in the details, this must be looked at very carefully," Ryan explained. Issues that could impact a critical system of care are expected to be hashed out in a work session expected to take place in the next few weeks.
People currently on wait lists for Section-21 and Section-29 services or those who are providing support can comment about the proposed Path For ME program. The survey is open for comments until 5 p.m. April 7. If you prefer to talk to someone to conduct the survey, you can call 800-262-2232.