Maine must fund waitlists for people with intellectual disabilities


On October 8, 2019, the Office of Aging and Disability Services (OADS) released their quarterly update regarding enrollment numbers for Section 21 and Section 29 programs. These are waiver programs that provide home and community-based services to individuals with intellectual and developmental disabilities — Maine’s most vulnerable citizens.  According to the OADS, Governor Mills’ first biennial budget provided funding for an additional 167 people in fiscal year 2020. 

Despite needing this assistance most, these individuals are often some of the last to receive services. While Mills’ budget provided some additional funding, there were still approximately 1,600 individuals waiting for Section 21 and 323 waiting for Section 29 services as of the 1st of October. Mills’ increases actually funded existing state law, which stipulates that 50 people be taken off the waitlists every month until at least 300 new members are added to Section 21. 

The state is currently spending approximately $317 million over the biennium to fund the Section 21 and 29 waiver programs. As of October, there were 3,186 individuals enrolled under Section 21 and 2,286 under Section 29. In order to fully fund and eliminate the waitlists, the state would need to allocate an additional $80 million annually to these programs.

Senator Rebecca Millett has introduced LR 2623, legislation to eliminate Sections 21 and 29 waitlists and provide services to these individuals. The bill was approved by Maine’s Legislative Council and will be considered when lawmakers reconvene in January. While this is a gesture of goodwill and probably made with the best intentions, the proposal should have been introduced and approved last session and included in the 2020-21 biennial budget. 

The state is projected to receive record revenues to fund state government in the 2020-21 biennium and beyond. Instead of using this revenue to eliminate the waitlists, the governor and lawmakers deemed it more pressing to expand Medicaid to able-bodied adults and neglect Maine’s truly needy. 

According to the Department of Health and Human Services, approximately 82 percent of the Medicaid expansion population are adults without children and the other 18 percent are parents and caretaker relatives. While proponents of expansion argue that this population is comprised of low-income Mainers looking for assistance, the individuals on Medicaid waitlists often have more severe needs that need to be immediately addressed. 

Earlier this year, Madison McCoomb was placed at the bottom of the waitlists for Section 21 and 29 services. McCoomb was born developmentally disabled and has been in the state system since she was 9 months old. Madison’s former case manager at Pathways, a provider for home-based behavioral health treatment services, neglected to file the paperwork necessary for her to be put in the state’s queue for services. Despite needing 24/7 care and not being able to be left alone, Madison was slated to be sent to the back of the line for these services when she turned 21 in September. 

This begs the question: Does the state truly need to put these individuals on waitlists? The answer is no — provided the state prioritizes these individuals before funding other pet projects and individuals who need state assistance less urgently. 

Lawmakers may have a chance to eliminate most, if not all, of the waitlists for Section 21 and 29 services, with a $74.6 million projected surplus by the end of fiscal year 2021, when they return to Augusta in January for the second session.


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