As of Sept. 4, when Nicole McCoomb's disabled daughter, Madison, turns 21, she will be left with no services from the state after she fell through a loophole and a case manager "didn't do her job." McCoomb is desperate and reaching out to Gov. Janet Mills and state officials. Credit: Dem Cram | Portsmouth Herald

SOUTH BERWICK, Maine — Born developmentally disabled, Madison McCoomb has been in the state system since she was 9 months old. But next month, because a case manager allegedly dropped the ball, Madison’s 21st birthday will mark a new chapter of uncertainty.

Madison was supposed to be placed on wait lists for Section 21 and 29 essential MaineCare services, or “waiver” programs, but despite a case manager’s assurance that she’d done her job, she didn’t, as her agency even admitted. Nicole McCoomb, Madison’s mother, is beside herself. The single mother, who owns a cafe employing developmentally-disabled young people, named after Madison, said this is “devastating” for her family.

Now, when Madison turns 21 on Sept. 4, she’s slated to join the bottom of the state’s wait list for support services, rather than assume her rightful place in line, or at least where her family had thought she had been. Nicole filed a first grievance with the Maine Department of Health and Human Services Office of Disability and Aging Services, asking for her daughter to be “fast tracked,” but it was denied. She’s since persisted with a second grievance, and obtained a lawyer out of Kittery. She has an upcoming hearing with the state, where a hearing officer will ultimately send a recommended decision to the commissioner of DHHS.

Section 21 and 29 of MaineCare, the state’s Medicaid program, cover services such as day programs, work opportunities and housing for adults with intellectual disabilities or autism spectrum disorders.

When developmentally disabled youth turn 18, they began a transition process to adulthood with the state, which requires them to be placed on wait lists for support services when they turn 21. The McCoombs received a case manager at Pathways, the largest provider in the state of home-based behavioral health treatment services to children and families, particularly those with autism spectrum disorders.

This year, Nicole received a phone call from a Pathways supervisor stating their case manager had left the company. After some digging, it was discovered she had filled out the paperwork for the wait lists, but never filed them. As a result, Madison wasn’t in queue to receive adult case management services from the state.

In a letter to Nicole dated July 25, a Pathways employee wrote there was “no further evidence that these referrals [for wait list services] were actually completed.” The case manager was disciplined, the letter also stated.

However, in response to Nicole’s initial grievance, Office of Disability and Aging Services Program Administrator Brian McKnight wrote, “It is most unfortunate that [said employee] did not submit Ms. McCoomb’s applications for Section 21 and Section 29 waiver services,” but then denied the grievance.

“The state has failed us,” Nicole said. “No one will take responsibility for this.”

As of May 2019, there were 1,581 people on the Section 21 wait list, and 183 on the Section 29 wait list. Since 2008, the wait list numbers for Section 21 have grown exponentially, with 2018 seeing the highest numbers yet.

Jackie Farwell, a spokeswoman for DHHS, said in a statement, “The number of people needing these critical services has exceeded the available funding for many years. The department recognizes this need and has begun to address it by including funding in the biennial budget to take 167 individuals off the Section 21 wait list and connect them with services, and to establish a dedicated crisis intake line to prevent and de-escalate crises by using specially trained workers. We are also studying the adequacy of MaineCare reimbursement rates to providers who serve adults with intellectual or developmental disabilities, autism and/or brain injury, and will report our findings to the Legislature.”

Madison requires 24/7 care and cannot be left alone. While the family knew they would still have to wait for services, Nicole said it’s almost unbearable to think her daughter is now at the bottom of the lists, despite being in the system for 20 years. On Sept. 4, they’ll be left with only 20 hours of in-home support a week.

“What do parents do? I’m a single mom,” Nicole said. “How do I run a business and take care of her? No one seems to want to help us. I can’t afford to pay out of pocket for a program because it’s stupid expensive, nor can I afford or even find someone to be with Madi during the week.”

Following the recent departure of her chef at Madison’s Cafe, located in downtown South Berwick, Nicole is currently doing all the cooking herself.

Nicole said she’s reached out to Gov. Janet Mills, state representatives and several disability rights organizations. So far she’s come up empty-handed.

“It’s frustration, aggravation, not knowing where we’re gonna go, what we’re going to do,” Nicole said. “We don’t know how we’re going to take care of Madison. That’s where the anxiety sets in.”

In a statement, Leina Cortese, director of quality assurance and improvement for Pathways, said, “It is our policy to work with all families during the transition from children’s services to adult services. We cannot and do not discuss specific matters about individual clients as their confidentiality and privacy is of paramount importance.”

“Because Madi has a disability, the state has control over what she can and can’t do,” Nicole said. “How messed up is that?”