For parents of disabled children, MaineCare waitlists are a nightmarish prospect

When doctors discovered that Jeff and Kirsten Martin’s child would have serious medical complications, they urged her to terminate the pregnancy. When the Martins decided abortion was not an option, they began a lifelong journey of living with, loving, and caring for, their disabled daughter Emily.

“My daughter was born in 1997,” said Martin. “We knew there were going to be issues, but things turned out to be worse than we thought.”

Emily was born with dislocated hips, hydrocephalus, a condition more commonly known as water on the brain, and other brain abnormalities. She had a stroke when she was three weeks old, was fed through a tube until she was 6 years old, and has undergone more than 50 surgeries in her lifetime.

Before the Martins even left the hospital, they had signed Emily up for every social service for which she was eligible, including MaineCare, as Medicaid is called in Maine.

“She’s had MaineCare since the day she was born,” said Martin.  “We had really good private insurance, but traditional insurance doesn’t cover everything a special needs child requires,” she said. “Emily needed MaineCare.”

Emily’s comprehensive medical needs have been covered by the MaineCare system for her entire life. Although her parents are self-employed and do not meet the financial eligibility requirements, Emily is eligible for services through the Katie Beckett waiver program.

The Beckett waiver program is named after Katie Beckett, who was 3 years old when her situation inspired President Ronald Reagan to make landmark reforms to Medicaid. Prior to the creation of Beckett waivers, Medicaid would only pay for the care of individuals like Katie if they were institutionalized. In instances where family was willing to care for a disabled child at home, the system would not cover the costs. On Nov. 10, 1981, President Reagan held a press conference and denounced the practice as an example of cold bureaucracy.

Reagan’s actions spurred changes to Medicaid rules which let children like Beckett, whose parents made too much money to qualify for Medicaid, to qualify on their own as medically eligible. Those changes have allowed disabled children to grow up in homes, not hospitals, and helped their parents deal with extreme medical costs. But coverage with a Katie Beckett waiver ends when a child turns 18, and that’s the prospect the Martins will face shortly, as Emily, who is a currently a junior in high school, will soon become an adult.

“My daughter is aging out of the pediatric system,” said Martin. “She’s going to be entering the adult system.”

Emily will turn 18 next year and will become eligible to take a spot on a waiting list with the Department of Health and Human Services (DHHS) along with thousands of other Mainers. By law, she can remain in the public school system until she is 21 years old, allowing her to continue receiving much of the daily care she requires. But Emily’s parents fear she will get lost in the system once she graduates from high school.

“She’s not able to be alone, she can’t fend for herself at all,” said Martin. “I want to make sure that when she graduates from High School she can get the services she needs.”

A DHHS case manager will eventually determine what adult services waiver Emily is eligible for. But whether it’s the Section 21 Home and Community Based Wavier (“Comprehensive Waiver”) or the Section 29 Home and Community Based Waiver (“Support Waiver”), Emily will be in line behind hundreds, if not thousands, of individuals like her. Depending on the severity of her condition, she may be prioritized ahead of others, but the uncertainty is taking its toll on her parents.

The uncertainty of navigating a complex bureaucracy to obtain care for Emily is only exacerbated by a potential expansion of Medicaid eligibility to young, able-bodied adults currently under consideration in the Maine Legislature – an expansion that would further constrain the resources available to care for people like Emily.

“The scary thing about the Medicaid expansion is it’s going to take money away from these people,” said Martin. “They’re just not going to get the services they need.”

When the state cannot provide adequate care services to families like the Martins, the consequences are life-altering. Martin says that without adult Medicaid services she will likely have to quit her job so she can stay home and take care of her daughter, but many families are less fortunate than she. “I know families that have sold their house and bought a trailer, and one parent stays home,” said Martin. “The quality of life suffers and the child doesn’t get the care.”

Martin is frustrated with people who, she says, believe expanding Medicaid will not jeopardize Emily’s future care.

“People think there’s going to be this miraculous fix. They have this whole fantasy of ‘let’s raise taxes on the rich and everything’s going to be better,’” she said. “The DHHS budget has been a problem forever… We just keep making promises we can’t keep.”

Martin is aware that her family and others on the waitlists have become political footballs. While opponents of expanding Medicaid have emphasized the need to prioritize Maine’s most vulnerable citizens – the elderly and the intellectually and developmentally disabled – proponents of expansion have passively ignored the tradeoff between expansion and the waitlists. One of Maine’s liberal newspapers has, in the course of its advocacy for expansion, accused Gov. Paul LePage of using waitlisted individuals as political “weapons.”

“The governor is using the people whose names appear on waiting lists as a means to advance his ideological agenda, not to help them get the services they are waiting for,” the editors of the Portland Press Herald wrote on Sunday. “The governor and his allies should stop playing this cynical game and address the real issues regarding health care in Maine.” Partisan supporters of Medicaid expansion say funding of waitlists ought to not be part of the conversation. (The subtitle on the Press Herald editorial, for example, reads: “DHHS program waiting lists are not a legitimate part of the MaineCare expansion debate.”) But that opinion ignores the fundamental facts of DHHS’s financial situation.

In a world of limited resources, the department must set priorities. For Gov. Paul LePage and DHHS Commissioner Mary Mayhew, expanding Medicaid to more than 100,000 able-bodied young adults would make it all but impossible for the state to adequately fund care for waitlisted individuals. The needs of our most vulnerable citizens, they say, should be a higher priority than expanding eligibility to young, able-bodied adults.

According to DHHS, the state would need an additional $43.3 million dollars in annual General Fund allocations plus a federal matching contribution of $104.3 million to provide services to all waitlisted individuals. In the last biennial budget, the governor proposed $26 million in state and federal funding for the waitlist. Although the Democrat-controlled Legislature eventually rejected parts of his budget, they did enact the partial waitlist funding.

“The governor is committed to reducing these waitlists and re-prioritizing MaineCare,” DHHS Communications Director John Martins said. Going forward, the governor has vowed to commit $18 million in savings from aligning Maine with national Medicaid eligibility requirements to serving the waitlist population, said Martins.  “This will leverage additional federal funds of about $30 million,” he said.

“It is our position that we must prioritize services to our most vulnerable and that expansion to 100,000 able-bodied individuals will only further extend the waitlists,” said Martins.

For Kirsten Martin, the prospect of growing the Medicaid waitlists at a time when her young daughter will soon be on one is dreadful, and she sees in LePage and Mayhew two individuals who are committed to fixing the system for people like Emily.

“It’s scary – the unknown,” said Martin. “Right now she’s got a pretty good quality of life. She loves school… she skis through the Maine Adaptive program. But my worst nightmare is thinking of when we’re not able to care for her. I feel so guilty as a parent that one day she’ll have to rely on her brother.”

“I have this child, and she’s taught me so much about life. She’s been so much of a blessing,” she said. “People need to understand that government can’t be everything to everyone. There are people who can’t take care of themselves, and that’s what the social safety net is for.”

Steve Robinson
Editor, Maine Wire