Whether it’s selling their homes, quitting their jobs or putting a loved one in a nursing home, more and more Maine parents of developmentally disabled children are being forced to make difficult decisions in order to provide their kids with the care they need.
Terri Earley has two children who suffer from autism. Both are representative of each side of the spectrum. Those that are given every opportunity to succeed and those that are part of what Earley calls “The Lost Group.” Her 22-year-old daughter, Carmen, is doing well with the services the state has to offer. She’s even closing in on a job through a program that connects those with disabilities with work. But Earley says her son, Bradley LaPointe, is not so fortunate. Bradley can barely communicate and struggles to understand his surroundings. He suffers from violent seizures that come on with no warning. Earley and her husband work full-time and once Bradley graduates from high school this year there will be a large gap of time where someone will need to look after him. This leaves the family with only a few options, none of them being particularly attractive.
“I could quit my job or my husband could quit his job so that we’re home. Or we could accept the nursing side of it, because he has a legal right to nursing care. So we could put him in a nursing home, basically. Those are really our only options,” Earley said.
There are two federal waiver programs that could help Bradley: Section 21, which provides day programs and in-home care that would be ideal for a person in Bradley’s situation; or Section 29, which provides less comprehensive care that most likely would not be enough for someone in Bradley’s condition. He has been on the wait list for both Section 21 and 29 since 2012. Those on the wait list for Section 21 services, which is what he desperately needs, are selected based on priority. Meaning, due to a shortage of funds, it’s unlikely that Bradley will ever get those services since he’s so low on the priority list.
“My perspective is that if we were to choose a nursing home, that the cost of that is astronomical so it would seem that it would be a more economically viable option to provide the supervision. I mean, he just needs supervision is really what we’re looking for,” said Earley.
Jim Martin, Director of the Department of Health and Human Services Office of Aging and Disability Services says they have people like Bradley who have been on the Section 21 wait list for years. Martin says it would cost about $90 million to get everyone currently on that list the services they desperately need. That’s state and federal money combined. But to do it he says he needs the help of the Maine Legislature.
Mainers like Bradley have now been thrust into the center of the battle over expanding MaineCare. If MaineCare expansion were approved by lawmakers, it would provide health insurance to at least 70,000 uninsured Mainers under the Affordable Care Act using 100% federal money for the first three years. After that, the state would pay 10% of the costs. But that expansion of MaineCare would do nothing to help people like Bradley. Republican lawmakers have argued that it would be unfair and morally wrong to pass over the elderly and disabled people of the state who are languishing on these wait lists to take care of those people who they describe as “able bodied.” Some Republican lawmakers have said they would be much more open to the idea of expanding MaineCare if the wait list was taken care of first.
Martin says the Department of Health and Human Services is currently working to implement a “standardized assessment process” for the two waiver programs. This will allow DHHS to administer exactly the services patients require and more efficiently use their limited resources. That way, in cases like Bradley LaPointe, if it would be more cost effective and better for the family to provide less expensive home care, as opposed to paying for a full-time nursing home, that would be an option for the department.
“What we know today is that the support needs don’t necessarily match up with the actual services that are being received,” Martin said. “In some cases, members are receiving more services than what they need. And in some cases less. So the state is moving forward with trying to align those two objectives.”
Martin says they hope to have the new initiative up and running by October of next year. Terri Earley says she plans to meet with DHHS officials to see what can be done to help her family out of their current conundrum.