As Terri Earley watches her son and daughter relaxing in the living room of her Topsham home, she sees two diverging examples of how the state cares for young adults with disabilities. A promising future lies in store for one, while the other falls into what she sees as a “lost group” with a much less certain fate.
Earley said her 19-year-old son falls into a gap unaddressed by state services — and she fears there are many more like him.
A shortage of state funds, Earley and her husband’s need to work, and what she says is a system geared toward the elderly, the physically impaired and more capable disabled young adults leave the family with few options.
Both adult children have autism, live at home and access services through MaineCare, the state’s Medicaid program. Carmen, 22, can be cranky and disagreeable and struggles to socialize, but she remains fairly independent, her mother said. She’s working toward finding and holding down a job through a program that connects people with disabilities to employment. Carmen exemplifies the type of individual who benefits from the state’s focus on helping young, disabled adults to live the most social and independent lives possible, Earley said.
Her son Bradley is a different story. A happy high school senior, he wanders around the house flapping his arms and enjoying a toddler toy that plays “Twinkle, twinkle little star.” Despite years of effort, Bradley can’t really communicate and has only a vague understanding of his surroundings. Personal hygiene and safety are beyond his grasp, as are dressing himself and preparing food. He sleeps in his parents’ bedroom.
A nurse visits the LaPointe home a few hours each day to care for Bradley when he’s not in school. The schedule allows Terri, a controller at Hodgdon Yachts in East Boothbay, and her husband, Wayne LaPointe, a trucker for Walmart, to work and care for Bradley during evenings and weekends.
But because Bradley has a few basic abilities — he’s mobile and can pull his pants up and down and adequately feed himself with a fork — he’s precluded from qualifying for more comprehensive nursing care available for the physically impaired. That could leave the family in a desperate situation next year, when Bradley graduates and needs care during the several hours each day he’s now spending in school, Earley said.
Bradley requires one-on-one assistance and supervision when he’s doing well, but recently worsening seizures have exacerbated his situation. A problem since he was 5, the seizures now come faster and more frequently. Bradley was experiencing as many as 10 seizures a month before starting new medication, biting through his tongue so often that it’s now deformed, his mother said. He still has at least one seizure a month that strikes without warning, she said.
“One second you’re looking at him and the next second he’s on the floor,” she said. “No noise, no sign, no nothing.”
Along with the nursing care, Bradley’s patchwork of services also includes help building his skills for daily living. When he turns 21, he’ll lose those services, however, which are offered under a program for children. Earley said staffing for that care already has been severely cut back.
The state also operates programs for adults with developmental disabilities.
Bradley’s eligible for those services, but roadblocks familiar to many Maine families have arisen there too. Since August 2012, he has been on waitlists for two “sections” of services available through MaineCare, one he’ll probably never get because he’s so low on the priority list and another that falls short of his needs, Earley said.
Under MaineCare, section 21 offers a broad mix of services, such as day programs and in-home care. That comprehensive set of services would work best for Bradley, providing nursing care at home as well as opportunities for him to get out of the house with proper supervision, Earley said. Section 29 provides a narrower set of services, geared toward supporting families who care for adult children with disabilities in the home.
Combined, more than 4,000 people are on those programs.
The state, strapped for resources, has placed hundreds of adults with disabilities on waiting lists for these services, dating to 2008. The service delays are now the subject of a lawsuit and become a sticking point in the fierce debate about whether to expand MaineCare under the Affordable Care Act.
Section 21 services are allotted based on a priority system, with residents in the most dire situations, such as those facing abuse and neglect, coming off the waitlist first. Others may wait months or years.
Bradley LaPointe, who lives with a safe, intact family, is among the lowest priority residents for section 21.
Section 29 services are first come, first served. Even when Bradley eventually comes off the waitlist for those services, the care is geared toward higher-functioning disabled adults, Earley said. The staffing levels are typically three to one, not enough to supervise him safely, she said. Earley’s working to find a two-to-one ratio program that includes at least one staffer who can handle Bradley’s seizures and has an opening come next summer.
Statewide, 884 people were on the waitlist for section 21 services as of Jan. 6, according to Jim Martin, director of DHHS’ Office of Aging and Disability Services. About 480 were waiting for section 29 services, including about 130 people offered services this month whose cases are pending, he said.
“The waitlist is our biggest dilemma at this point,” Martin said.
The state splits the costs of the programs with the federal government, kicking in about a third of total expenses. Based on average per person costs, it would take nearly $90 million in state and federal money to provide services to everyone on the section 21 waitlist. For the less expensive section 29 services, it would cost $10.5 million. (Some people, such as Bradley, are on both lists).
During the last legislative session, an additional $10 million was appropriated for the programs, allowing DHHS to move many individuals into services, Martin said. His office is also working on a project to better assess each individual’s needs, which should lower costs in the long run by better tailoring services, he said.
“Absent funding, it’s difficult to increase the amount of people that we can serve,” he said.
Individuals come off the waitlist if they access services, move out of state, or die.
Earley understands all this, but she hopes telling her family’s story will lead to change. In a December letter to Martin and Gov. Paul LePage, she wrote, “There is [a] huge gap in the availability of comprehensive care for mobile young adults who are unable to care for themselves at a very basic level. These individuals don’t fit in any of these more highly serviced groups, and Bradley falls into this lost group … We are entering a very frightening time for our family.”
Both Terri and her husband feel the state’s existing programs make it difficult for parents of severely disabled adult children to work and keep their kids at home, rather than send them to live at nursing facilities. More hours of in-home care or setting up day programs with adequate staffing and longer hours would allow them to keep their jobs, rest assured their son was well cared for, and save the state money, they said.
“They should want us to work,” Wayne LaPointe said. “We both have really good jobs, good-paying jobs, they should want that, as much as possible.”
Earley added, “Just let me work. I will deal with the weekends and never having a social life ever again. But just let me work.”
While she appreciates local advocacy groups’ work to improve the lives of functional but disabled adults such as Carmen, Earley said she wants more attention drawn to those like Bradley who need more comprehensive care. She has a meeting with Martin later this month, she said.
“Because there’s nothing to advocate for, it’s ‘Sorry, there’s a gap,’” Earley said.
The policies could change this year, according to Martin. DHHS plans for the first time to add in-home support care to the menu of services families can sign up for under section 29, he said. The department submitted information regarding the change to the federal government in November, and a public comment process will occur over the next two months, he said. The new option should be available by April 1, he said.
“I think that will help bridge some of the concerns that we hear,” Martin said.
Families must work within their individual allotted state and federal money for services, however. While the change would help families who want to shift more of their established budget toward in-home care, it wouldn’t give them extra funding for additional services. DHHS would need legislative approval to allocate more state money for that, Martin said.
The in-home nursing care hours top out at about 20 a week, not nearly enough to cover their time away from the house. So, even if the change is adopted and Bradley LaPointe comes off the waitlist, his parents will still need to find a way to care for him during the school day after he graduates, provided they both keep working.
With the rising prevalence of autism among children and the state’s resources ever shrinking, more young adults like Bradley will need services in the future, Earley and her husband said.
“Bradley’s on the front edge of it, there are so many severely disabled young people behind him that are going to come up in the system that are going to be in a similar situation as him,” she said.