HERMON, Maine — Katie Spencer’s long list of medical problems began when she was just 2½ months old. She was blind, the doctors informed her parents, Rita and John Spencer of Hermon.
Next came seizures, developmental delays and a devastating diagnosis. Katie suffered from a condition called septo-optic nerve dysplasia, a rare brain disorder that causes impaired vision, a host of intellectual and neurological problems, and hormone deficiencies.
Now 32, Katie’s diagnoses have grown over the years to include diabetes, Asperger’s syndrome, mild cerebral palsy and obsessive compulsive disorder. But it wasn’t until she started passing out that Rita and John finally decided Katie needed to move into a group home. Katie began losing consciousness without warning — at her day program, during swimming classes, at a dance, at home.
The episodes are sporadic. Some days Katie won’t pass out at all, on others she’ll faint three times.
“They’re frightening for everybody and a lot of people don’t want to take care of her because of them,” said Rita Spencer.
Katie’s doctors implanted a device in her chest to record the episodes in hopes of finding a cause, but Katie’s OCD drove her to open the incision with her fingers and dig it out. That led to a hospital stay for a nasty infection, one of many hospital visits over her lifetime.
“We’ve had many, many, many hospitalizations. Too many to count,” Rita said. “If she gets a cold or a flu it is life-threatening for her. Her blood pressure bottoms out and she goes into a comatoselike state.”
Last November, Rita and John asked the Maine Department of Health and Human Services to place Katie in a group home. Her day program couldn’t handle Katie’s fainting episodes and her need for constant supervision, Rita said.
Rita’s job as an operating room scheduler at St. Joseph Hospital in Bangor and John’s work as a diesel engine designer and mechanic keep them away from home during the day, and Rita’s elderly mother, who also lives with them, is on oxygen and can’t help care for Katie.
Rita also recently was diagnosed with an autoimmune disorder and is taking chemotherapy drugs. She worries she’ll be too weak to care for her daughter.
DHHS, which is strapped for cash after recent rounds of budget cuts, denied the Spencers’ request for housing for Katie through MaineCare, the state’s Medicaid program.
More than 900 adults with intellectual disabilities and autism who need housing and other services are on a wait list that dates to 2008. Because there’s not enough money to accommodate the need, DHHS prioritizes cases based on each person’s medical and living situation.
A measure of reprieve came in the last legislative session. Lawmakers appropriated an additional $1 million toward services for those on the wait list, according to DHHS spokesman John Martins.
Katie qualifies medically for housing, but not as a top priority because she fails to meet a companion requirement: abuse, neglect or exploitation. Under state regulations, only individuals who are both medically needy and in a dangerous living situation can jump to the top of the wait list.
“It isn’t right. What does one even have to do with the other?” Rita said. “She was born with this disability and she’s had it all of her life.”
Katie was placed in the second priority group, meaning there are 220 people ahead of her waiting for services. With only a handful of people at most taken off the wait list each month, Rita’s doubtful Katie will ever be placed in a group home.
“She’ll be 60 years old, I’ll be dead and gone,” Rita said.
Ricker Hamilton, who heads the department’s Office of Adult Cognitive and Physical Disability Services, said DHHS is bound to follow state regulations governing the wait list.
“We have to follow that,” he said. “If we don’t, we’d have all these people in abusive situations who weren’t getting help,” he said.
But an advocate working with the Spencers said the state has clamped down on the wait list criteria after a restructuring of DHHS passed by the Legislature this spring.
Before the overhaul, regional DHHS staff met regularly to determine which cases were most urgent, according to Charles Shaffer, who works within DHHS’ Office of Advocacy, an independent agency whose work will be outsourced in August as a result of the restructuring. Individuals in urgent need of services could be bumped to the top of the wait list, regardless of their priority designation, if case managers and others familiar with their situation determined they were at risk, he said.
Some adults with intellectual disabilities were deemed top priority before the abuse, neglect and exploitation policy kicked in, Shaffer said. If those individuals were found to be in safe living situations, someone more in need could jump ahead of them in line, he said.
Now those decisions are being made to the letter of the law in DHHS’ central office in Augusta, he said.
“You have to have room for exceptions. That has been taken away … The decisions are not being made by clinicians, they’re being made by bureaucrats,” Shaffer said.
Shaffer also advocated for the family of Casey Burke in its battle with DHHS to find housing for their adult autistic son.
Hamilton countered that DHHS is following protocols that have been in place and approved by the federal Medicaid program for years.
“This has nothing to do with the restructuring,” he said. “The restructuring isn’t even in place yet.”
His office is working with providers, parents and guardians to find better ways to determine who’s most at risk and in need of services, Hamilton said. The abuse, neglect and exploitation requirement may not make the grade, he said.
“What we’re finding out now is maybe we need to change that,” Hamilton said.
It’s little consolation to Rita Spencer. Legislation to change the policy would take months, followed by a review by federal Medicaid officials.
Rita Spencer is appealing DHHS’ decision and argues that the department’s solution — to provide additional services before and after Katie’s day program — still leaves gaps in her care and puts Katie in the hands of staff who aren’t medically trained to handle her.
Katie takes 15 medications a day and needs daily hormone injections.
The Spencers have paid taxes in Maine their whole lives, Rita said, and Katie’s care was covered by their private insurance until Rita changed jobs several years ago and her new insurer refused add Katie to the policy.
Maine law allowed children to stay on their parents’ insurance plan until age 25, but Katie was too old.
Shaffer estimates it would cost the Spencers at least $200,000 a year to pay for Katie’s care out of pocket. Even rich families often can’t absorb the steep costs of round-the-clock care, he said.
“I have families making well into the six figures and they can’t afford to do it,” Shaffer said. “When their children grow up, they go on MaineCare.”
Parents’ income no longer is considered in determining MaineCare eligibility after their children become adults.
Now it’s fair that the state provide the housing their daughter needs, Rita said.
Two group homes in the Bangor area are willing to take Katie in, but Rita feels she essentially would have to abandon her daughter to fit the housing criteria. She’s still stinging from a phone call with a DHHS employee who pointed out that the state could step in if Katie wound up in a crisis center or homeless shelter, she said.
“I can’t do that, and they know it. They know we won’t do it. They know parents aren’t going to do that to their kids,” Rita said.
After years in her parents’ care, Katie’s ready to live more independently among her peers, her mother said. Rita and John are at the end of their rope.
“We need extra help and there’s nobody to help us,” she said.