At 1 o’clock on a recent sunny afternoon, Jennie Segerson was all prettied up and waiting impatiently to go out. She was dressed in her favorite pink sweat suit and a gray T-shirt spangled with stars, her shiny brown hair pulled back from her face with butterfly barrettes. Her older sister Sue had changed Jennie’s diaper and tied her sneakers and helped her brush her teeth. Now Jennie was nestled on the squishy sofa in her Dover-Foxcroft sitting room, just waiting for Sue’s husband, Ken, to arrive in his silver truck and take her to her day care program.
“Silver truck!” she exclaimed, her shy smile breaking into a wide grin of delight and anticipation. “Silver truck!” She clutched her battered doll, Silver, in glee, waiting for the sound of the pickup pulling into the driveway.
Jennie is 29 years old and has severe mental disabilities, and has been diagnosed with autism. Throughout her life, with only a few interruptions, she has been cared for at home by her mother, by other family members and more recently, by paid home care workers from private agencies. But now, because her mother, Judy Segerson, is 69 and blind and no longer able to care for her safely, and because the agencies have been unable to provide the appropriate level and amount of care, Judy says, she faces a wrenching, permanent separation.
‘No one there for us’
When Jennie is upset, disoriented or overstimulated, when she feels threatened or insecure or angry, she changes. She becomes aggressive toward her caregivers, hitting, kicking and biting them. She beats her head against the floor until it bleeds. She bites herself – angry red bite marks are visible all up and down her arms in various stages of healing.
Judy said the outbreaks of violence are rare when Jennie is being cared for in the familiar surroundings of her home by the family members she knows and trusts. But a recent severe illness and long recovery necessitated Jennie’s temporary placement in a residential facility for individuals with mental retardation. Her behavior in that setting was extreme, her mother said, and the staff had a hard time dealing with her effectively. By the time Jennie was strong enough to come home, she had developed a deep distrust of professional caregivers.
Now, even at home, Jennie often resists her caregivers, a situation made worse, Judy said, by the inconsistent staffing and inadequate training of the agency workers. The workers think nothing of calling at the last minute to say they can’t come and it’s rare for the same person show up for more than two days in a row, she said. One worker was being stalked by her boyfriend, and another was caught buying illicit drugs while in the car with another client, according to Judy. One refused to take Jennie out in public because she sometimes burps and passes gas loudly. Others have simply walked out of the house when Jennie’s behavior gets unmanageable, Judy said.
Recently, the agency notified her it would discontinue all services in 30 days. Intervention by a state caseworker and an advocate for the disabled haven’t helped.
“At first, I thought they were great, and I felt like everyone was really there for us,” Judy said. “Now I’m feeling like there’s no one there for us at all.”
State involvement
Jane Gallivan, director of the Office of Adults with Cognitive and Physical Disability Services in the Maine Department of Health and Human Services, would not discuss the Segerson case, citing confidentiality concerns. But it is her office that contracts with private home care agencies to bring in qualified helpers and pays them through MaineCare, the state’s Medicaid program. Gallivan’s office also assigns caseworkers to ensure that clients are appropriately cared for, to coordinate additional services such as physical therapy, and to help work through any conflicts.
Currently, about 2,800 Maine adults with physical or mental disabilities are being cared for in family homes and group homes through the MaineCare program, Gallivan said. They get the personal care they need from private agency workers who are trained to provide basic health care, keep accurate records, and deal with their clients as individuals.
Gallivan said there is a strong network of private agencies in Maine that bring home care services to families like the Segersons.
“We like to keep families together as much as possible,” she said. “We worked hard to close Pineland” – a notorious state-run facility for people with mental disabilities that was closed in 1996 – “so we could develop a community-based system to support people close to their families.”
But Gallivan said it can be difficult for agencies to hire and retain enough qualified workers to care for challenging adult clients, and that family dynamics can sometimes make things harder.
“When a parent has been the caregiver, the reality is that no one’s going to do it as well as Mom does it,” she said. The family may want things done one way, she said, while the agency has trained the worker to interact with the client in another way. The result, she said, can be serious frustration all around. In some cases, Gallivan said, there is simply no way to keep an adult client with challenging behavior safe in his own home, and in such cases, placement in a group residence for adults with mental retardation may be the best solution.
A mother’s loss
Eighteen years ago, after Judy was divorced, she and Jennie left their home on one side of Dover-Foxcroft and moved in with Judy’s mother, Mary Stuart, on the other side of town. It’s the house Mary Stuart was born in, a solid old Victorian on a quiet side street, painted a deep red. Inside are high, airy ceilings, hardwood floors, handsome built-in cupboards, and ornate brick fireplaces.
Mary Stuart – now a sparkling 101 years old – and Judy her daughter are both artists. The walls of the house are vibrant with their colorful landscapes and still-lifes. The rooms are bursting with three generations’ worth of stuff: books and dishes, rugs, furniture, dolls, souvenirs, knick-knacks, bric-a-brac, whatnots. Everything’s a little cluttered and dusty these days, but there’s a lingering sense of grace, comfort and homeyness here.
Jenny has the two rooms in the front of the house, where the sun streams in through big windows – adjoining parlors, back in a more formal day. Judy sleeps on a small daybed in one corner, vigilant to her daughter’s needs during the night. They share a downstairs bathroom with grandmother Mary, who sleeps in what used to be the study, with a fireplace roughly the size of a Volkswagen Beetle next to her bed.
Jennie’s sister Sue recently moved back from North Carolina to help care for Jennie, bringing her husband, Ken, and two teenage children with her. Sue’s family has staked out the upstairs. The teens go to Foxcroft Academy, while Sue and Ken take turns looking after Jennie. But it’s not enough.
Judy’s blindness, which is related to her diabetes and has progressed relentlessly over the past five years, has rendered her incapable of carrying on as Jennie’s primary caregiver. Without outside help, there’s no longer a way to keep her youngest child safe at home. For the time being, friends and extended family members are pitching in, while another agency determines whether it can make a commitment to keep Jennie at home. If not, the most likely placement is many miles away – a huge barrier, and a huge loss, for a loving mother who can no longer drive.
After smiling and waving from the front porch as Jennie rode off in the silver truck to her day program, Judy turned to grope her way back into the house. She paused at the door and turned back toward the sunny front yard and the sound of the pickup accelerating away.
“I made a commitment to her when she was 19 days old,” she said. “And it has been wonderful to see her learn and flourish, to have such a joyful life. To see her lose all that will crush me.”
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