Society, including governments, need to plan, too. Expanded lifespans, a growing population and budget-crushed economies make it hard to meet all the needs for assistance, Finkelstein said. Out-of-home placement is not easy to find, waiting lists long. Still, she said, the solution that's chosen may be less important than coming to it before there's a crisis.
Mary Noble did that. The retired school teacher from Idaho Falls, Idaho, moved her daughter Patti, now 46, into assisted living a decade ago because her health and medication management had become too complicated to handle at home.
Noble was pregnant with twins when she contracted rubella. Patti, the smaller twin, suffered the effects while her sister, Becky, didn't. Patti is legally blind, has dwarfism and a disease that affects joints and muscles. She has had four joint replacements — three for her hips and one knee — and uses a wheelchair. She was born with one kidney, which has created other complications.
Her parents, who are divorced, share guardianship and have provided for her in their wills. Twin Becky looks after her, too, Noble said. One day, the responsibility will be hers.
Different conditions and paths
Osteogenesis imperfecta — a collagen disorder whose primary feature is brittle bones — brings no mental impairment, so those who have it experience a very different trajectory than, say, someone with a developmental disability. Most with OI will attend college and have careers and raise families, said Mary Beth Huber, director of program services for the Osteogenesis Imperfecta Foundation, based in Gaithersburg, Md.
Still, some will require care their entire lives. Planning and preparation matter.
"There is much more training for independence than in the past," she said — a truth that crosses medical conditions. Even language reflects it. What were called "pediatric conditions" in part because one sometimes did not get to grow up are now called "pediatric onset," meaning it started, but does not end in childhood.
A rehabilitation expert at the Virginia Commonwealth University Medical Center in Richmond, Va., Jeffrey S. Kreutzer, professor of neurosurgery and psychiatry, helps whole families cope with the aftermath of such brain insults as traumatic brain injury, Parkinson's, tumors and prefrontal dementia, among others. His team looks at emotional, cognitive and physical well-being of the affected person and those who support him.
"One of the core concepts of care is to understand where people are in the life cycle," Kreutzer said. Regardless of the condition, families need education to understand its characteristics and available resources, along with emotional or psychological support and skill building. That three-part approach to managing chronic illness or severe disability helps families hold it together and move forward, he said.
Kreutzer has noticed a progression with caregiving that's fairly typical. He talks of a 40-year-old who was assaulted; the resulting bleeding in his brain left him dependent on others. For a time, he lived with his parents. After they died, he moved to another state to live with his sister. "That's one rule of thumb," Kreutzer said. "Immediate family members tend to take care of the person. A person can get 'passed down' to family members."
Because she has no siblings, 7-year-old Sarah Jane's prospects could be more limited, Donohue said. It bothers him that systems of outside-of-family help focus so heavily on long-term care designed for the elderly. If something happened to him, his daughter would not belong in nursing homes designed for geriatric cases, any more than a young soldier wounded in war belongs with octogenarians, he said.
Whatever happens to Julie Kvam, it will not be her first transition. When she was young, she went to a specialized school and lived for several years in a small group home, her family near. They lived in Washington then, where her dad was a railroad station agent, her mom the postmaster. They moved to Arizona when they retired and it was there that Pat Kvam suffered a stroke and Russell Kvam cared for her, too. Pat never recovered from the stroke. Eventually, they moved to Utah to be near one of their sons and, finally, Pat moved into full-time care.
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