Zach Sayne at age 5, with his mother Nola.
Zach Sayne was 25 when he died earlier this month at the place that had been his home for 15 years — a children's nursing home in Alabama.
But that was too far away, 200 miles too far, for his mother in Georgia. Nola Sayne was trying to bring him back, closer to her home. The story of why she couldn't reveals the bureaucratic traps, underfunding and lack of choices that plague state Medicaid programs.
We told the story of Nola Sayne and her son Zach in our 2010 series, Home or Nursing Home: America's Empty Promise to Give the Elderly and Disabled a Choice. One story was about the surprising number of young people — teens and those in their early 20s — living in American nursing homes.
The story explained Nola Sayne's dilemma and why parents often had no choice about placing their young sons and daughters into nursing homes.
For Nola Sayne it happened 15 years ago when Zach was just 10 and had a feeding tube inserted into his stomach. Zach had cerebral palsy and seizures. He was partly blind and couldn't talk. No other after-school program would take him.
Nola put a wanted ad in the paper. One older woman said she'd take Zach into her home day care. But it didn't last.
Sayne thought about quitting her job as a paralegal, but she was a single mother then with two kids. She needed her salary, and she needed the health insurance for Zach. The state of Georgia would pay nothing if Zach lived at home. But it offered to pay the full cost of a nursing home.
But the only nursing home that would take Zach was in another state, in Montgomery, Ala. For the last 15 years of Zach's life, his mother made that 400-mile round trip every two or three weeks. And when he got sick, she left her job and moved into the hospital with him. She counts 40 hospital stays in the last 15 years, including three hospitalizations for respiratory problems in December and January before Zach died, back at the nursing home, on January 5th.
She'd moved Zach from Georgia's Medicaid program to Alabama's because no nursing home in Georgia would take him. When she wanted to bring him home in 2010, Georgia Medicaid officials told her that Zach was no longer a Georgia resident, and no longer qualified for Georgia programs.
Sayne could regain guardianship for her son, bring him home and put him on a waiting list, several thousand people long, for services from Georgia Medicaid. In the meantime, he'd have to live in a geriatric nursing home.
She looked into doing that, but there was another Catch-22. No Georgia nursing home would take a man in his 20s.
Sayne feels her son got good care at the Alabama nursing home. But over time, he got less of it. Until he was 21, he was in a program for children in nursing homes that included physical therapy and other treatments.
Once he became an adult, that program ended. Zach spent the last years of his life mostly in bed and his health declined.
"His life benefited others more than it benefited him," says Sayne of her son. "Zach taught me so many things. I'm a better person because I was his mother. My selfishness level was pretty high when I was young and when I had him he made me grow up ... Since then I've never taken anything for granted. Everything's a blessing."
Filmmaker Narcel Reedus included the Sayne family's story in Not Home, his documentary about children in nursing homes.
Georgia and other states are under pressure from the U.S. Department of Justice to offer more alternatives to nursing home and institutional care to young and elderly people with disabilities.
A Supreme Court ruling in 1999, on a case that originated in Georgia, established a right for people, under the Americans with Disabilities Act, to get long-term care in a setting that is the "least-restrictive" of their personal freedom. But states, facing huge budget deficits and rising Medicaid costs, have struggled to make changes required by the court's Olmstead decision.
In October, Katie Chandler, who runs the Children's Freedom Initiative, told NPR's Neal Conan on Talk of the Nation, "We firmly believe that all children with disabilities can be served in a community setting."
There will be a memorial service for Zach Sayne on Jan. 19. He is the second young person featured in the original NPR story to die before leaving a nursing home.
Bylon Alexander, who was disabled by a stroke when she was 6 and toured alternative placements with Nola Sayne, had talked about wanting to find a place to live so that she could finish high school and go to college. But she died in a nursing home the next year, at age 24.