Candace: State cuts off funding for nursing care at 21st birthday|
By PATTY GHEZZI
The Atlanta Journal-Constitution
Inside her family's sun-soaked living room, a once independent woman depends on others to do everything for her.
Dab her lips with Vaseline. Suction her breathing tube. Give her shots to prevent blood clots. Make sure her feeding tube isn't clogged. Change her diaper.
Sometimes Candace buries her face in her mother's chest and sobs. "It'll be OK," Sarah Anderson says as she rubs her daughter's shoulders. "I'm here."
Candace -- who cannot see, hear, sit up or speak -- doesn't know how precarious her life at home is.
For over a year, Sarah Anderson managed to care for Candace with help from state-paid nurses who came to the house most nights. When Candace turned 21 in November, the nursing visits stopped.
"The state has abandoned her," says her mother, who now cares for her daughter around-the-clock, except for a few times a week when church friends or neighbors can come by.
Before Candace's birthday, her mother applied for a state program that provides home care for adults -- known as the Independent Care Waiver Program. It rejected Candace, saying her services would be too expensive. A Legal Aid lawyer representing Candace is appealing the denial, saying the Americans With Disabilities Act of 1990 requires the state to accommodate her.
The only way the south DeKalb County family can get public-funded care for their daughter is to put her in a nursing home, with no guarantee it would be in the metro area. "Not an option," Sarah Anderson says. She can't imagine leaving her daughter in an unfamiliar place, where Candace's father, sisters and 8-year-old niece could not stroke her cheek every day.
State officials would not comment on Candace's case, citing privacy laws. Advocates for people with disabilities say it's common to have to fight for home care, because the Medicaid-driven system favors putting people in institutions.
Some states have passed laws giving disabled adults more choices and control over their Medicaid-funded care. In Georgia, such change has been slow in coming, said Mark Johnson, advocacy director at Shepherd Center in Buckhead and co-founder of ADAPT, an organization that supports community rather than institutional living for people with disabilities.
Doctors think Candace has a mitochondrial disorder, which causes the energy-producing part of cells to fail. There is no cure for the genetic disease, and there is no way to know how long Candace will live. After three months of tests, Emory University Hospital discharged Candace in September 2002, saying doctors could do nothing for her. Since moving home, she has gained weight. Her health has not further declined.
Candace's sister Sophia, 19, lost her hearing while in high school, but her health has not further declined.
Dr. Jonathan Glass, Candace's neurologist and a national leader in the field, said she needs "an alert caregiver at her side 24 hours per day." In early November, Glass urged the state to keep paying for nursing visits. "Candace's condition has not changed in any way," he wrote. "The only change is that she is facing her twenty-first birthday."
Six weeks since the nursing care stopped, Sarah Anderson is exhausted and frustrated. She wonders why the government doesn't prefer home care -- with the family paying for food, housing and utilities and providing much of the care.
Even Fred Watson, president of the Georgia Nursing Home Association, called the denial of Candace's home care funding "crazy."
"We agree that nursing homes are not a place for people who are young and disabled," he said.
Most of the time, Candace lies motionless, though at times she jerks her head from side to side, slapping her cheeks against her pillow. Silky hair no longer falls over her ears. Her mother passed the scissors to a friend recently and asked her to cut it. Short hair is easier to manage.
Throughout the ordeal, Candace has remained alert. Her family communicates by tapping on her forehead or the back of her hand. Three taps mean "I love you." A peaceful half-smile creeps across her round face, suggesting she understands.
Candace was in middle school when her hearing went out without warning. Sharp pain in her feet followed, though Candace stuffed them into fashionable, pointy-toed shoes anyway. As doctors looked for the cause of her hearing loss, Candace graduated from Columbia High School in 2001 as an honor student with one of the highest SAT scores in her class.
By the time she moved into a dorm at Mercer University, she needed a wheelchair to get around. Over winter break, she went blind. Then numbness spread up her body to the tip of her tongue until she couldn't move.
At first, her mother searched for what was attacking her girls' health. Once Candace came home, her care became Sarah Anderson's sole mission.
As Candace's 21st birthday approached, her mother asked about continuing the nurse visits. She said a state official assured her Candace would be covered by another program, even though there are 262 people on the waiver waiting list. Sarah Anderson says she was told Candace would be a priority because her disabilities are so severe.
Instead, it appears the severity of Candace's condition rendered her ineligible. Despite her doctor's assessment, state officials said she does not meet the criteria that requires a patient be medically stable. They estimated the cost of her home care at $187,479 a year, based on skilled nurses making $40 an hour. The average annual cost for nursing home care is about $56,000, according to industry surveys.
Sarah Anderson says the home care costs are exaggerated. And even a few hours a day would be better than nothing.
A federal bill known as MiCASSA, Medicaid Community Attendant Services and Supports Act, would open up a range of government-funded home care options. U.S. Rep. Denise Majette (D-Ga.), Candace's elected representative, is one of the bill's co-sponsors. But MiCASSA is stalled in committee.
Meanwhile, the Andersons rely on friends from Paradise Church of God in Christ in Forest Park, where Candace used to belt out solos she could not hear. Women with full-time jobs, families and no training wash Candace's hair, bathe her, change her bed linens, marvel at her resolve. But the family can't expect them to spend hours at their house forever, and volunteers aren't always available, especially during holidays.
The women are amazed at how much goes into caring for a young adult. Said volunteer Patricia Baker: "I don't think anyone would expect any one person to do all this."
colleen10
1,326 Posts
As much as I hate to say, the government isn't the only one that makes a sick person jump through hoops or dangles health resources/care in front of them like carrot. One of my classmates has a 2 year old son born with a genetic anomoly by which he needs nursing care 18-20 hours a day. Her private insurance company does the same thing to them ever 6 months and keeps reducing the hours even though his status has not and will not ever change.