Don't Get Sick and Expect the Government to Take Care of You..

[CseMgr1, ASN, RN]

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."

[pickledpepperRN]

This cannot be tolerated in a compassionate society. Now that you made us aware of this WHAT CAN WE DO?

Should we write letters?

Send copies to the President and candidates for office?

[sprtbikegrlsv65]

this girl is in my age range...i just can't believe that there is NOTHING the goverment will do...though they dole out out tax dollars to pay salaries for themselves...that's just wrong!

[Chrislynn2003]

This is horrible. A good friend of mine's son was in the same situation. When her son turned 20, they were going to take away Medicaid and cut back his nursing visits. They went through months of trying to get him into a different program and it still wasn't fitting his needs once he got into it. They said that he wasn't a "state" child, meaning living in a foster home, so he was denied all of his previous medical rights. What can we do to fix it? These families shouldn't be living in fear that they might not have medical treatment.

Christine

[memphispanda, RN]

Why should ANYONE expect the government to take care of them?

I do feel for the family, really. I am not cold-hearted. I think it's an awful situation.

[passing thru]

The patient must be an American citizen.

I see citizen's of a dozen diferent countries' getting state-of-the-art medical care ...

every day that I go to work.

Friends and relatives of employees.... who just happened to be visiting the good old USA when they needed a bypass, a pacemaker, their diabetes treated, etc.

[ktwlpn, LPN]

Originally posted by sprtbikegrlsv65

this girl is in my age range...i just can't believe that there is NOTHING the goverment will doB]

The article said that her care would be provided for in a long term care facility...as close to them as possible and get her on waiting lists for the home of their choice

[NurseHardee]

Panda, you might be surprised? But don't we have governments to help us take care of ourselves? Instead, we have one that takes care of corporations! What on earth do you think governments are for, anyway?

NurseHardee

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Why should ANYONE expect the government to take care of them?

I do feel for the family, really. I am not cold-hearted. I think it's an awful situation.

Memphis Panda

__________________

[caroladybelle, BSN, RN]

I know that this sounds heartless, but.....

The government has offered to take care of her, in the most financially responsible way. The most economical way possible is in LTC, which her family has refused, as per their choice. If they were to continue the more expensive home care, that would be money that would be taken from someone else's care, as well as open the door to everyone in similar circumstances, also receiving more expensive care.

If her family declines that, well then they can do so.

[Joe Hill]

Originally posted by memphispanda

Why should ANYONE expect the government to take care of them?

I do feel for the family, really. I am not cold-hearted. I think it's an awful situation.

What we continually forget is that in this country, the government is:

• of the People
  
• by the People
  
• for the People
  

We as a people must take the responsibility and decide how much of our resources will go to care for one another.

Originally posted by spacenurse

This cannot be tolerated in a compassionate society.

The problem is that we are not a truly compassionate society, we just like to think that we are.

[elkpark]

Well said, caroladybelle and Joe Hill (also, Joe, love the quotes (and recognize all of them!))

[maureeno]

don't get sick

don't lose your job

don't be in an accident

don't birth to defective children

don't get old

don't make any mistakes,ever

don't be born into the wrong family

in America we are individuals

all waiting to hit it big

[maybe those looto numbers will pay off]

in America we are Bible-toting social Darwinians

with our eye on the bottom line

unless its Halliburton

in America we can't afford to spread risk

through single-payer insurance

because that would violate our perception

of God given pre-destination

I realize this thread is about a particular case

the numbers do not seem right to me

$56,000 for total dependent care LTC for a year?

a survey from 2001 showed nursing home costs $156/day in Georgia

EXCLUDING costs for therapy, rehabilitation or medications

http://www.aarp.org/bulletin/longterm/Articles/a2003-10-30-dailycost.html