The Right Thing for Candace: proved a tough task for mother

sarah-and-candace

BYLINE: PATTI GHEZZI Staff
DATE: June 27, 2004
PUBLICATION: Atlanta Journal-Constitution, The (GA)
EDITION: Home; The Atlanta Journal-Constitution
SECTION: Metro News
PAGE: C1

Candace Anderson sits upright, the corners of her mouth turned up, her eyes looking off to one side.

Her mother, Sarah, does not know if Candace, 21, can see or hear. But, at least, Candace is home.

The former Columbia High School honor student knows nothing of the time-consuming, energy-sapping fight her mother has waged against the state so Candace can remain at her DeKalb County house instead of going to a nursing home. She doesn’t know her mother had to enlist a Legal Aid lawyer. Nor does she know the relief her mother feels as she watches a home care aide lift Candace into her chair each day.

“I am truly grateful for the way things have turned out,” Sarah Anderson says.

Candace was once a college student intent on becoming a doctor despite losing her hearing and her ability to walk. When Candace was in middle school, she lost her hearing. Pain in her feet followed. Then, while she was a freshman at Mercer University in Macon, blindness struck, then numbness from her toes to her forehead.

Today, victories are measured in how many seconds Candace can hold her head up. For each small victory, Anderson is grateful.

Just eight months ago Candace’s future at home appeared bleak. Her mother was determined to keep her daughter home, but she had no idea how she was going to care for Candace after the state abruptly cut off her home nursing care.

In September 2002, Sarah and Charles Anderson brought Candace, the third of their four daughters, home from Emory University Hospital. She couldn’t see or hear. She couldn’t speak or swallow. She couldn’t move. She was tethered to a machine that helped her breathe.

The cause of Candace’s illness is a mystery. The nation’s top neurologists have examined her and don’t know what caused her health problems. Candace’s younger sister Sophia, 20, has the same unexplained hearing loss, though her health has not declined the way Candace’s did.

Finding the cause of her daughters’ illness was once Sarah Anderson’s top priority. But once Candace came home from the hospital, managing her care took over.

The family got help from state-paid nurses who tended to Candace for 12 hours most nights. There were glitches: The agency didn’t send a nurse on some holidays and sometimes a nurse and Anderson disagreed on how to care for Candace.

But the home nursing helped the family cope. Candace gained weight and strength. She started shrugging her shoulders and swinging her arms. Her mother was optimistic. Her daughter’s condition was improving.

But when Candace turned 21 in November, the state-funded care stopped. Candace was too old for the program that provided the nurses.

Anderson applied for her daughter to get home care under the state’s Independent Care Waiver Program, which provides funding for disabled adults who want to live in the community instead of a nursing home. Program officials rejected Candace, saying she was too sick and her home care would be too expensive.

Social workers urged Anderson to start looking at nursing homes.

“Everybody is telling me she is too needy and the best thing is to commit her,” Anderson said last November. “I tell them that is not an option.”

Sue Jamieson, an Atlanta Legal Aid lawyer, filed an appeal on Candace’s behalf with the Georgia Department of Community Health in December, arguing the state was obligated to serve her under the Americans With Disabilities Act.

Even the head of the Georgia Nursing Home Association agreed a person Candace’s age belongs with her family, not in a nursing home.

But Anderson learned that the public system for caring for the very sick and disabled, fueled by Medicaid dollars, favors institutions over home care. Medicaid funds nursing home care, but a waiver is required to get home care. State funds for waivers are limited; 250 Georgians are on the waiting list. Lack of funding prevents the state from serving more people, said a spokeswoman for the Department of Community Health, which administers the program.

As Jamieson worked on the appeal, Anderson struggled to care for Candace. Church volunteers washed her hair. Friends with nursing skills pitched in. Her Emory doctor wrote the state advocating home care.

Restless during the day, Candace often could not sit upright in her specially designed chair because Anderson had no one to help move her daughter safely from the bed.

In March, Jamieson and the state reached a settlement. The state will fund 10 hours of care seven days a week. Instead of a nurse, the state will fund a certified nurse assistant. If Anderson wants a nurse, the family must pay the difference.

Jamieson said the settlement, while adequate, “does not address the broader problem:” Georgia must recognize its duty under the law to people with disabilities.

Disability advocates are working to change nationally and locally how the government cares for the chronically ill.

In Georgia, a class-action lawsuit — Birdsong v. Perdue — is trying to “turn the long-term care system around,” said Susan Walker Goico, one of the plaintiffs’ lawyers. The plaintiffs are either in nursing homes against their wishes or at risk of having to go into long-term care because of disabilities.

“We want community care to be the first option,” Goico said. “We want the state to use the money currently used in the nursing homes in the community.” She added that those who want to remain in nursing homes would be able to do so.

A federal bill known as MiCASSA — the Medicaid Community Attendant Services and Supports Act — would free up federal funds used for nursing home care for community care. Versions of MiCASSA are parked in both Senate and House committees.

Anderson said she is satisfied with Candace’s settlement, though she is sympathetic to others languishing on the waiting list for the state waiver. Anderson may choose Candace’s aides, which she could not do before. Friends, neighbors and church members have also donated time and money to help.

Candace is able to spend several hours in her chair each day, often outside with the sun in her face.

Candace recently got another measure of freedom. Doctors determined she no longer needed the breathing tube. When she returned to Emory University Hospital to have the tube removed from her neck, health care aides were amazed at her strength. Her upper arms have defined muscles, which she uses to struggle against anyone trying to turn her in a way she doesn’t like.

She also started exercising her vocal cords. She screams when she needs attention, giving her family hope that she may someday be able to speak. Anderson looks forward to Candace’s next doctor’s appointment in August, in hopes that her improvement will yield insight to her medical condition.

“I see her gaining more and more control,” Anderson said. “Just the little things she does are so inspiring to me.”

6 comments

  • Stan Johnson December 25, 2013

    Sarah, Charles and Candace. It is my hope and prayer that God continues to give all of you strength in the face of your challenges. It’s been said God gives us no more than we can burden, All three of you are strengthened by God’s love. I sincerely beleive that.

    Stan Johnson

    Respond
  • Carol Almand November 6, 2013

    I was wondering if ya’ll would do an update on Candace?

    Thank you.
    Carol Almand

    Respond
  • joann beam July 27, 2013

    Hi, I was wondering if they tried dialysis. Also there has been some research into ambien. It’s been known to enable comatose patients to wake up momentarily. Beable to speak etc. They’re not sure how it works but it’s had some success.

    Respond
  • Carol Almand January 12, 2013

    Dear Mrs. Anderson,

    I have tried to call you several times. Your number must have changed. I believe you remember me and my son Bradley coming to Emory to see Candace. Reading over some information a few months ago I came to realize that Candace went to Mercer for a short time. Bradley is in his Junior year there. I would love to hear from you or speak with you. Love in Christ, Carol

    Respond
  • Jacqueline December 26, 2012

    This story touched me so, especually when it seems money is the issue. Im sure theyd find the issue and fix.it if the mom had the money. Its so saf but Im praying for you Candace. Plesse reach out to Oprah. Education was and is Candace dream Oprah shld help.

    Respond
    • Charlie December 26, 2012

      Thank you Jacqueline for your prayers.

      Respond

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