Saturday, August 22, 2009

Tennessee mother distraught when state pulls nursing care for her disabled son

From the Jackson Sun in Tennessee:

SAVANNAH, Tenn. - Glenda Sullivan (pictured) had managed to balance her busy life - working at Pickwick Landing State Park, caring for her severely disabled son, being a mother to her 21- and 13-year-old daughters, and helping care for her elderly diabetic mother and disabled brother.

That was until Aug. 11. While she was at work that day, she received a call from the company that provided 16-hour nursing care to her son, James "Eric" Sullivan (pictured). They told her that Eric would lose his TennCare coverage that day and nurses would not be there in the morning.

"I felt like I was having a heart attack," Sullivan, 50, said as she sat on the couch in her small mobile home with pictures of Eric and her two daughters on the walls. "I had no idea what I was going to do. I still don't know what we are going to do."

Eric, 27, slept peacefully on a recliner next to her, half-smiling when she tried to wake him up. He has a trach, a feeding tube and is legally blind, but he responds to the familiar voices of his mother and sisters when they talk to him.

Eric suffered severe head trauma at a baby sitter's house when he was 13 months old, Sullivan said. He spent six weeks in Le Bonheur Children's Medical Center in Memphis, where doctors diagnosed shaken baby syndrome. Doctors said he probably would not live beyond his seventh birthday, but he continues to defy those odds.

When Sullivan got the phone call about losing Eric's coverage, she said she was too stunned to know how to respond. But she has been on the phone for the last week, talking to people in the state Department of Human Services, TennCare and the Social Security office.

She had received letters in June and July from the Department of Human Services and TennCare, warning her Eric might lose his coverage. But she filled out all the forms they sent her, and she thought it would not be an issue anymore.

"They told me when I went down to the office and filled out the QMB (Qualified Medicare Beneficiary Program) form, that would take care of it," she said. "And I sent back the form TennCare sent me."

Sullivan said she receives insurance through her job that pays for 125 days of Eric's nursing costs and that her ex-husband also pays some through his coverage. But the remainder of the year had always been covered by TennCare.

Sullivan took a two-week medical leave from her job and is staying at home to care for Eric while she calls anyone she can think of who might help. She has no idea what she will do when those two weeks are up.

And she says she is already exhausted from providing 24-hour care to her son, who often requires extensive care at night.

"I am losing pay by staying home," she said. "I don't know how much longer I can do this; I need a break."

Kelly Gunderson, director of communications with TennCare, said Thursday that Eric lost his coverage because of the Daniels reverification process that TennCare is currently doing.

In January, the federal courts lifted a 21-year court injunction that prevented TennCare from checking the eligibility of about 154,000 members in the Daniels class. The Daniels class refers to enrollees who once received Supplemental Security Income but no longer do.

Anyone receiving SSI automatically receives TennCare, Gunderson said.

She said Eric once received Supplemental Security Income, but he now receives a Social Security Administration disability check that is too high to be eligible for TennCare.

She said how much a person can make and still receive TennCare depends on several different factors, including what category the patient falls under.

Eric is still covered by Medicaid, Gunderson said, but that does not provide the nursing care he had received.

The Sullivans' case is under appeal, Gunderson said, so it is possible his TennCare coverage may be reinstated.

"There are several different agencies involved, and the appeals process makes sure nothing has been overlooked," Gunderson said.

Sullivan said Eric was taken off SSI in May 2008 because she was told he would get better Medicaid coverage if he received a disability check.

She has now reapplied for SSI and hopes he will be eligible soon.

"If they would have just told me this in the beginning, it would have saved us a lot of trouble and worry," she said.

Sullivan's latest problems with TennCare are a continuation of her constant struggle to keep her son at home and care for him, she said.

"I've been fighting 27 years to keep him at home, and I'm worn out with trying," Sullivan said. "But we've made it through bad times before, and I'm sure we'll be OK."

Last year, the Department of Finance and Administration said Eric would need to be moved to a nursing home because that care would be less expensive.

Nursing services provided for Eric cost $17,770 a month, and a nursing facility could provide care for $4,700 a month, according to court documents.

Sullivan appealed the ruling. In July, a judge ruled TennCare had to continue providing coverage until a nursing facility agreed to provide the necessary care for Eric.

Sullivan said two different nursing facilities have come to evaluate Eric, but both of them said he requires too much care for them to take him.

"I thought we were all OK after the judge's ruling," Sullivan said. "Now this (losing TennCare) happens."

She does not want her son to go to a nursing home and believes he will be much happier and better cared for at home with people he knows.

"He is never out of my sight except when I'm at work," Sullivan said. "He loves listening to the voices of his sisters."

Sullivan's voice breaks frequently as she talks about her options. She doesn't know what will happen with her job if she takes more time off. Her 21-year-old daughter, who has been helping as much as she can, is leaving for college.

Even if she wanted to place Eric in a nursing home, she hasn't found one that can provide the level of care he needs.

"It is totally unfair," she said. "I'm trying to work so I can have insurance to pay for some of his expenses. I have to put food on the table and pay my bills. I've tried so hard to do the right thing; I'm not begging, but I need help so I can work. Six people are depending on me, and I don't know where to turn."

But Sullivan said the last 27 years have made her strong and she is sure she will make it through this hurdle.

"Every day I ask God for strength, and I know he is going to make a way through this," she said. "Eric is a blessing, and I can't imagine my life without him; he is here for a reason. I wake up every morning and see his smile - it makes my whole day."