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Birthday threatens home care

Young Floridians turning 21 with major health issues could be forced into nursing homes.

By COLLEEN JENKINS
Published September 2, 2005

HUDSON - Next week, Buddy Horace turns 21. For most kids, the milestone brings celebratory shots at midnight and legal access to bars.

For Horace, who has muscular dystrophy, it could mean moving into a nursing home.

At least, that has been the state's plan for Horace and other almost-21-year-olds with complex medical needs who are on the verge of becoming too old to qualify for the nursing care that allows them to live at home.

Florida has a better option, known as the Aging Out program, to continue at-home health assistance for these young adults. But Agency for Health Care Administration officials say there isn't enough money to enroll all those who need it.

State Sen. Mike Fasano, a New Port Richey Republican, disagrees. More money is available for the nearly $3.4-million program, he said, but AHCA hasn't asked for it.

"This is a young man who got his high school diploma," Fasano said. "His reward shouldn't be (getting) sent to a nursing home for the rest of his life. That is wrong."

Robin Creel never expected to be stuck in this predicament a week before her son's birthday, which is Sept. 8.

Several years ago, Horace's case manager warned Creel that Children's Medical Services, which coordinates health care for low-income children with special needs, would no longer cover his home health care, feeding pump and other miscellaneous items after he turned 21. Creel quickly got her son's name on the Aging Out wait list.

In February, the program's coordinator assured Creel her son fit the eligibility requirements, which include being cognitively intact, medically complex and technologically dependant.

"I feel confident that we will be able to provide services for your son," Carol Schultz, the coordinator, stated in a letter.

Creel, 48, didn't rest easy. Her family lives in a 35-year-old mobile home and squeezes by on her husband Paul's $11-an-hour maintenance job. Horace can't walk, swallow food or breathe on his own. His fingers move just enough to touch a sensor that propels his $30,000 electric wheelchair, but are no longer strong enough to maneuver the controls on his PlayStation. Yet his mind is sharp, his bedroom filled with magazine cutouts of Jessica Simpson and heavy metal band posters.

Creel contacted Fasano for help. The senator, too, received assurances in February from AHCA that everything should work out.

Then, the June 30 letter from AHCA.

"Due to funding limitations," the letter read, "the program cannot enroll beyond its current capacity."

Currently, 28 individuals receive a Medicaid waiver through the Aging Out program, with four more on the wait list. An AHCA spokeswoman said this week the agency made its budget request based on projected enrollment and had since seen an increase in need and program costs.

Those unable to get a waiver for services instead can be enrolled in the state's Medicaid plan, which does not cover long-term, private, skilled nursing.

"If the individual cannot safely stay in the community without this service," spokeswoman Tiffany Koenigkramer wrote in an e-mail, "a skilled nursing facility is the alternative."

The news doesn't bode well for Peter Wesdorp III, a Pinellas Park High graduate who turns 21 in April. He is fed through a feeding pump and receives 10 to 12 hours of at-home care a day to help manage the symptoms of muscular dystrophy.

The state is willing to provide him with round-the-clock care, but his mother, Evalene Driemel, 38, has insisted over the years on shouldering half of the responsibility. She continues to do so despite developing herniated disks in her back from so many years of lifting her son.

Driemel regards caring for her son as a matter of principle. And now, after all this time, she sees the state's abrupt withdrawal of support for in-home care as a slap in the face.

"They helped us until they're 21, and now what?" she said. "You kick him to the curb?"

The St. Petersburg woman refuses to put Wesdorp in a nursing home. But she doesn't have the money for at-home care.

"My son looked at me and said, "Mommy, I'm not going there,' " Driemel said. "It would kill my son."

The parents' plight frustrates Fasano. He said he told AHCA officials months ago to request more money from the Legislative Budget Commission, which he sits on, and he would push it through.

"And they never did," he said.

The Creels recently appealed the state's denial at an administrative hearing. They didn't accomplish much.

The hearing officer won't make a decision regarding Horace's case until October. State health workers can't find a nursing home that would accept a young patient bound to a ventilator, not that the Creels would let their son go.

Then on Thursday, an AHCA official told Fasano the agency had found a way to add Horace to the Aging Out program, along with another individual who turned 21 last May. No promises were made for the others on the wait list.

Until she gets something in writing, Robin Creel won't have comfort.

"We haven't gotten any guarantees yet," she said.

Colleen Jenkins can be reached at 727 869-6236 or cjenkins@sptimes.com

[Last modified September 2, 2005, 02:15:35]