Disabled Children Become Adults, Lose Services

Dr. Tamiko Kido checks out Benjamin Ligums' sutures at Baylor's Transition Medicine Clinic in Houston, as his mother, Ann Ligums, looks on. Ben was given 18 months to live when he was born with a degenerative brain disease. He's now 26.
Dr. Tamiko Kido checks out Benjamin Ligums' sutures at Baylor's Transition Medicine Clinic in Houston, as his mother, Ann Ligums, looks on. Ben was given 18 months to live when he was born with a degenerative brain disease. He's now 26.

HOUSTON -- Elaine Hime dreads a day that should be a landmark — her profoundly disabled son’s 21st birthday.

That’s when Rutherford, who has cerebral palsy, a seizure disorder, and requires oxygen and around-the-clock care to survive, will transfer from children’s Medicaid to adult Medicaid — and lose many of the health care and nursing services he currently receives.

“It will change our lives,” Hime said. “We’re going to be so much more restricted in what we can do for him.”

The Himes’ silver lining is a team of doctors and social workers at Houston’s Baylor College of Medicine who are pioneering “transition medicine,” a field designed to help severely disabled juveniles make the leap into adulthood.

Every year in the U.S., nearly half a million children with special healthcare needs become adults. The sickest of these patients used to die in childhood; now, medical advances are keeping them alive much longer.

Transition medicine professionals can’t change the reality that patients will lose many of the services they rely on when they age out of children’s Medicaid, from private duty nursing to dental and mental health care. But they can help families meet some of their toughest challenges, like finding specialists who will treat complex conditions, and health care solutions that won’t bankrupt them.   

“This transition — it’s a rude awakening for a lot of families and patients. It’s not logical to them, nor to us,” said Dr. Tamiko Kido, one of the Baylor Clinic’s transition medicine specialists. “We help bridge that gap.”

In Texas, juveniles with disabilities receive everything a doctor deems “medically necessary” under the well-funded children’s Medicaid program. But when they transfer to adult Medicaid at 21, where money is far tighter, services are “almost cut in half,” said Dr. Cynthia Peacock, who founded the Baylor transition medicine clinic. 

Parents who have relied on in-home nursing services often have to give up their careers to be caregivers, losing salaries they need to fund skyrocketing health care costs. Others are forced to put their relatives in nursing homes or other institutions.

Dental care, which requires anesthesia for difficult patients, becomes an out-of-pocket expense, leading some parents to get all of their children’s teeth pulled instead. Everything from basic leg braces to top-dollar medical devices can become the family’s financial responsibility.  

“For certain supplies, the patient medically needs it, and nobody’s going to pay for it because the family can’t afford it,” Kido said. “I can tell the family what good care is, but I can’t deliver it.”

That’s not the only bad news families face as their disabled children age. Once young adult patients age out of pediatrics, finding adult primary care doctors is incredibly difficult.

These doctors are already in short supply in Texas. Getting them to accept patients with complex conditions — many of whom are on Medicaid or other low-reimbursing insurance — is tough enough. Finding primary care doctors with any kind of expertise in congenital heart defects, cystic fibrosis or rare genetic disorders is next to impossible. 

“They’re afraid to take care of these patients, because they don’t have the knowledge, the skill set. Nobody taught them how to do it in medical school,” Peacock said.

Even when a patient does find a primary care doctor, linking them with appropriate specialists is another hurdle. Many don’t want to take on time-consuming patients, or the mounds of paperwork and equipment requests it requires to get a simple procedure done.

And some don’t like the hassle of having a complicated — or unpredictable — patient.

“There’s the stigma of having conditions that don’t look nice, don’t smell nice,” said Lisa Osten, a social worker and program director in the transition medicine clinic. “If you smell an adult in a dirty diaper, are your other patients going to come back? You run into those barriers a lot.”

Many caregivers say it’s so difficult to find a doctor that they must rely on hospital emergency rooms for even minor problems, compounding health care costs.

At the one-of-a-kind Baylor transition clinic, doctors focus on the health care problems specific to young adults with chronic illness: the child cancer survivors who get heart disease from chemotherapy; the young adults with Down syndrome who get early-onset Alzheimer’s disease; the immobile, wheelchair-bound adolescents who get severe osteoporosis.

Social workers guide parents and caregivers through Medicaid, private insurance, and charity services, helping them stretch their dollars without sacrificing too much care. They also educate them about Medicaid waiver programs that might provide additional nursing and supplies, and hook them up with legal advocates to fight for more funding.

They do it with little staff and a limited budget. Peacock said she's lucky she founded the clinic in 2005. If she was doing it in today's economy, there's no way it would've been approved. She said the only reason the clinic works is because it’s at a teaching hospital. 

And she said it would be next to impossible to make a living doing it full time in private practice. Peacock must run the clinic, which is supplemented with philanthropic dollars, as a hobby; her full-time job is overseeing Baylor’s three-dozen internal medicine-pediatrics residents.

When Ann Ligums and her husband moved from Boston to Houston early this year, they worried what kind of care their son Benjamin would receive in Texas. Ben, who was given 18 months to live when he was born with a degenerative brain disease, is now 26, largely the result of his top-notch childhood medical care. When Ligums met the doctors at the Baylor Clinic, she said she knew Ben’s transition would be seamless.    

“They told me the services I needed, the agencies I should contact, the forms I should fill out. We had an appointment scheduled the day after we arrived,” she said, rubbing Ben’s head with her palm as he gurgled and grinned. “It has made everything about bringing a severely handicapped person to this state as good as it could be.”

The Himes are hoping for the best for their son Rutherford. When he turns 21, his nursing care will drop from 90 hours a week to fewer than 50. His parents will have to pick up the slack.

The lack of dental coverage is also a concern.  Rutherford, who feeds through a tube in his stomach, won’t cooperate with dental cleanings unless he’s under anesthesia.

“When you’re the parent of a child like this, it’s hard to prepare a week, even a day, ahead of time,” Hime said. “We’ve got two years left to try to work something out.” 

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