Most children enrolled in Medicaid who get a diagnosis of attention deficit hyperactivity disorder don't get timely or appropriate treatment afterward. That's the conclusion of a report published Thursday by a federal watchdog agency, the Department of Health and Human Services' Office of Inspector General.
"Nationwide, there were 500,000 Medicaid-enrolled children newly prescribed an ADHD medication who did not receive any timely follow-up care," says Brian Whitley, a regional inspector general with OIG. The report analyzed Medicaid claims data from 2014 and 2015.
Those kids didn't see a health care provider regarding their ADHD within a month of being prescribed the medication, though pediatric guidelines recommend that, he says. And one in five of those children didn't get the two additional check-ins with a doctor they should get within a year.
"That's a long time to be on powerful medications without a practitioner checking for side effects or to see how well the medication is working," Whitley says. Additionally, according to the OIG report, "Nearly half of Medicaid-enrolled children who were newly prescribed an ADHD medication did not receive behavioral therapy," though that, too, is recommended by pediatricians.
Elizabeth Cavey, who lives with her family in Arlington, Va., knows just how important it is to get a child with ADHD accurately diagnosed and treated. Kindergarten, Cavey says, was a disaster for her daughter.
"She was constantly being reprimanded and forced to sit still," Cavey recalls. "And she's a bright child, but she kept falling further and further behind in learning letters and language, because she could not concentrate."
The pressure and stress took its toll. Her 5-year-old daughter became anxious and depressed. Cavey says school was a constant struggle. Then, on the last day of kindergarten, her daughter was finally diagnosed with ADHD.
She was prescribed medication, talked with doctors and qualified for special help at school — a great relief to the family. And when her daughter (who's now about to start eighth grade) was entering first grade, the teachers were better prepared to help her.
"She would have teachers that could tell when she was just overwhelmed," Cavey says. "And when something was really hard ... they'd say, 'Let's go get a drink of water,' and they'd walk down the hall. They could get her back and focused and on task."
Children on Medicaid are supposed to get that same sort of supervised care and help, Whitley says.
"Our mission is to make sure that beneficiaries have access to quality services," he says.
Tanya E. Froehlich, a developmental and behavioral pediatrician with Cincinnati Children's Hospital, says it's particularly crucial to closely monitor any child who is on medication. It can take months, she says, to determine the exact right dose — one that achieves results without side effects.
"We start at the lowest possible dose, and in many cases that low dose isn't effective," she says, "and we have to titrate upward for them to get benefit." If children don't see a practitioner soon after diagnosis and at least a couple of times more that year, those medication adjustments don't happen, she adds.
Side effects of ADHD medication can include changes in appetite and sleep or headaches, stomachaches and changes in mood, such as irritability or anxiety. In rare cases, the medicines can increase blood pressure or heart rate.
The OIG report didn't explore why children don't receive timely care.
The other unfortunate finding of the report, says Froehlich, is that a significant number of children prescribed ADHD medication did not also receive behavioral therapy. When kids are treated with both medication and therapy, they have "the very best outcomes," she says. They go on to have fewer conflicts with parents, exhibit fewer oppositional behaviors and less aggression, have fewer academic difficulties and display better social skills.
For children in primary school, behavioral therapy tends to focus on the family, teaching adults how to set structured routines for the child — such as consistent wake-up times, consistent mealtimes and consistent bedtimes. Family behavioral therapy teaches parents and caregivers how to reward children for successes, such as getting their homework done on time.
"Maybe they have 15 minutes of special time with their parents as a reward," Froehlich says, or maybe they get to be the one who chooses the TV show that they watch together.
As the children get older, the therapy helps teach them organizational skills, such as using a planner and a timer to help stay on top of homework.
In a written statement that accompanied the formal OIG report, Medicaid officials say they agree with the report's recommendations — that Medicaid develop strategies for more effective treatment for children who have ADHD and that it help states provide better and more timely follow-up care.
RACHEL MARTIN, HOST:
The majority of children enrolled in the federal Medicaid program are not getting appropriate treatment for attention deficit hyperactivity disorder, or ADHD. That's the conclusion of a new report from a federal watchdog agency. NPR's Patti Neighmond has more.
PATTI NEIGHMOND, BYLINE: Elizabeth Cavey knows just how important it is to get a child with ADHD diagnosed and treated as soon as possible. For her daughter, the first year of school - kindergarten - was a disaster.
ELIZABETH CAVEY: She was constantly being reprimanded and forced to sit still. And she's a bright child, but she kept falling further and further behind in learning letters and language because she could not concentrate.
NEIGHMOND: The pressure and stress took its toll. Her 5-year-old daughter became anxious and depressed. It was a constant struggle, says Cavey. But on the last day of kindergarten, her daughter finally was diagnosed with ADHD. She was prescribed medication and qualified for special help at school.
CAVEY: She would have teachers that they could tell when she was just overwhelmed and when something was really hard. And they'd say, you know what? Let's go get a drink of water. And they'd walk down the hall, and they could get her back and focused.
NEIGHMOND: But that kind of success is not the case for the majority of children enrolled in Medicaid, according to Brian Whitley with the Office of Inspector General.
BRIAN WHITLEY: Nationwide, over 500,000 Medicaid-enrolled children newly prescribed an ADHD medication did not receive any timely follow-up care.
NEIGHMOND: They didn't see a health care provider for a month after being prescribed medication. And 1 in 5 of those children didn't see a health care provider for nearly a year.
WHITLEY: That's a long time to be on powerful medications without a practitioner checking for side effects or even how well the medication is working.
NEIGHMOND: Pediatrician Tanya Froehlich with Cincinnati Children's Hospital Medical Center says it can take months to determine the exact right dose of medication.
TANYA FROEHLICH: We start at the lowest possible dose. In many cases, that low dose isn't effective, and we have to titrate upward for them to get benefit.
NEIGHMOND: And if children aren't followed up soon after diagnosis, those medication adjustments just don't happen.
FROEHLICH: And so we're not giving them the most effective treatment possible.
NEIGHMOND: And side effects of the medication may go unnoticed.
FROEHLICH: Effects on the appetite as well as effects on sleep, headaches, stomachaches, changes in mood, irritability, anxiety.
NEIGHMOND: Ideally, Froehlich says, children should be seen soon after being prescribed medication and then another two times throughout the year. The OIG report didn't explore why children don't receive timely care. It could be parents or doctors not following through.
The OIG report also finds nearly half the children prescribed ADHD medication did not receive behavioral therapy, which is a shame, says Froehlich, because when kids are treated with both medication and therapy, they have the very best outcomes.
FROEHLICH: And we see things like decreased parent-child conflict, decreased oppositional behaviors and aggression, fewer academic difficulties and improved social skills when kids are getting that combination of medication plus behavioral therapy.
NEIGHMOND: For younger kids, behavior therapy focuses on the family, helping set structured routines - consistent wakeup times, mealtimes and bedtimes. It teaches how to reward children for successes, like getting homework done on time.
FROEHLICH: Maybe they have 15 minutes of special time with their parents as a reward. Or maybe they get to be the one who chooses the TV show that they watch together.
NEIGHMOND: When kids get older, therapy focuses on them - teaching organizational skills, like using a planner and timer to get homework done. In a written statement, Medicaid officials say they agree with the recommendations to develop strategies for more effective treatment for children with ADHD, as well as helping states provide better, more timely follow-up care.
Patti Neighmond, NPR News. Transcript provided by NPR, Copyright NPR.