Witnesses at a recent Congressional committee hearing called for action to protect children in foster care from excessive psychotropic medication. NCYL believes it’s time to ask for specific actions such as those outlined in our written testimony.
Two prior hearings, in 2008 and 2010, preceded this year’s event, which was timed to coincide with the annual visit of foster youths to Congress. The 2010 hearing was followed by passage of remedial legislation, the Child and Family Services Improvement and Innovation Act (2011), which requires each state to report annually on its efforts to improve psychotropic medication practices with respect to foster children. Will legislation follow this year’s hearing? We hope so.
The May 29 hearing did not lack for dramatic stories illustrating the need for action. Dawna Zender Hovenier, a former foster youth from Bellingham, Washington, told of the seven months during which she was required to take drugs that made her feel “like a zombie.” When she aged out of the foster care system on her 18th birthday, she could not find a psychiatrist willing to monitor her gradual withdrawal from drugs which, she testified, had produced “intense withdrawal symptoms . . . [and] can cause seizures resulting in death if discontinued hastily.” Read her complete testimony here.
It seemed to us that the testimony of the Committee’s four witnesses needed an additional element: a proposal for specific action. Bill Grimm, a senior attorney at National Center for Youth Law, provided such a proposal in NCYL’s written testimony:
1. The federal government should adapt the CMS Nursing Home Initiative to the foster care context.
A model for federal action is ready and available: the CMS (Centers for Medicare and Medicaid Services) Nursing Home Initiative. After a 2011 report on excessive use of antipsychotic drugs to sedate and restrain nursing home residents, CMS began a National Partnership to Improve Dementia Care in Nursing Homes—a project with specific action components, reporting requirements, and numerical goals for medication reduction. That model has demonstrated some success. It should be adapted, with improvements, and used in the foster care context.
2. The federal government should encourage data sharing.
Administrators know the maxim “what is measured gets done” and its corollary: what is not measured often falls by the wayside. Two kinds of obstacles currently impede efforts to measure psychotropic medication practices in foster care.
One obstacle is a lack of standard measures. Key terms like “polypharmacy” have different meanings in different agencies. Some agencies gather data on dosages; others only record drug names. Just as national commerce benefits from national standards for weights and measures, coping with psychoactive drugs will require a uniform system of measurement.
A second obstacle is lack of cooperation between agencies. State and local child welfare agencies have information on foster children: when they come into care, when they leave, where they are placed, what brought them into care, their behavioral problems, and more. Typically it is a different agency, the state or local health care agency, that pays the bills for psychotropic medications. The health care agency knows what prescriptions were filled for each child, when, and for what quantities of which drugs.
To measure the successes and shortcomings of policy initiatives, data from the two kinds of agencies must be melded. That melding is impeded less by technical issues than by traditional organizational boundaries. Those traditions are so firmly set that it may take federal action to change them.
“HHS,” Grimm testified, “should . . . define the basic data elements that should be collected and provided [by the state Medicaid agency] to the child welfare agency as part of each state’s process for . . . oversight . . . of health care services for foster children required by Title IV-B, including data about . . . psychotropic medications.”
Grimm went on to propose 11 specific data elements that the federal government should require.
3. Monitoring psychotropic medications
Standards for medication are little more than ink on paper unless adherence to the standards is monitored. We have bookkeepers and auditors to monitor adherence to standards for spending government funds. We need the equivalent for government-authorized medication. Some states have “red flags” that trigger a review or consultation with a psychiatrist or pharmacologist when powerful psychotropic medications are requested. The federal government should promote good monitoring practices and should require expert review of medication proposals that exceed specified ranges. Pressures in the direction of excessive prescribing are pervasive. Monitoring is essential to contain those pressures.
“Monitoring” of drug safety has a second meaning. It, too, is important. A number of psychotropic drugs, the antipsychotics especially, tend to produce serious adverse effects such as neurological damage (movement disorders), rapid weight gain to the point of serious obesity, and others. Individual children differ greatly in their susceptibility to these adverse effects, so good medical practice requires monitoring of each child’s physiology at baseline (before drug administration) and at regular intervals so long as the child is exposed to the medication. Professional associations are agreed on the need for individual monitoring, but it seldom is required by law or regulation, and cost-cutting pressures have made it the exception, not the rule, for foster children. Federal standards are needed to remedy this situation.
For more information
The oral testimony from the hearing, on May 29, 2014, in Washington, DC, before the Subcommittee on Human Resources of the House of Representatives Committee on Ways and Means is available here.
Grimm’s and NYCL’s complete written testimony is available here.