Reforming Foster Care Psychotropic Meds: A Cautionary Note

On April 11, 2012, the Federal Administration on Children, Youth and Families issued information memorandum ACYF-CB-IM-12-03, the subject matter being one of: “Promoting the Safe, Appropriate, and Effective Use of Psychotropic Medication for Children in Foster Care.”

The memo notes “a steady rise in the use of medication to address children’s emotional and behavioral problems over the last decade, even among pre-schoolers.” The memo notes also that “published studies consistently reveal even higher rates of use for children involved in child welfare than in the general population, with usage rates between 13 and 52 percent.”

A meeting entitled “Because Minds Matter: Collaborating to Strengthen Management of Psychotropic Medication Use for Children and Youth in Foster Care” was set to be held this August, in order to:

  • Provide an opportunity for State leaders to enhance existing cross-system efforts to ensure appropriate use of psychotropic medications;
  • Showcase collaborative projects and initiatives at State- and local-levels;
  • Offer state-of-the-art information on cross-system approaches for improving mental health and well-being outcomes for children and their families;
  • Allow participants to strategize to address the mental health and trauma-related needs of children in foster care with evidence-based and evidence-informed interventions; and
  • Facilitate each State’s development of action steps to improve upon and implement their existing health care oversight and coordination plans.

AN INVITATION ONLY EVENT

To be sure, I wasn’t invited to attend the event. Neither were any of the other advocates that I spoke with over the phone. As a recent announcement on the Child Welfare Information Gateway explains:

Attendance at this meeting will be by invitation only. State leaders with direct responsibility for child welfare, Medicaid, and mental health will convene as teams and work together to develop action steps for enhancing oversight and monitoring of psychotropic medications for children in foster care. As members of State teams, participants will have the opportunity to share ideas, learn from experts, and work through obstacles together to improve increase collaborative supports for children and youth. This will be a working meeting, so attendance is strictly limited to invited members of State teams.

As explained in a joint letter bearing an HHS letterhead dated November 23, 2011, addressed to all state directors, the affair was collaboratively hosted by the Administration for Children and Families, Substance Abuse and Mental Health Services Administration, and Centers for Medicare and Medicaid Services.

The letter outlines steps that the three organizations are taking to support effective management of prescription medications for children in foster care. For its part, the letter explains, “CMS is working with partners to disseminate a report summarizing findings from a 16-State consortium of State Medicaid Medical Directors to develop best practices for the use of psychotropic medications among children in Medicaid.”

GETTING SERIOUS

The two-day event, hosted at the posh Grand Hyatt Washington — a facility that proudly boasts of indoor shops, a choice of on-premises eateries, and a piano seemingly afloat on an island surrounded by water – offered a busy itinerary, according to the Program Booklet. Featured speakers included Clare Anderson, Deputy Commissioner at ACF; George Sheldon, the former head of Florida’s DCF, now Acting Assistant Secretary for ACF; Pamela Hyde, Administrator of the SAMHSA; John O’Brien, Senior Policy Analyst, CMS; Bryan Samuels, former director of Illinois’ DCFS, now the Commissioner of ACF; Charles Wilson, Senior Director of the Chadwick Center for Children and Families and the Sam and Rose Stein Endowed Chair in Child Protection at Rady Children’s Hospital-San Diego; and Eugene Griffin, JD, PhD, of Northwestern University.

Among the workshops: “Overview of State Approaches to Oversight and Monitoring of Psychotropic Medications,” and Getting off to a Great Start: How states come together, frame the issue, and begin to build an approach to oversight and monitoring of psychotropic medications in child welfare.”

“The meeting provided state and federal leaders, as well as child health care and Medicaid experts, with an opportunity to improve and strengthen oversight and monitoring of mind-altering medications prescribed to children in our nation’s foster care system. Prior to the meeting, each state was required to submit detailed steps and plans for ensuring that the prescription drug use of foster care children is appropriate and properly monitored,” Senator Tom Carper explains in a recent press release.

It was at Carper’s urging that the Government Accountability Office studied the problem, producing report GAO-12-201. Sen. Carper explains the report as having found “that thousands of children, including infants, were prescribed psychotropic drugs in dosages that far exceed levels recommended by the Food and Drug Administration and medical literature. The GAO has further reported that nearly one in three states identified the overuse of psychotropic medications in their foster care populations as one of the most pressing issues facing the child welfare system nationwide.”

The GAO report became the centerpiece in a congressional hearing that was held last December, and presided over by Sen. Carper. Gregory D. Kutz, Director Forensic Audits and Investigative Service with the GAO explained during his prepared testimony, that Congress had passed the Child and Family Services Improvement and Innovation Act, in September 2011, requiring states that apply for certain federal child welfare grants to establish protocols for the appropriate use and monitoring of psychotropic drugs prescribed to foster children.

The GAO report found that in Texas, foster children were 53 times more likely to be prescribed five or more psychiatric medications at the same time than non-foster children. In Massachusetts, they were 19 times more likely to be so prescribed. In Michigan, the number was 15 times. It was 13 times in Oregon. And in Florida, foster children were nearly four times as likely to be given five or more psychotropic medications at the same time compared to non-foster children.

RESISTANCE TO CHANGE

In a landmark suit filed against the Illinois Department of Children and Family Services, the American Civil Liberties Union in effect blamed the child welfare agency for much of the actual child abuse in the state. One of the terms of the Consent Decree was that DCFS convene a reform panel by January of 1992 specifically “to review and make recommendations regarding its policies and procedures concerning (i) the use of restraint and seclusion on children in care and (ii) the use of behavior controlling drugs including a prohibition on the use of such medication for the punishment of children, the convenience of caretakers or as a substitute for programming for children’s needs.”

Twelve years later, the federally-mandated Illinois Child and Family Services Review, released in January 2004, noted that “some stakeholders expressed concern that there is a large number of children in foster care who are on psychotropic medications and that due to a shortage of psychiatric services, DCFS may rely too heavily on psychotropic medication as a mental health service.”

Ohio’s efforts at reform began in 2000, when Ohio Legal Rights Services staff visited four facilities to review medical records. The diagnoses of children, and the medications that were dispensed the day before their visit were examined, and a time sampling was conducted to determine the percentage of children in the facility who were on prescribed medication at the time of the visit. The results were astounding.

  • The four facilities housed a total of 96 children. Of these 96 children, 93 were on psychotropic medications.
  • The average age across all facilities was 13.6 years.
  • The children ranged from age 5 to 18 years.
  • In one facility, nearly half of the children were diagnosed with a Bipolar Disorder while in another facility nearly half were diagnosed with an Explosive Disorder.
  • Some children, as young as 10 years, were receiving 6 different psychotropic medications.

Writing in the Brooklyn Journal of International Law, Angela Olivia Burton details an investigation in Ohio that found that nearly 40,000 children on Medicaid were taking drugs for anxiety, depression, delusions, hyperactivity and violent behavior as of July 2004, and that Ohio spent over $65 million on the drugs for children in 2004. The report also found that doctors prescribed sedatives and mood-altering medications for nearly 700 babies and toddlers who were on Medicaid.

Cynthia A. Fontanella, Ph.D. of the College of Social Work at Ohio State University released a report entitled Trends in Antipsychotic Medication Use Among Ohio Medicaid Youth in Foster Care in February 2012. In terms of the foster care population, the medications prescribed, and the payments by Medicaid, she demonstrates that little has changed since.

It wasn’t until 2004 that the issue hit the national spotlight, with the release of Texas State Comptroller Carole Keeton Strayhorn’s landmark study Forgotten Children: A Special Report on the Texas Foster Care System.

Strayhorn followed the money, and two years later issued a pair of reports respectively entitled Texas Health Care Claims Study: Special Report on Foster Children and Review and Analysis of the Medicaid and Public Assistance Fraud Oversight Task Force.

When Strayhorn’s reports were issued, the Internet was no longer in its infancy, and child and family advocates were empowered to follow the money in their own respective states.  Many felt that true reform was just around the corner.

FINAL CAUTIONARY NOTE

On a final cautionary note, let us visit the Sunshine State. In June 2002, the Statewide Advocacy Council, after a year-long investigation into the use of prescribed psychotropic drugs in the state’s foster care program, issued an Orange Item Report. The watchdog agency reviewed over 1,000 records, uncovering a number of systemic problems, including incomplete records; information that was not easy to locate; information about multiple children frequently commingled in a single file; information about unrelated foster care children being found in some case files; and that files were often poorly organized.

The Council thereafter sought to investigate the use of psychotropic drugs on foster children, however the Department of Children and Families responded by steadfastly refusing to hand over the data. The press was quick to respond, with The Palm Beach Post reporting that DCF had stonewalled the watchdogs, the South Florida Sun Sentinel saying that DCF was stifling reform, while the St. Petersburg Times, Fort Meyer’s News-Press, and the Miami Herald reported that DCF was engaged in retaliation against the Advocacy Council for having published its Orange Item Report

Florida Legal Services, Inc., a nonprofit organization that provides legal assistance to the poor, became involved following the issuance of the Orange Report, lobbying extensively to bring about reforms on the legislative level.

In July 2003, the Council released its Red Item Report: Psychotropic Drug Use in Foster Care, which revealed that “more than 9,500 children in Florida on Medicaid had been treated with psychotropic drugs in the year 2000.”

By April of 2004, officials at the Department of Children and Families were viewing the uproar as a possible public relations nightmare. In an April 27 e-mail addressed to treatment providers across the state, DCF Assistant General Counsel Peggy Sanford wrote: “This is a potential 60 Minutes and Dateline story.”

Florida Legal Services continued to lobby, as the Legal Docket on its web site as of July of 2004 explained: “For the past few years the legislature has filed bills dealing with the consent process for foster youth to receive psychotropic medication. The medical lobby has attempted to remove protections for these youth, while FLS has lobbied to ensure the court functioned in loco parentis as to foster children, in determining whether a child should be medicated as recommended.”

Litigation continued, as DCF hid behind the cloak of confidentiality. The trial court had ordered DCF to hand over the information, however DCF appealed. As the case wound its way through the courts, the Children and Youth Law Clinic at the University of Miami School of Law, together with the Center for Ethics and Public Service, and Florida’s Children First, filed a legal brief arguing that the Council’s independent oversight of DCF “would effectively stop in its tracks if DCF were able to assert confidentiality to shield its own policies and practices from public scrutiny by these and other independent state watchdog agencies.”

On October 29, 2004, the District Court of Appeal of Florida, Second District, ruled against DCF in DCFS v Florida Statewide Advocacy Council, upholding the order of the lower court.

In May of 2010, the Daytona Beach News Journal reported that: “A bill that would have ensured tighter controls on administering psychotropic drugs to foster children failed to pass this legislative session, but the head of the state Department of Children and Families is moving forward with rules he says will ensure children are safe.”

The bill stemmed from the findings of a work group that was formed following the death of a 7-year-old Gabriel Myers, who had been prescribed several mind-altering drugs. He hanged himself in his foster home in April of 2009.

Thereafter, DCF conceded that 26 percent of children in group homes or other institutional settings were being given mental-health drugs, compared to 21 percent of children in foster homes and 4 percent of children living with relatives. At that time, state Sen. Ronda Storms proposed a bill that would require caregivers for foster children to present a “compelling government interest,” and that medication is in the “child’s best interest.”

In May 2011, The Palm Beach Post reported that over a period of 24 months, DCF “bought 326,081 tablets of Seroquel, Abilify, Risperdal and other potent antipsychotic drugs, and poured them into jails and homes that can hold no more than 2,300 boys and girls on any given day. The medications can cause heart trouble and other serious health problems, and hadn’t been approved by the federal government as safe for use in children.”

The newspaper’s investigation also showed that, in 18 months, 17 current or former psychiatrists combined to accept $253,982 in speaker fees or free meals and travel from AstraZeneca, Pfizer and other makers of antipsychotic drugs. One doctor accepted nearly $129,000 between mid-2009 and the end of 2010.

As for the prospect of meaningful reform in Florida, The Palm Beach Post reported on February 9, 2012, that the passage of legislation that would provide greater controls over the prescription of psychotropic medications appeared to be bleak.

“Sen. Ronda Storms’ bill that would make it harder for doctors to put foster kids on mind-altering drugs passed another milestone in the Senate Thursday, but its future is bleak. The Senate Health Regulation Committee unanimously approved Storms’ measure (SB 1808) and sent it on its way to its final committee,” the Post reports.

“But the House has yet to hear a similar proposal and, with the 2012 session midpoint approaching, appears unlikely to budge.”

A PROMISING INITIATIVE

In April of this year, the Center for Health Care Strategies, in cooperation with the Annie E. Casey Foundation, selected five states for conducting a three-year quality improvement collaborative called Improving the Use of Psychotropic Medication among Children and Youth in Foster Care: A Quality Improvement Collaborative.

The lucky winners of the grants are the states of Illinois, New Jersey, New York, Oregon, Vermont, and Rhode Island.

Just as the representatives from child welfare, mental health, and Medicaid joined together on the federal level to implement reforms, the Center for Health Care Strategies envisions that each of the states will “convene a cross-agency team — including state Medicaid, child welfare, and behavioral health agencies — as well as families, youth, and providers, to develop and implement new approaches to psychotropic medication use for this child population.”

By now, the general public is acutely aware of these issues, and is demanding that something be done. Two congressional hearings have been held, and numerous studies have been issued. Diane Sawyers provided an in-depth look at the issue, as did 20/20. Among the more recent of the media reports is CNN’s report Study: Foster children prescribed more psychotropic drugs.

Now, the very movers and shakers in the child welfare industry have met behind closed doors to better build their “collaboratives.”

I remain cautiously optimistic that something may come of the more recent efforts, as one of the child welfare’s dirtiest little secrets is a secret no longer.