Written Testimony for the Subcommittee on Human Resources
Committee on Ways and Means
United States House of Representatives
May 29, 2014
William Grimm, Senior Counsel
National Center for Youth Law
405 14th Street, 15th Floor
Oakland, CA 94612-2701
Phone: (510) 835-8098, Ext. 3016
Chairman Reichert, Ranking Member Doggett, and members of the Subcommittee, thank you for extending this opportunity to submit a statement for the record regarding the May 29, 2014 hearing on Caring for Our Kids: Are We Overmedicating Children in Foster Care?
The National Center for Youth Law (NCYL) is a non-profit organization based in Oakland, California. NCYL’s staff of attorneys and advocates works to ensure that public agencies created to protect and care for children do so effectively.
Several years ago, at the request of concerned foster parents and other child advocates, our office began investigating conditions in the Clark County (Las Vegas), Nevada foster care system. We discovered, among other problems, that foster children were often given psychotropic medications with little or no scrutiny of the drugs’ risks, benefits, or appropriateness.[i] Foster parents provided us with examples of the adverse and, in at least one instance, almost fatal effects of this unfettered, unmonitored administration of antipsychotics, antidepressants, stimulants, and other medications upon children in their care. One young boy, who entered care in November 2005, was continuously on multiple psychotropic medications for more than three and a half years, including multiple antipsychotic drugs, until he was hospitalized with a life-threatening condition as a result of the drugs’ toxicity.
NCYL also works with public health nurses, psychiatrists, pharmacologists and others to reduce the inappropriate use of psychotropic medications among children in California’s foster care system. With support from Hedge Funds Care/Help for Children, we are studying state approaches to addressing the problems of “too much, too many, and too young” identified in the General Accounting Office’s 2011 Report[ii] and at this and other Congressional hearings. Since 2012, we have worked with California’s Departments of Social Services (CDSS) and Health Care Services (DHCS) trying to get the state to develop protocols for our children in care. I am a member of the Expert Panel appointed to advise CDSS and DHCS on the Quality Improvement Project for Psychotropic Medications and Foster Children. We have encountered obstacles in that work and we have reason to believe similar obstacles exist in many other states. We welcome this opportunity to recommend Congressional and Executive Branch initiatives to address these obstacles and improve the safety and well-being of our children in foster care.
Federal Leadership Lags, But it Can Catch Up
In 2011 Congress enacted and President Obama signed the Child and Family Services Improvement and Innovation Act (P.L. 112-34)requiring states to develop and implement protocols for the appropriate use and monitoring of psychotropic drugs administered to foster children. A brief flurry of activity among federal agencies followed. In November 2011, the Administration for Children and Families (ACF), Centers for Medicare and Medicaid (CMS), and Substance Abuse and Mental Health Services Administration (SAMHSA) issued a joint letter promising collaboration among their agencies. In April 2012, the Children’s Bureau distributed a comprehensive Information Memorandum to state child welfare agencies in which it summarized some of the issues to be addressed and existing practice guidelines states could consult in devising protocols. [iii] In August 2012, HHS convened Because Minds Matter, a conference in Washington, D.C., bringing together representatives from state child welfare, health, and mental health agencies to hear from experts and begin a discussion about solutions.
The federal agencies, however, have not sustained the leadership promised by these initial responses. ACF’s attempts to monitor states’ progress in fulfilling the psychotropic medication mandates of the Child and Family Services Improvement and Innovation Act through its review of the Annual Progress and Services Reports (APSRs) is inadequate. [iv] ACF has signed off on California’s APSRs for the last two years despite little progress being demonstrated. There are few other federal efforts to curb the misuse of psychotropic drugs in foster care. Meanwhile, the promised improvements in the care and treatment of our nation’s foster children envisioned by the Child and Family Services Improvement and Innovation Act remain largely unfulfilled.
What is needed now are additional actions by Congress and the federal agencies. That action needs to be far more comprehensive in scale than has been attempted so far. There must be a greater sense of urgency driving responses to the concerns voiced about our foster children’s health and safety. This year’s Congressional hearing is the third such hearing since 2008. Since 2011, the General Accountability Office has issued several reports, each echoing many of the same concerns voiced at the Congressional hearing in 2008.[v]
Evidence that the job can be done is apparent from the success in a parallel effort on behalf of another vulnerable segment of our population – elderly residents in nursing homes. Federal agencies should move swiftly to adapt this approach on behalf of foster children.
A Promising Model for Action: CMS’s Nursing Home Initiative
Dr. Phillip McGraw told this Committee “these [psychotropic] drugs are too often misused as ‘chemical straight jackets.’ This is a haphazard attempt to simply control and suppress undesirable behavior, rather than treat, nurture and develop these treasured young people.” We agree.
Recent data from a Nine-State Summary of Medicaid claims indicates an increase in the percentage of foster children/adolescents being administered antipsychotic drugs.[vi] A similar trend exists among the thousands of foster children in California being given one or more psychotropic medications.[vii] In stark contrast with the rate at which antipsychotics are administered to foster children, FDA approved uses for antipsychotics with children and adolescents are extremely limited. [viii] Antipsychotics use among foster children is largely “off-label” and used to control behaviors.
Our nation’s response to another at-risk and vulnerable group’s overmedication is in stark contrast with our failure to effectively address the same concerns about our foster children. This population – the elderly in nursing homes – is also dependent upon others for their care and safety and “chemical restraints” are a common “treatment” administered to them. Federal and state responses to concerns about the health and safety of these senior citizens far exceeds the scope of actions taken to address similar concerns for our nation’s foster children.
In 2011 HHS’ Office of the Inspector General (OIG) reported an alarmingly high use of psychotropic medications – atypical antipsychotics medications – among elderly nursing home residents. The OIG findings eerily mimic the findings of the 2011 GAO Report on foster children. One in four nursing home residents were receiving at least one antipsychotic medication. OIG also found that 83% of atypical antipsychotic drug claims were for elderly nursing home residents who had not been diagnosed with a condition for which antipsychotic medication was approved by the FDA. Many nursing home residents were receiving too high a dose and remained on the medications for too long.[ix]
Many of the same reasons for the high use of antipsychotic medications to sedate nursing home residents likely explain the high use of similar psychotropic medications used to address the behaviors of foster children in group homes:
- Lack of staff training
- Low staff levels with high numbers of residents to professionally-trained staff
- Few relevant therapeutic interventions
- A culture of prescribing due to a perception that medications are effective in treating behaviors and that non-pharmacological interventions may be less effective or too time-consuming to be part of standard care.
In early 2012 CMS began a series of activities to address concerns from relatives and other advocates for the elderly and identified in the OIG Report. CMS established a National Partnership to Improve Dementia Care in Nursing Homes (Partnership). It established an initial goal of reducing antipsychotic medication use in nursing home residents by 15% by December 31, 2012. Nursing homes with high rates of antipsychotic use were identified and contacted by professional organizations. CMS began conducting regular (monthly) conference calls with states, regions and state coalitions. CMS publicly reported the incidence of antipsychotic medication use for each nursing home. CMS also contracted with university-based researchers to conduct a descriptive study to better understand the reasons for use of antipsychotic medications in nursing home residents. The initial focus of the Partnership on reducing the use of antipsychotic medications was expanded to include improving comprehensive approaches to the psychosocial and behavioral health needs of elderly persons in the nation’s nursing homes.
Our foster children are entitled to no less care and treatment than that afforded to our elderly. The urgency with which CMS approached the overmedication of nursing home residents, the scope of the actions taken on behalf of the elderly and the maintenance, evaluation, and adjustment of those efforts should be brought to bear with equal urgency and commitment to our children in foster care. HHS and CMS, taking the lessons learned from the Partnership, should move forward with similar actions on behalf of our foster children.
Data-Sharing: A Prerequisite to Development of Protocols for Psychotropic Medications
In the Child Welfare Services Improvement and Innovation Act of 2011Congress assigned child welfare agencies the responsibility to create protocols for the appropriate use and monitoring of psychotropic medications administered to children and youth in foster care.
Although child welfare agencies are required to include information about the child’s medications as part of the child’s case plan,[x] current law does not require states to aggregate the data or to make it available for analyses. In California, each foster child theoretically has a Health and Education Passport but for many children these Passports are incomplete and inaccurate and, even if they were reliable, there is no system for aggregating the Passport data. Consequently, our child welfare agency is dependent upon another agency for information about psychotropic medication prescriptions filled for children in foster care.[xi] This creates problems and those problems are not unique to California.
While child welfare agencies have responsibility for the psychotropic medication protocols, in many if not most states, it is the state’s Medicaid agency that has the data concerning prescription drugs, including psychotropic medications, is maintained by the state Medicaid agency. Additional data about mental health services may be housed in the Medicaid agency, some separate division, or an entirely different agency.
Although Title IV-B of the Social Security Act[xii] requires that child welfare agencies develop their Health Care Oversight Plan in coordination with the State Medicaid agency, there is no separate provision we are aware of that requires the State Medicaid agency to provide data or other assistance to the child welfare agency.[xiii] In some states these two functions may be under the umbrella of one agency but in California, as is likely the scenario elsewhere, they are not.
The starting point for any state’s protocol should be the collection and analysis of relevant data. Information about foster children who are receiving psychotropic drugs and the drugs themselves is critical because
- Data can help separate what you think is happening from what is really happening
- Data will establish a baseline so you can measure improvement
- Data will help avoid putting solutions in place that will not solve the problem.
Despite the importance of data, in California we know very little about the psychotropic medications our foster children are being given. The GAO’s 2011 Report focused on, among other things, data about “too many” and “too much” – children on multiple psychotropic medications and dosages beyond the maximum for their age. [xiv] In California we still do not know how many of our foster children are on multiple drugs of what classes and what doses. The little data available indicates a significant increase in the rate at which foster children are prescribed antipsychotics. This is particularly concerning given the very limited uses/diagnoses for which these drugs have FDA approval for use with children and the alarming risks and side effects associated with their use in children.[xv]
California has about fifteen percent of the nation’s children in foster care.[xvi] During the last several years, our state’s foster care population has dropped sharply.[xvii] But at the same time, there has not been an accompanying drop in the rate of authorizations for administering psychotropic medications to foster children and youth.[xviii]
Several states have contracted with university-based researchers to pull together and analyze data to identify potentially inappropriate uses of psychotropic medications and to establish baseline measures. In 2009 the Kansas Department of Social & Rehabilitation Services published Medicaid Children’s Focused Study: Prescribing Patterns of Psychotropic Drugs Among Child Medicaid Beneficiaries in the State of Kansas (Kansas Study).[xix] More recently, Colorado’s Medicaid agency partnered with the Skaggs School of Pharmacy and Pharmaceutical Sciences to issue a report Psychotropic Medication Use in Colorado Medicaid Children and Adolescents: A Focus on Foster Care Children. Both studies illustrate the necessity of accessing Medicaid data to address concerns about psychotropic drugs.
Last year, Congress enacted the Uninterrupted Scholars Act (USA Act) (Public Law 112-278) and President Obama signed it into law on January 14, 2013. The USA Act amended the Family Educational Rights and Privacy Act (FERPA): to permit educational agencies and institutions to disclose a student’s education records, without parental consent, to a caseworker or other representative of a State or local child welfare agency or tribal organization authorized to access a student’s case plan ”when such agency or organization is legally responsible, in accordance with State or tribal law, for the care and protection of the student.[xx]
An amendment of Title XIX of the Social Security Act, similar to last year’s amendment to FERPA by the USA Act, one that explicitly allows or requires the state’s Medicaid agency to share pharmacy benefits claims data for children in foster care with the child welfare agency, would promote data sharing and contribute to the health and safety of our foster children.
Congress and HHS have set forth the types of data to be collected by state child welfare systems as a condition of receiving Title IV-B and IV-E funds.[xxi]
The Foster Care Independence Act of 1999 (P. L. 106-169) provided States with flexible funding to carry out programs that assist youth in making the transition from foster care to self-sufficiency. The law and regulations promulgated under the Act also require States to collect information on each youth who receives independent living services and to collect demographic and outcome information on certain youth in foster care whom the State will follow over time. The information being collected about these youth includes limited questions about health insurance access and coverage.
HHS should provide guidance and define the basic data elements that should be collected and provided to the child welfare agency as part of each state’s process for developing and implementing a plan for ongoing oversight and coordination of health care services for foster children required by Title IV-B, including data about the psychotropic medications.
Based on the GAO study, analyses conducted by states, and the standards recommended earlier this year by the National Committee for Quality Assurance, we suggest the following data be included at minimum:
- Children and adolescents administered antipsychotic medications
- Children five years old and younger administered antipsychotic(s)
- Children and adolescents prescribed high dose of antipsychotics
- Children an adolescents prescribed two or more antipsychotics
- Children and adolescents prescribed three or more psychotropic drugs
- Children and adolescents with more than 20 day gap in prescription supply
- Children and adolescents for whom baseline metabolic tests are completed before administration of psychotropic medications
- Children and adolescents for whom metabolic tests are completed periodically while being administered psychotropic medications
- Length of time children are administered continuous psychotropic medications;
- Mental health diagnosis of children receiving psychotropic medication,
- Service utilization – i.e. average number of days between first prescription fill date and receipt of community-based services
Monitoring of psychotropic medications for children in foster care includes two aspects. First, those states that have adopted standards or guidelines for the appropriate use of psychotropic medications identify children for whom the drug regimen appears to be outside those parameters. States have set up a variety of mechanisms to detect, monitor, and respond to those incidents. In some jurisdictions, a red flag triggers a prior authorization requirement.[xxii] In others, it leads to a consultation with a psychiatric or pharmacology expert.[xxiii]
The second aspect of monitoring ensures that for those children who are administered one or more psychotropic medications, the safety and efficacy of the medications is periodically assessed through follow-up visits, measuring weight, body mass index, and lab work. We believe this type of monitoring has received less attention and consequently foster children are at risk for the adverse effects of drugs remaining undetected or timely addressed. A recent study completed by Dr. Julie Zito, who testified before Congress about these issues in 2008, confirms that children in foster care remain on psychotropic medications longer than other children.[xxiv]
New Jersey and Connecticut have adopted comprehensive protocols for the monitoring of children for whom psychotropic medications are prescribed. We recommend that HHS include these monitoring protocols as part of standards for minimally acceptable monitoring required under federal law.
Academic Detailing Demonstration Grants
We agree with the testimony of First Focus Vice-President Houshyar that “the pharmaceutical industry has skillfully marketed prescription medications to the Medicaid program.” Settlements and judgments in numerous lawsuits brought against pharmaceutical companies confirm the nature and extent of those marketing practices.
Academic detailing is a university or non-commercial-based educational outreach program. It seeks to improve the prescribing of targeted drugs or classes of drugs that is consistent with medical evidence from randomized controlled clinical trials. Persons involved in the provision of academic detailing do not have any financial links to the pharmaceutical industry.
In 2008 the Council of the District of Columbia enacted the SafeRX Amendment Act establishing “an evidence-based Pharmaceutical Education Program.” The Program was established to provide Medicaid prescribers with high-quality, evidence-based, cost-effective information regarding the effectiveness and safety of pharmaceutical products.”
We recommend that HHS support the development and implementation of models of academic detailing specific to the prescribing of psychotropic medications to children on Medicaid, including our children in foster care. If current law authorizing demonstration grants or other potential source within CMS or ACF does not permit such an allocation, we recommend that HHS seek the appropriate Congressional authorization.
The National Center for Youth Law wishes to thank the Committee for this opportunity to make recommendations on the further steps Congress and the Executive Branch should take to ensure the health and safety of our children in foster care. We believe the recommendations made here today will help to ensure that the promises made to our foster children as part of the Child and Family Services Improvement and Innovation Act will be kept. Our organization would welcome the opportunity to expand upon the recommendations made here. Thank you.[i] In 2011 the Nevada legislature enacted a major overhaul of the laws applicable to psychotropic medications administered to foster children. 2011 Nev. Stat. 2669 now codified at NRS §432B.4681 et seq. [ii] General Accounting Office, Foster Children: HHS Guidance Could Help States Improve Oversight of Psychotropic Prescriptions, Report #GAO-12-270T (December 2011) [iii] Administration for Children & Families, U.S. Dep’t of Health and Human Services, Information Memorandum: Oversight of Psychotropic Medication for Children in Foster Care; Title IV-B Health Care Oversight & Coordination Plan, ACYF-CB-IM-12-03 (April 11, 2012). [iv] See, e.g., Administration for Children & Families, U.S. Dep’t of Health and Human Services, Program Instruction: Title IV-B Annual Progress & Services Report, ACYF-CB-PI-13-04 (April 10, 2013). [v] General Accountability Office, FOSTER CHILDREN: HHS Guidance Could Help States Improve Oversight of Psychotropic Prescriptions, Report #GAO-12-270T (December 2011); General Accountability Office, FOSTER CHILDREN: Additional Federal Guidance Could Help States Better Plan for Oversight of Psychotropic Medications Administered by Managed-Care Organizations, Report #GAO-14-362 (April 28, 2014); General Accountability Office, HHS Could Provide Additional Guidance to States Regarding Psychotropic Medications, GAO #14-651T (May 2014)(Statement of Stephen Lord, Managing Director, Forensic Audits and Investigative Service Team) [vi] Medicaid Medical Directors Learning Network, Nine-State Summary: Antipsychotic Medication Use in Medicaid Children and Adolescents at http://chsr.rutgers.edu/MMDLNAPKIDS/summary_9state.pdf [vii] Policy Lab, Children’s Hospital. Philadelphia Children, Foster Care: Antipsychotic Medication Use 2002-2009, at http://policylab.chop.edu/data-visualization/children-foster-care-antipsychotic-medication-use-2002-2009 [viii] J.N. Harrison, F. Cluxton-Keller, & D. Gross, Antipsychotic Medication Prescribing Trends in Children & Adolescents, 26 J. Pediatric Health Care 139 (2012)(Noting FDA approved ATP use in children & adolescents for childhood schizophrenia, bipolar disorder, and behavioral symptoms associated with autistic disorder) [ix] Karen Tritz, Director CMS Division of Nursing Homes, Michele Laughman, CMS Health Insurance Specialist, & Alice Bonner, Consultant, Northeastern University, Report on the CMS Partnership to Improve Dementia Care in Nursing Homes: Q4 2011-Q1 2014 (April 1, 2014) [x] 42 U.S.C. §675 (1). The term “case plan” means a written document which includes at least the following: …(c) The health and education records of the child, including the most recent information available regarding …(vi) the child’s medications… [xi] California’s child welfare database does collect information on authorizations for psychotropic medications, but this data is limited to the date of the authorization, race, age, gender of the child and the county and type of placement in which the child is residing. Needell, B., Webster, D., Armijo, M., Lee, S., Dawson, W., Magruder, J., Exel, M., Cuccaro-Alamin, S., Putnam-Hornstein, E., Sandoval, A., Yee, H., Mason, F., Benton, C., Lou, C., Peng, C., King, B., & Lawson, J. (2014). CCWIP reports. Retrieved 6/12/2014, from University of California at Berkeley California Child Welfare Indicators Project website. URL: <http://cssr.berkeley.edu/ucb_childwelfare> [xii] 42 U.S.C. 622 (b)(15)(A) [xiii] Congress clarified that by giving the state child welfare agency responsibility for the health care oversight and coordination plan it did not mean to reduce the State Medicaid agency’s duty to provide health care services to foster children, 42 U.S.C. 675 (b)(15)(B) (“subparagraph (A) shall not be construed to reduce or limit the responsibility of the State agency responsible for administering the State plan approved under title XIX [42 USCS §§ 1396 et seq.] to administer and provide care and services for children with respect to whom services are provided under the State plan developed pursuant to this subpart; [xiv] General Accountability Office, Foster Children: HHS Guidance Could Help States Improve Oversight of Psychotropic Prescriptions, Report #GAO-12-270T (December 2011) [xv] V.J. Fedorowicz & E. Fombonne, Metabolic Side Effects of Atypical Antipsychotics in Children: A Literature Review, 19 J. Psychopharmacology 533 (2005) [xvi] AFCARS Report, at http://www.acf.hhs.gov/sites/default/files/cb/afcarsreport20.pdf; http://cssr.berkeley.edu/ucb_childwelfare/PIT.aspx [xvii] http://cssr.berkeley.edu/ucb_childwelfare/PIT.aspx (Between January 1, 2004 and January 1, 2013, California’s foster care population dropped from 83,000 to 56,000). [xviii] http://cssr.berkeley.edu/ucb%5Fchildwelfare/CDSS_5F.aspx [xix] Becci Akin, Stephanie Bryson, & Terry Moore, School of Social Welfare at the University of Kansas, Medicaid Children’s Focused Study: Prescribing Patterns of Psychotropic Drugs Among Child Medicaid Beneficiaries in the State of Kansas (August 2009) at https://keys.org/kureports/finalreportdrugs.pdf [xx] Letter to Chief State School Officers from Kathleen M. Styles, Chief Privacy Officer and Michael K. Yudin, acing Assistant Secretary, Office of Special Education and Rehabilitative Programs (May 27, 2014), at
http://www2.ed.gov/policy/gen/guid/fpco/ferpa/uninterrupted-scholars-act-guidance.pdf[xxi] 42 U.S.C. §679; 45 CFR 1355, Appendix A [xxii] E.g., Arkansas Department of Human Services, Division of Medical Services, Pharmacy Unit, Memorandum to Arkansas Medicaid Prescribers (March 15, 2012) (requires signed informed consent form for any antipsychotic dispensed to all children under 18 years of age). [xxiii] E.g., Washington’s Partnership Access Line (PAL) is a telephone based child mental health consultation system funded by the state legislature, at http://www.palforkids.org/. [xxiv] M. Burcu, J.M. Zito, A. Ibe, & D.J. Safer, Atypical Antipsychotic Use Among Medicaid-Insured Children and Adolescents: Duration, Safety, and Monitoring Implications, 24 J. Child & Adolescent Psychopharmacology 112 (2014)