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2  Many of the children I advocated for were taking some sort of psychotropic medication  Many of them were on multiple psychotropics  Many of them were on antipsychotics, often without a diagnosis that justified it  Once on these medications, it was hard to get them off 2

3 Over 80% of children in foster care have developmental, emotional, or behavioral problems 1 Emotional problems in foster children are strongly related to their history of deprivation, neglect and abuse, and the lack of security and permanence in their lives 1 1 Child Welfare League of America 3

4  Children on Medicaid are prescribed antipsychotics at four times the rate of privately insured children 1  Among Medicaid children, 12.4% of foster children received antipsychotics, compared to 1.4% of non-foster children 1  Foster youth are prescribed psychotropic medications at nine times the rate of other Medicaid youth 2 1 Wall Street Journal, August 11, Crystal, S; Olfson, M; Huang, C; Pincus, H; & Gerhard, T. (2009). Broadened use of atypical antipsychotics: Safety, effectiveness, and policy challenges. Health Affairs. 28(5):770. 4

5  Between 22-35% of foster youth are prescribed psychotropic medication 1,2  Foster youth have a much higher rate of poly-pharmacy 1  Foster youth have a much higher rate of being on 2 or more psychotropic medications from the same class 1 1 Zito et al, Pediatrics Crystal, S; Olfson, M; Huang, C; Pincus, H; & Gerhard, T. (2009). Broadened use of atypical antipsychotics: Safety, effectiveness, and policy challenges. Health Affairs. 28(5):770. 5

6 29% of Medicaid children treated for mental health conditions receive psychotropic medications. 5.4% received ≥ 4 psychotropic medications. Of those receiving AAPs, 4.2% receive ≥ 2 AAPs. 0.60% of preschool children between 2-5 years of age receive an AAP. Polypharmacy rate is 2-3 times greater among children in foster care. Source: Cynthia Fontanella, Clinical Profile of Children with SED (Ohio Medicaid Data ) Rates for children continuously enrolled in Medicaid.

7 $1 million investment by the Ohio Office of Health Transformation and Department of Medicaid Partnership with BEACON (Best Evidence for Advancing Childhealth in Ohio NOW!) The three-year goals: Increase timely access to safe and effective psychotropic medications and other treatments Improve pediatric health outcomes Reduce potential adverse effects

8 BEACON Statewide Stakeholder Meetings/All Pilot Communities Facilitators: QI Vendor and Clinical QI Leader Schedule: June 2013, Sept 2014, Nov 2015 BEACON Statewide Stakeholder Meetings/All Pilot Communities Facilitators: QI Vendor and Clinical QI Leader Schedule: June 2013, Sept 2014, Nov 2015 State Steering Committee (N = 25) Clinical Advisory Panel (N= 17) Pilot Community Chairs (N =3) Facilitator: QI Vendor and Clinical QI Leader Meeting Schedule: Bi-Monthly, Quarterly State Steering Committee (N = 25) Clinical Advisory Panel (N= 17) Pilot Community Chairs (N =3) Facilitator: QI Vendor and Clinical QI Leader Meeting Schedule: Bi-Monthly, Quarterly Central Community Steering Committee Clinical and QI Facilitators Meeting Schedule: Quarterly meetings beginning in August 2013 Chair: Dr. Jonathan Thackeray Central Community Steering Committee Clinical and QI Facilitators Meeting Schedule: Quarterly meetings beginning in August 2013 Chair: Dr. Jonathan Thackeray Northeast Community Steering Committee Clinical and QI Facilitators Meeting Schedule: Quarterly meetings beginning in August 2013 Chair: Dr. Steven Jewell Northeast Community Steering Committee Clinical and QI Facilitators Meeting Schedule: Quarterly meetings beginning in August 2013 Chair: Dr. Steven Jewell Southwest Community Steering Committee Clinical and QI Facilitators Meeting Schedule: Quarterly meetings beginning in August 2013 Chair: Dr. Rick Smith Southwest Community Steering Committee Clinical and QI Facilitators Meeting Schedule: Quarterly meetings beginning in August 2013 Chair: Dr. Rick Smith

9  Psychotropic—Medication used in the treatment of mental illness  Atypical AntiPsychotic (AAP)—2nd generation of antipsychotic medications (e.g. Risperdal, Abilify) which have a lower incidence of serious side effects than 1 st generation (e.g. Haldol, Thorazine). Approved for use in: Adolescents with schizophrenia Adolescents with Bipolar Irritability associated with autism (school age & above) 9

10  Antipsychotic medications in children less than 6 years of age  Two or more antipsychotics at the same time  Four or more psychotropic medications in youth < 18 years of age 25% reduction in the use of

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12 Shared decision making toolkitParent’s guide to youth mental healthPsychotropic medication fact sheet Inattention, hyperactivity, and impulsivity fact sheets and resources Disruptive behavior and aggression fact sheets and resources Moodiness and irritability fact sheets and resources

13 ‣Tools to empower consumers to actively participate in the shared decision making process ‣Preparing for Mental Health Visit Questions ‣Personal Decision Guide ‣Information Sharing Checklist ‣Medication Side Effects Watch List ‣Video for parents, caregiver and youth ` ‣Training module for workers in utilizing the tools with parents/caregivers/youth ‣Fact sheets for parents/caregivers/youth

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18 Issues beyond the scope of Minds Matter 18

19  Medicating for behavior problems that stem from abuse, neglect or other trauma  Insufficient knowledge of child’s traumatic social history  Demands by foster parents, schools and other stakeholders  Reimbursement, time pressures and shortages of healthcare providers 19

20  Medication “quick fix” for problems more suited for psychosocial treatments  No clearly designated adult to monitor and consent to treatment  Reluctance to question a doctor’s medication recommendations  Large pharmaceutical companies encouraging off-label prescribing 20

21  Is child on an excessive number of medications? Four or more psychotropics Two or more antipsychotics  Are medications being prescribed “off-label”? Antipsychotics for other than psychosis, bipolar or autism Antipsychotics under age of 6 years Child’s diagnoses do not warrant medication  Are antipsychotics being prescribed by other than a child psychiatrist? 21

22  Is child exhibiting side effects?  Is child being medicated for behaviors attributable to trauma, neglect, abuse, bad placement  Does older child know risks & benefits, and assent to taking medications?  Is noncompliance likely (e.g. due to lack of knowledge or assent; side effects; older child making decisions based on peers or internet research)? 22

23  Make sure the prescribing provider knows the child’s psychosocial history, especially trauma, neglect, abuse, placement problems/changes  Have a general knowledge of medications, i.e. names, classes, approved uses (see handout)  Don’t be afraid to question why a child is on a medication  Engage other stakeholders in the shared decision-making process (provider, foster parents, child, etc.)  Utilize the Minds Matter toolkit! 23

24  Creating a “portable medical record” that follows the foster child intact through changes in placements, doctors, schools, etc  Creating a system of monitoring that “red flags” a foster child who is either inappropriately or over-medicated  Ensuring that all foster children receive a thorough mental health evaluation and behavioral therapy before they are medicated 24

25 “What would you do if this was your child?” 25

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27  Custodial Agency  Court Orders  Voluntary Cases  Kinship, Foster and Adoptive Families  Emancipated youth/young adults  Post Adoption Services (PASSS) 27

28  Piloted Minds Matter with Permanency Team (adoption and permanency workers)  Presented information to county cluster, area public mental health agencies, and Juvenile Court staff  Trained agency foster families  Trained all agency caseworkers, supervisors and managers  Developed policy related to informed consent and authorization of psychotropic medications as required by ODJFS 28

29  Custodial Agency Role  Great feedback from pilot participants  Concern from foster parents, probation officers and treatment providers regarding youth voice and choice  Role of youth  Be alert for developmental functioning, cognitive abilities and other factors  Provider Engagement 29

30  Custodial agency must provide authorization and consent for medications for children/youth  Engaging birth parents/caregivers  Importance of Informed consent  Use of for support for medication authorization and documentationwww.ohiomindsmatter.org 30

31  Content is accessible to most youth, ages 14+  Engaging youth to be informed consumers  Role modeling interactions  Preparation for appointments  Independent living services  Enhancing value of face to face visits  “It’s not about you, without you.”  Fact versus Fantasy 31

32  Lack of consistent provider/placement/sharing of information  Adults uncomfortable with informed consent with youth  Provider shift in practice  Youth fear of side effects  Lack of education for caregivers and others related to impact of trauma on children in substitute care  Provider capacity 32

33  Enhance understanding of medication and reasons for medication  Provide resources  Prepare for appointments  Feedback has been very positive  Need support to do the “work”  Love the resource sheets  Monitor for worries that need addressed with providers  SUPPORT, SUPPORT, SUPPORT 33

34  Education and Information  Advocacy  Normalize Informed Consent  Making good use of time  Obtaining needed information for consent/authorization 34

35  Getting buy-in  Education and Information  Importance of informed consent  Informing of process/procedure 35

36  Spread the word!  Use advocacy, education and information when working with PCSA, consumers and birth families  Download forms/tools and provide web address 36

37 Thanks for your commitment to children and their families! Johanna Pearce 37