1. NATIONAL CORE INDICATORS DATA FOR SYSTEMS CHANGE USE OF MEDICATIONS TO ADDRESS MOOD, ANXIETY, PSYCHOSIS AND BEHAVIOR AND STATE EFFORTS TO ADDRESS MARCH 29, 2013 A Collaboration of State Members, NASDDDS & HSRI

2.  Overview of National Core Indicators  NCI Data Sources  NCI Data on Utilization of Medication for Anxiety, Mood disorders, Behavior challenges and Psychotic disorders  NCI Findings and Recommendations on Medication Utilization  Significant State Efforts to Address Overuse of Psychotropic Medications  State Activities to Monitor and Reduce Unnecessary Medications Agenda

3. Overview of NCI

4. National Core Indicators “NCI”  NCI is a voluntary effort by public developmental disabilities agencies to measure and track systemic performance.  Collaboration began in 1997  Coordinated by HSRI and NASDDDS  Currently 35 states participate plus 23 sub-state entities.  NCI was awarded a contract from the Administration on Intellectual and Developmental Disabilities (AIDD) with goal to increase participation to all 50 states and District of Columbia within 5 years.

5. NCI Goals  Establish a nationally recognized set of performance and outcome indicators for DD service systems  Develop and maintain reliable data collection methods and tools  Report state comparisons and national benchmarks of system-level performance

6. What is an “Indicator”?  A standard measure used across states to assess the outcomes of services provided to individuals and families.  Indicators address key areas of concern including employment, rights, service planning, community inclusion, choice, and health and safety.  Indicators and data collection instruments are reviewed regularly to update and reflect best practice in service delivery.

7. NCI Data Sources and Reports Adult Survey Family Survey Guardian Survey Systems Level Data

8. NCI Data Sources  Adult Consumer Survey  In-person conversation with a sample of adults receiving services to gather information about their experiences  Keyed to important person-centered outcomes that measure system-level indicators related to: employment, choice, relationships, case management, inclusion, health, etc  Adult Family, Child Family, and Family/Guardian Surveys  Mail surveys – separate sample from Adult Consumer Survey  Other state system data: Mortality, Staff Stability

9. NCI Reporting & Resources NCI website is a public data source for:  Annual national reports  Annual state reports  Publications: Data used by researchers for journal articles  NCI Data Briefs: Medications, Employment Outcomes, Autism, Dual Diagnosis, Living Arrangement, etc.  Webinars: Managed Care, Interviewer Training  Chart function for customized data analysis http://www.nationalcoreindicators.org/

10. Ways States Use NCI Data  CMS Waiver Assurance Evidence Reports  Quality Assurance and Improvement  State by State Comparisons  Assist with Community Transition  DD Councils  Reports to State Legislatures

11.  Demographic differences  What medications are taken for  Health differences NCI Medication Data Brief: Findings

12. Source of Information  Adult Consumer Survey  Background Section  “Does the person take medications to address”:  Mood disorder  Anxiety  Psychotic disorder  Behavior

13. Who takes these medications?  Slightly older  Slightly less racially diverse  Less likely to live with parents or relatives  Less likely to be diagnosed with profound level of ID  Less likely to be diagnosed with cerebral palsy and Down syndrome  Less likely to have a physical disability  More likely to be white  More likely to live in group homes  More likely to be diagnosed with mild level of ID  More likely to be diagnosed with Autism Spectrum Disorder

14. Residence Type and Medications

15. Other Disabilities

16. Takes Medications to Address  53% of people with IDD receiving services are taking medications for at least 1 of these conditions:  mood disorders  anxiety  behavior challenges  psychotic disorders  Most common condition medications are taken for is mood disorders (38%).  14% of those taking at least one medication are taking them for all 4 conditions.

17. Takes Medications to Address  88% of those with a co-occurring psychiatric diagnosis were taking medications for mood, anxiety or psychotic disorders.  However, 30% of people without a psychiatric diagnosis were also taking medications for mood, anxiety or psychotic disorders.

18. What Health Differences Exist? Those who take at least one medication are:  Less likely to be in very good or excellent health  More likely to use tobacco products  More likely to be obese / less likely to be of normal weight

19. Overuse of Psychotropic Medications: Not just a DD service system concern  Mental Health Aging Service System Initiatives  Courts are involved in ensuring due process protections for people recommended to take certain medications. Advance Directives for medication consent now are used.  Aging Service System Initiatives  In aging services, Massachusetts nursing homes are monitored by state licensing agency for overuse of these kinds of medications.  Children using Medicaid & Foster Care  GAO 2012 report found that 18% of foster children were taking psychotropic medications. Utilization varied widely by the child’s living arrangement.  1.3 % of children in Medicaid took antipsychotic medications, that is twice the rate for privately insured children (0.5%). Children's Mental Health: Concerns Remain about Appropriate Services for Children in Medicaid and Foster Care. GAO-13-15, December 10. http://www.gao.gov/products/GAO-13-15http://www.gao.gov/products/GAO-13-15

20.  Massachusetts  Georgia  Missouri State Presentations

21. DD Service System Initiatives  Statute, policies and procedures in many states affirm that people receiving services cannot be chemically restrained, or prescribed medication that has an impact on behavior, without first conducting an evaluation to determine if there are medical causes for the behavior.  Some states require positive behavior supports be implemented prior to use of medications.  Human Rights Councils review restrictive practices and rights violations, including under what circumstance people can be prescribed multiple psychotropic medications.  Annual service planning allows for review of all treatment regimens and their continued efficacy.

22. Massachusetts Dept. of Developmental Services 3 Tier Approach  DDS concerned about poly-pharmacy, co-occurring medical/psychiatric/behavioral issues; aging population; limited number of practitioners knowledgeable about DD issues  Established a Statewide Medication Review Committee to bring together physicians, psychiatrists, behavioral psychologists, psycho-pharmacologist, neurologist, and nurses  Approaches issue of over-utilization of medications on 3 levels focusing on patterns and trends as well as individual reviews  Individual Case Review  Targeted Outreach to clinicians utilizing multiple medications based upon an analysis of Medicaid billing data  Broad Outreach and education to clinicians regarding “Consensus Guidelines

23. Massachusetts Dept. of Developmental Services Review Process for Individual Cases  Referrers submit complete package of documentation so that Committee Members can read in advance  All family, staff, clinicians involved are encouraged to come to meeting  Committee sends recommendations to DDS Area Office for distribution to involved parties  Committee may facilitate additional referrals to specialists, and follow up with treating community PCP and psycho- pharmacologist  Committee follows up in 90 days to determine status and next steps

24. Massachusetts Dept. of Developmental Services Preliminary Lessons Learned from Individual Case Reviews  Important to stress consultative nature of committee so that it encourages referrals  Individuals referred to committee typically present with multiple issues in addition to poly-pharmacy which may be “tip of the iceberg”  Individuals facing declining health status; outcomes may focus on quality of life issues  Individuals often present with effects of long term utilization of psychotropic medications, which affects individuals with ID differently than general population  Physicians, however well meaning, tend to add medications when an individual is experiencing behavioral or other issues  Physicians try to be responsive to family and or direct support staff who may be having significant challenges with supporting an individual which sometimes leads to increasing medications  Extremely productive to have clinicians from multiple disciplines; enables better coordination and problem solving

25. Massachusetts Dept. of Developmental Services Next Steps  Further refinement of referral package  Broader outreach to DDS community to encourage more referrals  Change of name of committee  More in-depth analysis of prescriber practices utilizing Medicaid data  Development of more systemic outreach efforts to community clinicians  Initiation of evaluation component of both process and outcomes of Medication Committee Reviews

26. Georgia Dept. of Behavioral Health and Developmental Disabilities Psychotropic & Anti-epileptic Medications Study  Purpose of study  Olmstead Plan  Study participants  Data collected and points in time  Analysis plan  Anticipated action from study findings

27. Missouri Division of Developmental Disabilities  Identification of Concerns and Development of Strategies  NCI data – ensure accuracy  Cross –analysis with Medicaid Claims  Cross- analysis with HIPS  Established threshold for local identifiers as a result of discussion with Medical Director and Chief Behavior Analyst.

28. Missouri Division of Developmental Disabilities  Educating and Implementing Strategies  Used national and regional data to present at each Regional Office/ SOP to further educate staff and stakeholders of identified concerns.  Region specific data was prepared for each question related to medication and behavior supports.

29. Missouri Division of Developmental Disabilities  Next Steps :  Using established threshold, continue to identify individuals quarterly and forward to respective Regional Office teams for individualized review.  Statewide data will be compiled to establish benchmarks for comparison of improvement with current strategies.  Continue to monitor data through current systems and share findings with stakeholders for continued improvement.  Currently working to develop a standardized Developmental Disabilities Medication Administration curriculum, with a component specifically addressing psychotropic medications.  Development of a best practice guide regarding the use of psychotropic medications –currently in development

30. For more information  NCI website: http://www.nationalcoreindicators.orghttp://www.nationalcoreindicators.org  NASDDDS: Mary Lee Fay, Director of NCI, MLFay@nasddds.orgMLFay@nasddds.org Charles Moseley, Associate Executive Director, cmoseley@nasddds.orgcmoseley@nasddds.org  HSRI: Val Bradley, President, vbradley@hsri.orgvbradley@hsri.org Sarah Taub, Director of NCI, staub@hsri.orgstaub@hsri.org Julie Bershadsky, Research Associate, jbershadsky@hsri.orgjbershadsky@hsri.org Josh Engler, NCI Project Coordinator, jengler@hsri.orgjengler@hsri.org