1. REHABILITATION RESEARCH AND TRAINING CENTER ON DEVELOPMENTAL DISABILITIES AND HEALTH DEPARTMENT OF DISABILITY AND HUMAN DEVELOPMENT UNIVERSITY OF ILLINOIS AT CHICAGO HTTP://WWW.RRTCADD.ORG/ MANAGED CARE LONG TERM SERVICES AND SUPPORTS FOR PEOPLE WITH INTELLECTUAL/DEVELOPMENTAL DISABILITIES (DD) TAMAR HELLER, PHD CHICAGO FORUM FOR JUSTICE IN HEALTH POLICY: PEOPLE WITH DD AND MANAGED CARE OCTOBER 30, 2014

2. DEMOGRAPHIC AND POLICY CONTEXT FOR PEOPLE WITH DD AND THEIR FAMILIES Longevity revolution Rebalancing from institutions to group homes and to supported living Increase in family support Increase in consumer direction Broader changes in state DD service systems toward managed care 2

3. PROJECTED POPULATION WITH I/DD 20102030Percent Change United States People with I/DD Age 65+* 241,600 428,72077% Total People with I/DD**4,600,3005,417,40018% 3 * Based on a prevalence rate of 6 per 1,000 **Based on a prevalence rate of 14.9 per 1,000 Sources: Larson, S. et al (2001) Prevalence of MR/DD from the 1994/1995 NHIS Disability Supplements, AJMR (106), 231-252. U.S. Bureau of the Census, The Older Population: 2010 (#C2010 BR-09) U.S. Bureau of the Census, Interim Population Projections: 2000 – 2030, Table 4.

5. State Total IDD Caregiving Families Families Supported by I/DD Agencies % of Families Supported UNITED STATES3,513,224467,95813% Source; Braddock et al, Coleman Institute and Department of Psychiatry, University of Colorado, 2012. 5 ESTIMATED NUMBER OF IDD CAREGIVING FAMILIES COMPARED TO FAMILIES SUPPORTED BY STATE IDD AGENCY FUNDS: 2011

6. Source:Braddock, Hemp, & Rizzolo, 2012 Where People Live: US, 2011

7. TRENDS IN POLICIES Shrinking of federal/state DD budgets -Great Recession (starting 2007) resulted in largest spending drops in 35 years -Weak recovery, 2013 budget lower (Braddock et al., 2012) Increasing residential waiting lists -Estimate of 115,059 (Larson et al., 2012 ) Greater use of supported and family living -Of 612,704 in out of home residential settings, 45% in 6 or fewer supported living -Family support funding increased every year, but decreased.03% 2009-2011 (Braddock et al, 2012)

8. REASONS GIVEN FOR MANAGED CARE Under fee-for-service, poor communication and coordination leads to reduced quality of care unnecessary costs Managed care can: -Coordinate health care and LTSS -Control costs -Rebalancing Financial incentives for Managed Care Organizations

9. MANAGED CARE AND DISABILITY Most states include children, pregnant women and adults without disabilities in Medicaid Managed Care Slow to include people with disabilities (10% of managed care enrollees) -Resistance from disability service providers -Resistance from advocates -Health plans not familiar with complex needs of people with disabilities -Difficult to set rates and assess risks

10. INTEGRATED CARE PROGRAM (ICP) EVALUATION IN ILLINOIS: IDD FINDINGS (FY11 TO FY13) Lower ER use in ICP No overall difference in health care appraisal in ICP Lower health care appraisal for those with physical disability-could be due to not being able to see the same doctor More unmet needs for racial ethnic minorities, physical and/or mental health disabilities PCPs less likely to take wishes of people with mental health disabilities into account

11. MANAGED CARE AND MLTSS

14. BENEFITS AND CONCERNS OF MLTSS

15. ROLE OF FAMILIES IN MLTSS Engagement in stakeholder meetings Supported decision-making for adult with I/DD if needed Advocating for services and supports Serving as personal support worker Planning for the future

16. PRINCIPLES FOR MLTSS (NATIONAL COUNCIL ON DISABILITIES, 2013) 1. Community Living 2. Personal Control 3. Employment 4. Support for Family Caregivers 5. Stakeholder Involvement 6. Cross-Disability, Lifespan Focus 7. Readiness Assessment and Phase-in Schedule 8. Provider Networks 9. Transitioning to Community- based Services 10.Competency and Expertise 11.Operational Responsibility and Oversight 12. Capitated Payment Systems 13. Continuous Innovation 14. Maintenance of Effort and Reinvesting Savings 15. Coordination of Services and Supports 16. Assistive Technology and Durable Medical Equipment 17. Quality Management 18. Civil Rights Compliance 19. Continuity of Care 20. Due Process 21.Grievances and Appeals

17. RECOMMENDATIONS FOR MLTSS Community Living -Institutional and community based in same plan -Savings used to expand access to HCB supports Personal Control -Person-centered practices, choice, and self-direction -Resource Allocation Decision Method, to determine effective means of providing LTSS (WI) -Tools and strategies to ensure person-centered and outcome-oriented planning approaches -Overly restrictive rules about nursing restrict choices -Training in managing personal support workers (e.g., Find, Choose, Keep DSPs)

18. RECOMMENDATIONS FOR MLTSS Support for Family Caregivers -Assistance to effectively support and advocate on behalf of people with I/DD - Allowed payment to family members -High parental satisfaction and well-being when sibling was support worker ( Heller et al., 2012) Stakeholder Involvement -Disability advocates fully engaged in designing, implementing, and monitoring MLTSS outcomes -Disability Advocates Advancing Our Health Care Rights collaborated with state Medicaid agency (MA)

19. RECOMMENDATIONS FOR MLTSS Coordination of Services and Supports -Health services coordinated with LTSS -Service coordinators independent of the MCO— keep existing care coordinators Assistive Technology and Durable Medical Equipment -Access to durable medical equipment and assistive technology

20. RECOMMENDATIONS FOR MLTSS Continuity of Care -Phase in schedule with a readiness assessment -Provider continuity; switching care plans if want Research and Evaluation -Research on best practices in LTTS -Better health and LTSS outcome measurements Education and Outreach -Education and outreach campaign to families, people with IDD and providers -Training and education to MCOs on person centered, self-directed planning

21. CONTACT US The contents of this presentation were developed under grants from the Department of Education, NIDRR grant numbers H133B130007 and H133B130034. However, those contents do not necessarily represent the policy of the Department of Education, and you should not assume endorsement by the Federal Government. Tamar Heller theller@uic.edu www.RRTCDD.org