Advances in Self-Directed Care

1. Advances in Self-Directed Care Judith A. Cook, PhD Professor & Director University of Illinois at Chicago Center on Mental Health Services Research & Policy NYAPRS 29th Annual Conference Kerhonkson, NY, September 16, 2011

2. Department of Disabilities MD Higher Ed. Comm. UM System Community College System Dept. Of Veteran Affairs Dept Of Human Resources (DHR) Dept of Health & Mental Hygiene (DHMH) MD State Dept Of Education (MSDE) Department of Labor, Licensing, and Regulation (DLLR) Blind Industries & Services Of Maryland (BISM) Mental Hygiene Administration (MHA) Developmental Disabilities Administration (DDA) Medicaid Division Of Rehabilitation Services (DORS) Governor’s Workforce Investment Board MAPS-MD Dept. of Social Services (DSS) 4 Regional DDA Offices 6 DORS Regions Local/State Colleges & Universities Local Workforce Investment Boards/ One-Stops Local Education Agency (LEA) Core Service Agency (CSA) Consumer Community Rehab. Program Can the U.S. MH System Be Reformed?

3. Key Elements Missing From Current U.S. MH System • Accountability • Choice • Free market economy (overregulation, lack of competition) • Consumer sovereignty • Personal responsibility

4. What is Self-Directed Care? Funds ordinarily paid to service provider agencies are controlled by service recipients • Participants develop person-centered service plans • They then create individual budgets allocating dollar amounts to achieve their plan’s goals • Staff called “brokers” are available to help people choose & purchase services & goods named in their budgets • Fiscal intermediary provides financial management services such as provider billing & payroll taxes

5. Underlying Values of SDC • Freedom of Choice – people pick their own services & hire/fire their own providers • Absence of Conflict of Interest – broker does not work for a provider, has no vested interest in what services or providers are used • Firewall Between SDC Components – ideally, the program “home,” fiscal intermediary, & providers are not organizationally related • Personal Responsibility – participant assumed to be able to make good choices & take responsibility for own recovery

6. SDC Promotes Recovery by Enhancing Choice & Responsibility From the U.S. New Freedom Commission on Mental Health Report (2003)… “… consumers and families will play a larger role in managing the funding for their services, treatments, and supports. Placing financial support increasingly under the management of consumers and families will enhance their choices. By allowing funding to follow consumers, incentives will shift toward a system of learning, self-monitoring & accountability.”

7. Who Runs U.S. MH SDC Programs? • FloridaSDC: a non-profit MH provider agency & a statewide MH advocacy organization (National Alliance on Mental Illness) • Texas SDC: regional behavioral health authority (non-service provider) operates the program • PA SDC: statewide MH advocacy organization (Mental Health American) • Oregon Empowerment Initiatives: an independent, peer-run, disability co-operative at 1st, now a provider organization • Iowa SDC: operated by a MH provider agency • Maryland SDC:operated by a peer-run program

8. How are Mental Health SDC Programs Funded? • State general revenue (local tax dollars) • State general revenue combined with Medicaid (federal health insurance) in some manner: • Add-on to Medicaid: Medicaid beneficiaries receive additional funds for SDC through 1) state MH dollars, 2) CMS Real Choice System Change Grants, 3) CMS Community Reinvestment Funds • Medicaid funding pooled with other funds such as: 1) state MH dollars, 2) MH Block Grant, 3) local funds (http://www.cmhsrp.uic.edu/download/sdsamhsaconfsentver3.pdf)

9. How Much $ is Available to Participants in Individual Budgets? Florida SDC – $3700/year for non-Medicaid beneficiaries; $1924/year for Medicaid TX SDC - $4000/year regardless of Medicaid status with up to $7000/year for heavy service utilizers Oregon Empowerment Initiatives - $3000/year for 2 years only Iowa Program - $2,000 to pursue a single recovery goal Pennsylvania Program – based on prior 2 years of service utilization among heavy users ($6,000+ per year) Maryland SDC – around $3,000 per year with no cap & tailored to participants’ individual needs

10. SDC is Cost Neutral • People’s individual budgets are set at levels no higher than the system’s current expenditures for traditional outpatient services • Use an average (e.g., average annual outpatient expenditure) • Individualized amount based on cost of participant’s recent outpatient tx • Provide different amounts based on Medicaid beneficiary status

11. How Well Does SDC work for other groups? • Randomized evaluation of “Cash & Counseling” programs (for people with developmental & physical disabilities & the elderly) • Outcomes of SDC participants were as good or better than regular fee-for-service (FFS) • SDC participants received more services than their FFS counterparts • Budget neutrality prevailed by end of 2nd year • Consumer satisfaction was significantly higher among those served in SDC • Incidences of fraudulent behavior were low • Hiring (& firing) friends/family members not problematicFoster, Brown et al., Health Affairs, 2003)

12. 3 U.S. Mental Health SDC Programs • Florida – 1st successful pilot program now replicated in 2nd region of the state • Texas – program designed through consensus building in a randomized controlled trial (RCT) • Pennsylvania – collaborative program being tested in an RCT Pennsylvania Texas Florida

13. FloridaSDC’s 2 Locations & Host Organizations Circuit 20 Charlotte, Glades, Hendry, Lee, Collier counties Circuit 4 Nassau, Duval, Clay counties NAMI of Collier County Cathedral Foundation of Jacksonville Inc

14. How FloridaSDC Works • A person without Medicaid can spend up to $3194/year; Medicaid beneficiaries have $1673/year to use for goods & services Medicaid doesn’t cover • Program director approves participant budgets • People must be willing to leave their current services in order to begin SDC • Brokers (called Life Coaches) are paid for out of participants’ individual budgets • SDC is available as an ongoing program • Funded 100% with state general revenue $

15. FloridaSDC Participants • Most (79%) are Caucasian • Majority (62%) are women • Nearly all are living independently & single • Just over half (52%) are Medicaid beneficiaries • 17% are age 30-39; 31% 40-49 years; 34% 50-59 years; 13% 60+ years • 24% w schizophrenia; 61% mood disorders; 16% other • 20% less than high school education; 51% high school; 19% college degree

16. Florida SDC Outcomes & Costs • Pretest/Posttest Study of original FloridaSDC Program for people with psychiatric disabilities • Significantly higher number of days in the community in the year after joining the program • Significantly higher global functioning in the year after • Only 16% hospitalized (5% involuntarily) • At follow-up, 33% held paid employment, 19% receiving job skills training, 16% in volunteer activities, 7% enrolled in postsecondary education, & 3% in GED classes. • Of approximately $58,000 in participant expenditures, 47% spent on traditional psychiatric services, 13% on service substitutions for traditional care, 29% on tangible goods, 8% on uncovered medical care, and 3% on transportation. (Cook, Russell et al., Psychiatric Services, 2008)

17. FL SDC Program – Non-Traditional Purchases • Weight loss program • Massage therapy • Art classes • Gym memberships • Computer & software • Glasses • Rent & utilities for limited time • Craft supplies • Camera • Smoking cessation

18. Texas SDC Location & Host Organization NorthSTAR Region North Texas Behavioral Health Authority

19. How Texas SDC Works • Participants have $4,000/year with up to $7,000/year available for those with high service needs, regardless of Medicaid eligibility • People must be willing to leave their current services in order to begin SDC • Brokers (called SDC Advisors) provided free of charge • Program director approves participant budgets • Must be willing to participate in UIC randomized study • Braided funding: Medicaid, state general revenue, Mental Health Block Grant; state transformation grant dollars

20. Characteristics of 206 SDC Study Participants SDC Participants (n=110) & Services as Usual (n=96) Female 66% Caucasian 36% African American 41% High School/GED 67% Unmarried 86% Annual income < $10,000 50% Schizophrenia spectrum disorder 18% Bipolar disorder 65% Major depressive disorder 17% Ever treated overnight for MH 56% Ever treated for substance use 49% Physical condition/impairment 48% Currently working 12% See self holding job in next year 58% Average age 41 years

21. Example of One TX SDC Participant’s Recovery Goals • Find a prescribing psychiatrist with whom I feel comfortable • Participate in supportive psychotherapy to enhance my ability to cope • Improve my health & physical fitness • Better manage my feelings of depression • Lower my stress level • Prepare myself for a job

22. Purchases Made by Participant PurchaseTotal cost of Purchase Individual Therapy $910.00 Psychiatrist $332.50 Initial MH Assessment $90.00 Physical Fitness Expenses $273.34 Massage Therapy $300.00 Tuition (12 hours) $250.00 Books for School $250.38 Debit Card Fees $3.95 Total Non-Traditional Goods & Services = $1,092.67 (45%) Total Traditional Services = $1,332.50 (55%) Grand Total Purchases = $2,425.17 (100%)

23. As of May 2010, Types of Traditional Clinical Purchases Authorized 2% 4% 8% 44% 10% 32%

24. As of May 2010, Types of Non-Traditional Purchases Authorized 6% 1% 10% 30% 10% 12% 16% 16%

25. Allow Card – TX & PA SDC • A type of debit card • Decreases stigma from using vouchers or checks with program name on them • Increases participant familiarity with use of debit/credit cards • Allows participant responsibility for funds • Allows program to restrict purchases (no alcohol, guns, pornography, etc.) • Allows program staff to monitor expenses on a daily basis

26. TX SDC Participant Satisfaction Survey • 42 participants with 3+ month tenure; 31 completed the survey for a 74% response rate with no refusals • How would you rate the SDC program? • Poor/Fair 10% • Good/Excellent 90% • How do the MH services you’re buying now compare to those you got before SDC? • Worse 7% • About the same 19% • Better 74% • Would you recommend the SDC program to a friend? • Not sure 3% • Yes 97%

27. SDC Participant Outcomes Living in own home or apartment 84% Working for pay 26% In school/taking a class 19% Psychiatric hospitalization 6% Physical health now vs. before SDC Worse 10% About the same 35% Better 55%

28. PA SDC Location & Host Organization Delaware County Mental Health Association of Southeastern Pennsylvania

29. How PA SDC Program Works • Delaware County residents enrolled in Magellan managed care program • Individualized budget based on person’s annual average expenditure over past 24 months • Targets high service users, 60th – 90th percentile • Support brokers paid for out of participant budgets (1st 4 hours free) • Participants begin program using existing services • Uses Medicaid & Community Reinvestment $ • Magellan approves participant budgets • $1,000 limit on non-traditional purchases • Randomized in University of PA study

30. PA Program – Non-Traditional Purchases • Back Rent • Electric Bill • Exercise Clothes • Gym Memberships • Computer Software to write poetry • Glasses • Ear, Nose Throat Specialist (apnea study) • Car Repair • Books for School • Phillies (baseball) Tickets • Lawnmower

31. PA: Breakdown of “Freedom Fund”* Purchases • 36% Physical health • 20% Housing • 19% Work/meaningful activities • 19% Education • 4% Mental wellness • 2% Social activities * non-traditional, funded by Community Reinvestment dollars

32. “Ownership of one’s life…is a physical, mental, spiritual, and responsible connection or reconnection to life for an individual who seeks his or her own destiny.”Nancy Fudge, Florida SDC Participant

33. Informational Materials About Self-Directed Care SDC Fact Sheet http://www.cmhsrp.uic.edu/download/SDCResearchFactSheet.pdf Funding Options in the U.S. http://www.cmhsrp.uic.edu/download/sdsamhsaconfsentver3.pdf Planning Guide for Starting an SDC Program http://www.bazelon.org/issues/mentalhealth/publications/DriversSeat.pdf Managed Care & SDC http://www.magellanprovider.com/MHS/MGL/about/whats_new/providerfocus/new/archives/fall06/clinical/article1.asp For more information, see http://www.cmhsrp.uic.edu/nrtc/default.asp