Advances in Self-Directed Care

Judith A. Cook, PhD

Professor & Director University of Illinois at Chicago Center on Mental Health Services Research & Policy NYAPRS 29 th Annual Conference Kerhonkson, NY, September 16, 2011

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 Disabilities Blind Industries & Services Of Maryland (BISM) Department of Labor, Licensing, and Regulation (DLLR) Mental Hygiene Administration (MHA) Local/State Colleges & Universities MAP S-MD Core Servic e Agenc y (CSA) Medicaid Dept. of Social Services (DSS) Developmental Disabilities Administration (DDA) 4 Regional DDA Offices Consumer Community Rehab. Program Division Of Rehabilitation Services (DORS) 6 DORS Regions Local Education Agency (LEA) Governor’s Workforce Investment Board Local Workforce Investment Boards/ One-Stops

Can the U.S. MH System Be Reformed?

Key Elements Missing From Current U.S. MH System

• • • Accountability Choice Free market economy (overregulation, lack of competition) • • Consumer sovereignty Personal responsibility

What is Self-Directed Care?

Funds ordinarily paid to service provider agencies are controlled by service recipients 1.

2.

3.

4.

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

• • • •

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

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 .”

Who Runs U.S. MH SDC Programs?

• • • • • • FloridaSDC: a non-profit MH provider agency statewide MH advocacy organization Alliance on Mental Illness) & a (National 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 1 st , now a provider organization Iowa SDC: operated by a MH provider agency Maryland SDC: operated by a peer-run program

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)

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 years only - $3000/year for 2 Iowa Program goal - $2,000 to pursue a single recovery Pennsylvania Program service utilization among heavy users ($6,000+ per year) – based on prior 2 years of Maryland SDC – around $3,000 per year with no cap & tailored to participants’ individual needs

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

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 2 nd year  Consumer satisfaction was significantly higher among those served in SDC  Incidences of fraudulent behavior were low  Hiring (& firing) friends/family members not problematic Foster, Brown et al.,

Health Affairs,

2003)

3 U.S. Mental Health SDC Programs

• • • Florida – 1 st successful pilot program now replicated in 2 nd 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

FloridaSDC’s 2 Locations & Host

Circuit 4

Organizations

Circuit 20 Charlotte, Glades, Hendry, Nassau, Duval, Clay counties Lee, Collier counties Cathedral Foundation of Jacksonville Inc NAMI of Collier County

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 $

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

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)

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

Texas SDC Location & Host Organization

NorthSTAR Region North Texas Behavioral Health Authority

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

Characteristics of 206 SDC Study Participants SDC Participants (n=110) & Services as Usual (n=96)

Female Caucasian African American High School/GED Unmarried Annual income < $10,000 Schizophrenia spectrum disorder Bipolar disorder Major depressive disorder Ever treated overnight for MH Ever treated for substance use Physical condition/impairment Currently working See self holding job in next year Average age 66% 36% 41% 67% 86% 50% 18% 65% 17% 56% 49% 48% 12% 58% 41 years

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

Purchases Made by Participant

Purchase

Individual Therapy Psychiatrist Initial MH Assessment Physical Fitness Expenses Massage Therapy Tuition (12 hours) Books for School Debit Card Fees

Total cost of Purchase

$910.00 $332.50 $90.00 $273.34

$300.00

$250.00

$250.38

$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%)

As of May 2010, Types of Traditional Clinical Purchases Authorized

8% 4% 2%

Individual Therapy Psychiatrist

44% 10%

Groups

32%

Case Management Medication Mgmt Other

10%

As of May 2010, Types of Non Traditional Purchases Authorized

10% 6% 1% 12% 16% 30% 16%

Health/Fitness Transportation Communications/PC Clothing/Furniture Job/School Allow Card Emerency Rent/Utility Documents

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

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 Better 19% 74%  Would you recommend the SDC program to a friend?

 Not sure 3%  Yes 97%

SDC Participant Outcomes

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

PA SDC Location & Host Organization

Delaware County Mental Health Association of Southeastern Pennsylvania

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 – 90 th percentile Support brokers paid for out of participant budgets (1 st hours free) 4 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

• • • • • • • • • • •

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

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

“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

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/providerf ocus/new/archives/fall06/clinical/article1.asp

For more information, see http://www.cmhsrp.uic.edu/nrtc/default.asp