Vidhya Alakeson 2006/7 Harkness Fellow in Healthcare Policy

1. Is self-direction a way of creating a more patient-centred healthcare system? Lessons from self-direction in the US public mental health system Vidhya Alakeson 2006/7 Harkness Fellow in Healthcare Policy ASPE/ Department of Health and Human Services

2. What is self-direction? • Individuals have direct control of a budget with which to purchase services and supports to meet their needs, including goods and services not covered by the traditional system. • Not another form of cash assistance: • Purchases must be related to needs and goals identified in an individual’s plan • Some items are prohibited eg. alcohol, cigarettes, debt repayment • Not Health Savings Accounts by a different name: • Budget based on need not on income or ability to save. • Reassessment occurs when needs change • Support services provided • Acute services are not included

3. Self-direction addresses the dimensions of choice required for personalisation Choice of provider for elective procedures Who Choice of treatment and services What SELF-DIRECTED CARE Booking hospital appointment times When Supply-side diversity eg. NHS Walk-In Centres Where

4. Self-direction in mental health in the US • Self-direction is being used in Medicaid home and community based waiver services for elderly, physically disabled and intellectually disabled • Strong evidence base of positive impacts based on Cash and Counseling evaluation1 • FL, MD, TX, PA, MI, IA, OR – piloting programmes for serious and persistent mental illness (SPMI) • In some states, self-direction in mental health encompasses clinical and long term supports. • Robert Wood Johnson Foundation (2006) Choosing Independence: An Overview of the Cash and Counseling model of self-directed personal assistance services

5. Who participates in self-directed care in mental health? • Individuals served by the public mental health system • Majority Medicaid, Medicare, VA eligible. Some uninsured • Majority unemployed, SSI recipients • Live independently. Not in residential facilities or group homes • More likely to be female, white and better educated than non-self-directed mental health population

6. Research objectives • Based on self-directed programmes for SPMI in three case study states – Florida, Michigan, Oregon: • To identify why consumers opt for self-direction and what they value about the approach • To identify the choices that self-directed consumers make • To assess how programme design influences informed decision making and equity • To assess the impact of self-direction on service use, outcomes and costs • To assess the significance of the approach to creating more personalised healthcare in the UK

7. Methodology • Site visits to Florida, Michigan, Oregon • Structured interviews with self-directed consumers, programme staff and state officials about programme design, experience with self-direction, outcomes • Analysis of service use data from case study site • Structured interviews with 20 opinion formers in mental health about the significance of self-direction as part of system reform, scope for and barriers to extension

8. Consumer’s views about the failings of the traditional mental health system • Crisis oriented • Not individualised • Does not foster wellness • Does not encourage active participation • Inadequate information about medications and diagnosis • Case managers not supportive and providers do not listen

9. Programmes share common philosophy but design varies by state • Most significant dimension of programme variability: • Scope of self-direction permitted and relationship to Medicaid • Other differences between programmes: • Governance and organisation • Peer involvement • Relationship to traditional mental health system

10. How consumers spend their budget: Florida Medication 16% Transportation 13% 12% 8% Psychiatrist Counselling

11. SDC participants report quality of life improvements Comparing personal outcome measures for SDC and non-SDC mental health services in Florida • People Choose Personal Goals • Choose Living Arrangements • Choose Where They Work • Have Intimate Relationships • Are Satisfied With Services • Are Satisfied With Life Situation • Choose Their Daily Routine • Have Privacy As Needed • Decide To Share Information • Decide When To Share Info. • Live In Integrated Environments • Participate in Life of Community • Interact With Others in Community • Perform Different Social Roles • Have Friends • Are Respected • Choose Services • Realize Personal Goals • Are Connected to Natural Supports • Are Safe • Exercise Rights • Are Treated Fairly • Have Best Possible Health • Are Free From Abuse & Neglect • Experience Continuity & Security

12. What consumers value about self-direction • Advocacy and support as important as the budget • Recovery orientation • Greater flexibility in meeting needs • Experience of peers • An expert guide through the public system • Different relationship with providers

13. Self-direction appears to change patterns of service use

14. No evidence that it increases costs • Consumers tend to spend less than budgeted amount • Evidence that consumers seek to improve value for money without co-pays • Alternative services can be less expensive per service unit and more effective: • Georgia day treatment = $6,491 pa • Peer supports = $1000 pa • Shift to early intervention/ lower intensity services could lead to significant savings over time • Annual cost of state hospital per person = $100,000 • Group home = $40,000 - $60,000 • Self-directed care programme to support transition to independent living = $10,000

15. Three main areas for improvement • Reduce amount of paperwork and length of enrollment process • Develop more centralised, electronic financial management systems: • Increase programme visibility among consumers

16. Conclusions • Self-direction in mental health is embryonic. Early evidence is encouraging • Need for more rigorous, larger-scale evaluation • Design of self-directed programmes critical to access and outcomes • Self-direction shifts spending towards non-clinical, non-healthcare related goods and services • Self-direction can improve value for money in the public mental health system • Self-direction is one strategy for system transformation

17. UK policy implications • Self-direction currently restricted to social care and long term support services outside the NHS. • US experience encouraging about the potential for extending self-direction into the NHS • Benefits of self-direction not undermined by greater complexity of healthcare • Equity concerns can be addressed through adequate provision of support services

18. US policy implications for mental health • Limited progress since New Freedom Commission • Medicaid rules acts as barrier • No single model of implementation • State mental health agencies could learn more from the experience of long term care • Development of peer specialists important complement to self-direction