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 individuals 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 Who What When Where Choice of provider for elective procedures Booking hospital appointment times Supply-side diversity eg. NHS Walk-In Centres Choice of treatment and services SELF-DIRECTED CARE

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 evaluation 1 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. 1.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. Consumers 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 Transportation Psychiatrist Counselling 16% 13% 12% 8%

11. SDC participants report quality of life improvements 1.People Choose Personal Goals 2.Choose Living Arrangements 3.Choose Where They Work 4.Have Intimate Relationships 5.Are Satisfied With Services 6.Are Satisfied With Life Situation 7.Choose Their Daily Routine 8.Have Privacy As Needed 9.Decide To Share Information 10.Decide When To Share Info. 11.Live In Integrated Environments 12.Participate in Life of Community 13.Interact With Others in Community 14.Perform Different Social Roles 15.Have Friends 16.Are Respected 17.Choose Services 18.Realize Personal Goals 19.Are Connected to Natural Supports 20.Are Safe 21.Exercise Rights 22.Are Treated Fairly 23.Have Best Possible Health 24.Are Free From Abuse & Neglect 25.Experience Continuity & Security Comparing personal outcome measures for SDC and non-SDC mental health services in Florida

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