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 Alakeson2006/7 Harkness Fellow in Healthcare Policy ASPE/ Department of Health and Human Services

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

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

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.

1. Robert Wood Johnson Foundation (2006) Choosing Independence: An Overview of the Cash and Counseling model of self-directed personal assistance services

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

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

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

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

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

Number of purchases made by category in District 8 Self-Directed Care Programme Jan-March 2007 (no. rquests for reimbursement)

Medication

Transportation

Psychiatrist

Counselling

Rent and utilities

Dental

Personal appearance

IT

Other therapy

Physical f itness

Other hobbies

Vision

Education

Arts and crafts

Food

Household items

Medical other

Employment-related

How consumers spend their budget: Florida

Medication

Transportation

Psychiatrist

Counselling

Number of purchases made by category in District 8 Self-Directed Care Programme Jan-March 2007 (no. rquests for reimbursement)

Medication

Transportation

Psychiatrist

Counselling

Rent and utilities

Dental

Personal appearance

IT

Other therapy

Physical f itness

Other hobbies

Vision

Education

Arts and crafts

Food

Household items

Medical other

Employment-related

Number of purchases made by category in District 8 Self-Directed Care Programme Jan-March 2007 (no. rquests for reimbursement)

Medication

Transportation

Psychiatrist

Counselling

Rent and utilities

Dental

Personal appearance

IT

Other therapy

Physical f itness

Other hobbies

Vision

Education

Arts and crafts

Food

Household items

Medical other

Employment-related

16%

13%

12%

8%

SDC participants report quality of life improvements

1. People Choose Personal Goals

2. Choose Living Arrangements3. Choose Where They Work4. Have Intimate Relationships5. Are Satisfied With Services6. Are Satisfied With Life

Situation7. Choose Their Daily Routine

8. Have Privacy As Needed9. Decide To Share Information10. Decide When To Share Info.11. Live In Integrated

Environments12. Participate in Life of

Community13. Interact With Others in

Community

14. Perform Different Social Roles

15. Have Friends16. Are Respected17. Choose Services18. Realize Personal Goals19. Are Connected to Natural

Supports

20. Are Safe21. Exercise Rights22. Are Treated Fairly23. Have Best Possible Health24. Are Free From Abuse &

Neglect25. Experience Continuity &

Security

0

20

40

60

80

100

120

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25

Per

cen

tag

e o

f re

spo

nd

ents

SDC Non-SDC

Comparing personal outcome measures for SDC and non-SDC mental health services in Florida

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

Self-direction appears to change patterns of service use

Comparing service utilisation for Florida SDC and matched non-SDC sample, 2005/6

0

20

40

60

80

100

120

Crisis stabilisation Crisis support Assessment Medical incl.psychiatry

Outpatientpsychotherapy

Supportedemployment

Nu

mb

er

of

serv

ice e

ven

ts

SDC

Non-SDC

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

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

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

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

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