Self directed supports and personalised budgets: Key issues from research

1. Self directed supports and personalised budgets: Key issues from research Professor Lesley Chenoweth School of Human Services & Social Work Research Centre for Clinical & Community Practice Innovation

2. Overview • What do we mean by self directed care? • What does the research tell us? • Implications and concerns • A way forward?

3. What do we mean by self directed care? • No one model or definition • Refers to a broad range of approaches across health, disability, mental health and ageing sectors • Found in most western countries – USA, Canada, UK, Scandinavia, Australia and New Zealand

4. A range of terms • Self-directed care • Self-directed services • Consumer operated programs • Person centred services/ options • Individualised funding approaches • Person directed support • Self determination

5. Philosophical underpinnings • Shift from social benevolence to growing acknowledgement and respect for capacities, autonomy and rights (Powers, 1996) • Espouses notions of self determination, choice, independence

6. if disabled people are to participate and contribute as equal citizens they must have choice and control over the funding and support they need to go about their daily lives (Glynn et al., 2008).

7. Elements of self directed care • The authority and accountability of the service consumer • Individualised customer directed service planning • Customer selection training and supervision of support providers

8. Elements of self directed care • Flexible benefits covering personal care support, aids and equipment, home modifications, consumer education, brokerage, fiscal intermediaries, employment supports • Individualised funding of service plans either directly to consumers or to funding agency or fiscal intermediary chosen by the consumer • Consumer determined definitions of service quality

9. What does the evidence tell us? • USA National Council on Disability 2004 • Research & Training Center on Community Living, University of Minnesota, 2009 • Direct Payments UK - PSSRU, LSE

10. USA National Council on Disability 2004 • Best studied in area of long term care – consumer control of resources & caregivers tested as better alternative to agency directed community care • Virtually all consumers prefer community based care • Variations in self directed care preferences eg younger people, possible ethnic differences, • No significant differences across different types of disability

11. USA National Council on Disability 2004 • Positive outcomes in terms of consumer satisfaction, quality of life and perceived empowerment • No evidence that consumer direction compromises safety • Conflicting results re cost effectiveness due to variation in study design

12. Research & Training Center on Community Living, University of Minnesota, 2009 • Study of consumer directed services for persons with intellectual & developmental disabilities across USA • Grants for self determination projects • Political and legal drivers • Variation across eligibility, scope and availability of services

13. Research & Training Center on Community Living, University of Minnesota, 2009 • Combined service coordinator and broker role OR separate support brokers • Limited or unlimited budgets • Hiring and payment of support staff - restrictions or flexibility

14. Direct Payments UK • Introduced in UK in 1997 • Initially to people with physical disabilities • 2001 - direct payments available to parents of children with disabilities, carers and 16-17 year olds • 2006 – expand to include those who “lack capacity to give consent”

15. PSSRU, LSE – Direct Payments studies • Critical factors aiding DP • Effective direct payments support scheme • Training and support for front line staff • Leadership within local authority • Positive attitude to direct payment staff • Policy and legislation guidance • Accessible information for service users & carers • Demand from service users & carers

16. PSSRU, LSE – Direct Payments studies • Critical factors hindering DP • Concern about managing direct payments from service users and carers • Resistance to direct payments among staff • Difficulties getting personal assistant staff • Lack of demand from service users and carers • Inadequate training for front line staff

17. Implications & Concerns • The “unbundling” of block-funded services, when implementing a new approach • Measuring and maintaining standards • Considering payment to family members • Ongoing service viability • Complexity of the system

18. Implications & Concerns • Uneven uptake across different groups. • Dealing with crisis or unforeseen situations • The management of financial risk for service users • Making sure brokerage systems are effective • Accountability for spending of funds

19. Implications & Concerns • Having self directed care does not necessarily mean better supports • Devolution of service administration tasks to service users and carers • Direct payments as universal service delivery approach • Need to view self directed care as means to a better life not the final goal - dream better!

20. Effective Approaches • A good system for allocation of individualised funds, linked to person-centred planning for support needs. • Allocation of some block funding to build capacity of services, when implementing IF and self-directed support. • Local area coordination, so that local needs and preferences shape local services. • Implementation in phases by using a particular amount of people or geographical area, with the use of independent pilot/demonstration sites.

21. Effective Approaches • Provision of Infrastructure supports ( e.g. service brokerage; fiscal intermediaries; and case managers) separate from service system. • Minimising bureaucracy • Alternative quality systems to those based solely on organisational frameworks. • Increased access to mainstream services, and increased capacity of mainstream services to respond to specialised needs. • Blended formal and informal supports • Strong safeguards especially for the most vulnerable people

22. Principles • Values framework – rights, social inclusion • Ordinariness • Flexibility • Simplicity • Accountability • Diversity • Safeguards

23. What people say The national direct payments scheme has been introduced to give disabled people more control over care and support needs. I have cerebral palsy and have been a user of direct payments for over ten years . On the whole the scheme has given me far more independence by allowing me to receive personal care when I choose, but there are demands and areas that I think have a negative impact and that need changing

24. What people say Everyone who has participated in it has loved it. They have found greater freedom in it. It has limited government intrusion into people’s lives and has allowed them to be more creative in how they design services to meet their needs

25. Contact Details Professor Lesley Chenoweth School of Human Services & Social Work Griffith Abilities Research Program Research Centre for Clinical & Community Practice Innovation Griffith Institute for Health & Medical Research Griffith University – Logan campus University Drive MEADOWBROOK Q 4131 Australia +61 7 3382 1482 Email: l.chenoweth@griffith.edu.au