1. My money matters – Findings from direct payments research Karen Fisher Social Policy Research Centre Carolyn Campbell-McLean Disability Studies and Research Centre University of New South Wales, Sydney 4 th Biennial Disability Studies Conference, Lancaster University, 2-4 Sept 2008

2. Outline uOrganisation of social services uAttendant Care Program direct funding pilot uResearch process u Findings Participant outcomes Care arrangements Governance uImplications for policy change

3. Organisation of social services uDirect payments from government to consumers to purchase care on an open market uOne form of individual funding uRationale – control, flexibility, quality and efficiency uRisks without adequate program support – care quality and quantity, cost, abuse, worker conditions, integration and review

4. Attendant Care Program direct funding pilot uNSW Department of Ageing, Disability and Home Care uFirst full direct payments option for people with disability in Australia uAttendant Care Program (ACP) – employer, cooperative, direct funding uPeople with physical disability with high personal care needs, with capacity to manage funding and employment uMonthly direct payments, employ, organise, report

5. Evaluation u Process, outcomes, economic analysis, 12 months, 2006-07 Questions uPeople in the pilot Does the pilot increase participant wellbeing and community participation; and participant and attendant carer satisfaction? u Governance Are appropriate and effective governance arrangements in place to support the establishment and ongoing development of the pilot? u Service system Does the pilot offer greater choice and flexibility of services; and more effective and efficient use of resources compared to existing arrangements?

6. Evaluation samples

7. Profile of participants

8. Reasons they chose to participate in pilot u Enhance independence, flexibility, reliability, customised training u Control over life, hours, money and attendant carer conditions u Direct relationship with attendant carers u Avoid the complications of employer model Bureaucracy, recruitment, flexibility, full control, cost efficiency u Extend the control and flexibility of the cooperative model

9. Case study on participant outcomes uNatalie had lived away from her rural family to attend high school, gap year and university. uFollowing her injury, she returned to live with her family because of her high support needs. The injury, together with returning home, compromised her independence and control of her life. It was a big adjustment for her and her family. uDirect funding has restored her independence because she is in charge of her care. She was able to travel to Sydney with her attendant carers to become admitted as a lawyer and is now practising. In the rural town, her attendant carers pick her up from social activities at night. uHer family feels it has taken pressure off them and her mother has returned to paid work.

10. Support received through ACP u Similar in both groups u More flexibility on content and specific needs eg. access to education, work, shopping u Supplement with support from family or friends and HACC

11. Personal Wellbeing Index

12. Physical and mental health

13. Family and friends u All have active social networks u Higher satisfaction with personal relationships u Improved family relationships Control in home – impact on partner and children Less pressure on family – fewer care breakdowns Quality social time with family u Improved friendships because greater flexibility

14. Community, social and economic participation u All direct funding participants work or are active in their community u Some have improved their work or study participation uImprovements in lifestyle, participation, feeling part of community, social activities uBetter prior socioeconomic position than the comparison clients uSome comparison group clients thought direct funding could help them improve their participation through better control of care

15. Quality of care u Better quality because control over choice of attendant carer, training, support and conditions u Reliability, flexibility and choice Improvements eg. change arrangements, short care episodes Impact on informal care and participation arrangements u Relationships with attendant carers Trust, commitment, direct personal relationship, negotiate and resolve directly u Satisfaction with support Improved, some need more hours Employer model problems with quality and organisation

16. Case study on quality of care uBen is married with two young children and works full time in his own professional business. He lives in a regional area and has a good team of attendant carers. uHe was previously using a service provider who he felt was not supporting him, but at the same time was imposing restrictions on his care, for example having to wait two weeks for a new attendant carer to start. uHe is able to keep a better track of the hours he uses and use the direct funding to cover first aid training and associated administration costs such as phone calls. uHe brokers the payroll tasks to a local bookkeeper and he says he gets much better value with his funding. uThe attendant carers are happier, better trained and the relationships have improved significantly. As a result, the whole family is better supported.

17. Management of attendant carers uRecruitment and retention – better conditions, easier out of city, back-up from agencies uPayment and conditions – variable rates for shifts, tasks, bonus uSupport training and safety – personalised, pay carers to train, greater responsibility because own consequences uAttendant carer satisfaction – better conditions, direct relationship uProblem solving – more direct and immediate

18. Case study on management of attendant carers uCarlos previously used the ACP employer model. He had many problems with communication with the service, rostering carers and the payroll system. The attendant carers were not previously getting superannuation. uHe has kept quality carers that were going to leave the service provider that previously provided his care. uHe has used his skills in financial management and business to manage his direct funding responsibilities, has become more focused during his days and is developing new skills and experience. uDirect funding has allowed him to improve his social networks, as he is able to go out late at night and still get to bed, because he has a better relationship with his attendant carers and they are better paid. His reputation as the town’s party animal remains intact.

19. Governance u Government support – good information, teleconference u Transition to direct funding – good, transfer hours solved u Implementation – tax, insurance, safety sorted before pilot started u Financial arrangements – reliable, managing surplus good u Accountability requirements – monthly demanding but efficient uAdministration – self, family or contracted

20. Implications for policy uClient capacity or support includes management skills for How direct funding works Financial and human resource responsibilities Managing attendant carer relationships Information technology skills uGovernment administrative support Government and peer support and training Guidelines for likely preference for direct funding uAttendant care employment Conditions for direct funding carers, other carers and relationship to family uCost and accountability Monitoring by experienced government official Questions about applying cost savings uOther ACP models Care arrangements, carer conditions and financial management

21. Consumer preference for financial control Improved care arrangements uattendant carer quality – improved pay and conditions, more likely to be skilled, knowledgeable and compatible uless turnover – pay and conditions, rapport and satisfaction ubetter training – attuned to person’s needs and preferences ucommitted attendant carers – rapport uprocess more efficient – direct relationship and fewer overheads Better care arrangements led to improved quality of care uConsistency, reliability and flexibility Improved outcomes uhealth and wellbeing, confidence and participation

22. Summary u Positive outcomes on all measures u Positive changes to care arrangements u Good governance structure from the Department u Direct funding complements Attendant Care Program options www.sprc.unsw.edu.au/reports/2008/Attendant_Care_Evaluation.pdf