1. Can we trust consumerism to make IF work? Ken Simons,Norah Fry Research Centre University of Bristol. Pictures by Change

2. A starting point A group of self advocates advising the Department of Health: ‘We want things to keep us safe…but not in ways that stop us doing things’ They do not feels safe if any environments (in services or in the community) Their experiences of ‘regulation’ are not positive

3. Some UK Context The major form of regulation is through ‘Registration and Inspection’ of residential homes (think ICF/MRs!) Meant to be at ‘arms length’ from commissioners (though soon to become fully independent) A national legal framework... …interpreted and implemented locally

4. Some context and people with intellectual disabilities 1980: The idea of the right to an ‘ordinary life’ 2000 ….in residential care? Very few people with intellectual disabilities live in their own home Most public provision for people for people with learning difficulties is registered as residential care

5. The disadvantages of registration and inspection it is tenure specific (no statutory regulation of services to people in their own home) it does not reflect notions of rights or citizenship (‘home’ as a public space) only regulates providers (not system as a whole) it is almost inevitably about congregate services

6. …and... funding and income entangled up with regulatory status (it leaves people with little disposable income) It equates vulnerability with ‘personal care’ it is interpreted in inconsistent and arbitrary ways It is geared to the regulation of large scale services for elderly citizens ….etc.

7. …and... Many people in residential care are socially isolated, with families kept at arms length... …hence a case for arguing that current regulation contributes to vulnerability... …and not surprisingly the reaction of some families to an abusive regulatory system: ‘just get out of our hair’.

8. But... It is better probably better than nothing Although it can be nothing more than a paper exercise (for small homes), it does help identify obviously incompetent services Reasonably good at eliminating obvious ‘cowboys’ Some inspectors have valuable ‘nose’

9. The experiences of people who are a low priority for specialist services Most are upright citizens, who manage well in often difficult environments, but a significant minority: –get into exploitative relationships –get parted from their money –live chaotic lives –have trouble with neighbours, etc –get caught up in the criminal justice system.

10. The lessons from service supporting this group Trying to take control over the lives will be resented, and will often be unsuccessful. Need to: –build trust –ensure they are informed about risks –are helped to develop protective strategies (avoid this pub at this time) –supported to take action against perpetrators of abuse –promote mutual support

11. At the same time... help build supportive networks: know the local risks (community safety audits) develop community harassment policies, etc

12. Regulatory failures Deaths in private group homes reported by the Washington Post The MacIntyre undercover programme in the UK Events which prompted much discussion on the various list-servers

13. ..and subsequent responses.. This is an inevitable consequence of having mini-institutions…and self- determination/supported living would solve the problem! –may provide important checks and balances missing in residential care..but – implausible that nothing will ever go wrong – different kinds of risks –dangerous assumption that being well intentioned is sufficient (we are the good guys, they are the bad)

14. …and.. That by giving people the money, market forces will sort out the bad guys (‘there is no need for quality assurance is self-managed systems’) Market forces clearly have a role to play. But.. –market forces are a very imperfect mechanisms –they work least well for people who have very particular needs

15. Cont…. –they will work best for people who are well informed and well supported…can we guarantee that everybody will be well informed and supported? –There seems to be a fundamental difference between using agencies (buying in a market), and being a self-manager –I don’t want unregulated markets in my life (but then I come from a European Social Democratic tradition….)

16. Give people the money and people will choose inclusion I am sure most will…. –experience suggest some won’t –it will still be very hard to create inclusive communities ….self directed or managed resources will clearly play a part, but are unlikely to be a sufficient condition. On its own money will not necessarily achieve inclusion.

17. Self-directed supports likely to be only one component….. – person centred planning –self-directed or self-managed personal assistance –support services for self-managers (led by disabled people?) –community development work –collective participation in commissioning and systems change –collective participation in regulation

18. My other concern The risk of exclusion by ‘incapacity’ People with intellectual disabilities have been refused direct payments, or access to self-directed services because they are seen as unable to ‘self-manage’ …..but for some people will be very reliant on others interpreting their wishes We need to explore ways of ensuring supporters do provide effective supported decision making

19. Reason to be cautious... We still don’t know that much about how these systems will work. For example: –very few people with learning disabilities with direct payments in the UK, still relative few people with development disabilities ‘employers of record’ in the US –the issue of how to allocate resources (and how much) remains unresolved Need to have our ‘eyes wide open’

20. …and we will need some regulation based on models of rights and citizenship regulate systems not individuals regulate with, not for recognise the importance of connectedness provide structures for people to challenge the system

21. For further information E-mail me: –k.r.simons@bristol.ac.uk Web sites: –http://www.bristol.ac.uk/Depts/NorahFry/