2. Ian Loynes Co-ordinator, SCIL Presentation: Direct Payments - The route to independence Presentation © SCIL 2004 unless otherwise indicated Promoting equality across the South Southampton Centre for Independent Living

3. (1)to provide a means by which disabled people may take control over their own lives, achieve full participation in all spheres of society, and effect changes in how they are viewed and treated; An organisation run and controlled by disabled people, working to the principles of the social model of disability Southampton Centre for Independent Living (2)to provide encouragement, assistance, advice, support and facilities to individuals or groups wishing to live independently, and to raise the expectations of disabled people, individually and collectively, and ensure that their voice be heard. Our Aims:

4. Direct Payments? Direct Payments are different from other Social Care provisions. They were designed by Disabled People as an emancipation tool. As such they should not be split from the following principles: The Social Model of Disability The Social Model of Disability Empowerment Empowerment Independent Living Independent Living All these terms are much used now-a-days. Unfortunately, they are often misused or misunderstood

5. The Social Model of Disability…

6. You are the problem!!

7. Southampton Centre for Independent Living THE SOCIAL MODEL OF DISABILITY

8. “It is not my impairment that prevents my equal participation in society; but the barriers that society places in front of me that prevents my inclusion and therefore disables me” i.e. steps rather than ramps THE SOCIAL MODEL OF DISABILITY

9. Disabled people have identified twelve basic needs, which if met would enable them to fully participate in society. SCIL is committed securing these as rights, both locally and nationally. 1. Full ACCESS to our environment 2. A fully accessible TRANSPORT system 3. TECHNICAL AIDS/EQUIPMENT 4. Accessible / adapted HOUSING 5. PERSONAL ASSISTANCE 6. Inclusive EDUCATION and TRAINING 7. An adequate INCOME 8. Equal opportunities for EMPLOYMENT 9. Appropriate and accessible INFORMATION 10. ADVOCACY (towards self advocacy) 11. COUNSELLING 12. Appropriate and accessible HEALTH CARE provision Key barriers that disable us:

10. Empowerment…

11. To invest with power, especially legal power To equip or supply with an ability To enable In reality those who wish to be ‘empowered’ have to take power, rather than waiting to be given power! Definition of Empowerment:

12. Independent Living…

13. Origins of Independent Living Independent Living is part of Disabled People’s Movement to attain full civil and human rights Independent Living is part of Disabled People’s Movement to attain full civil and human rights People living in residential care wanted to break free of regimes “We can take care of ourselves and the money too!” - first instance of DIRECT PAYMENTS - disabled people with ‘complex needs’ employing personal assistants directly People living in residential care wanted to break free of regimes “We can take care of ourselves and the money too!” - first instance of DIRECT PAYMENTS - disabled people with ‘complex needs’ employing personal assistants directly Local Centres for Independent Living developed expertise and proved effectiveness through ‘pilot schemes’ Local Centres for Independent Living developed expertise and proved effectiveness through ‘pilot schemes’

14. Independent Living is not... Independent Living is... Southampton Centre for Independent Living What is Independent Living? Having Choice & control over your life and a say over what happens to you

15. What is Independent Living? Southampton Centre for Independent Living

16. INDEPENDENT LIVING PHILOSOPHY “Independent Living is not about doing everything for yourself, it is about having enough support to lead the life that you choose.” “Independent Living is not about doing everything for yourself, it is about having enough support to lead the life that you choose.” That all human life is of value That anyone, whatever their impairment, is capable of making choices [with support if needed] That people disabled by society’s reaction to impairment have the right to control over their lives That Disabled People have the right to participate fully in society

17. It was from this growing recognition, that Local Authorities and then Central Government responded to the demand of Disabled People for the introduction of Direct Payments. INDEPENDENT LIVING AND COMMUNITY CARE Neither Community Care or Direct Payments equal Independent Living. This is because they do not address all of the ‘basic needs’ – in fact no legislation currently does. It merely pays lip service to it and provides one means by which disabled people try to access their human and civil rights. The entitlements of Disabled People, in so far as they exist, are scattered in many different pieces of legislation (approx. 150) Any infringements of these entitlements are infringements on the human and civil rights of Disabled People – including those infringements arising from consideration of resources when determining eligibility criteria.

18. Direct Payments What, Who, Why & How…

19. Social Services can support Disabled People in 2 ways By providing Direct Care / Services By providing finance to Disabled People to enable them to employ their own personal assistants Home care Day Centre Respite Care Peer support Advice / Info Advocacy Control rests with the provider – Disabled person has little choice Control rests with the Disabled person – They exercise choice and control over their own lives

20. Direct Payments – History Lesson 3 Disabled People in a Hampshire residential home said “Give us the money you pay to the home and we’ll manage our our care needs”. Forerunner to Direct Payments 3 Disabled People in a Hampshire residential home said “Give us the money you pay to the home and we’ll manage our our care needs”. Forerunner to Direct Payments Disabled People liked these ‘Self Operated Care Schemes’ as they enabled them to live independently Disabled People liked these ‘Self Operated Care Schemes’ as they enabled them to live independently Some Local Authorities could see the advantages to these schemes – choice and control for Disabled People – Cost Effective to LA’s Some Local Authorities could see the advantages to these schemes – choice and control for Disabled People – Cost Effective to LA’s However, schemes where patchy and variable as some LA’s worried they might be illegal However, schemes where patchy and variable as some LA’s worried they might be illegal Disabled People eventually convinced Government to legislate to create the “Community Care – Direct Payments Act” Disabled People eventually convinced Government to legislate to create the “Community Care – Direct Payments Act”

21. Key Points To The Direct Payments Act The Community Care (Direct Payments) Act 1996 came into force in April 1997 The Community Care (Direct Payments) Act 1996 came into force in April 1997 The act gave Local Authorities the power to make direct cash payments to disabled people in lieu of community care services The act gave Local Authorities the power to make direct cash payments to disabled people in lieu of community care services The Direct Payments Act’s key aim was to promote the principle of Independent Living (as defined by disabled people) The Direct Payments Act’s key aim was to promote the principle of Independent Living (as defined by disabled people) The act has been extended. It is now effectively mandatory and covers older people, carers, younger people and parents of disabled children The act has been extended. It is now effectively mandatory and covers older people, carers, younger people and parents of disabled children

22. What a Direct Payment can be used for Standard use is to recruit and employ your own staff (Personal Assistant), but: Standard use is to recruit and employ your own staff (Personal Assistant), but: Can be used to purchase any service defined as a community care service (private care agency / day care), except permanent residential care Can be used to purchase any service defined as a community care service (private care agency / day care), except permanent residential care respite care is allowed - a limit of 4 weeks within each 8 week period respite care is allowed - a limit of 4 weeks within each 8 week period

23. What Direct Payments cannot be used for Cannot be used to buy Local Authority services – i.e. a Day Service Cannot be used to buy Local Authority services – i.e. a Day Service [However, mixed packages can be arranged to meet these needs]

24. Who can receive a Direct Payment? Person has to be willing to use a Direct Payment Person has to be willing to use a Direct Payment Person has to be able to manage the scheme (alone or with assistance) Person has to be able to manage the scheme (alone or with assistance) [Blanket judgements should not be made] There are exclusions for people subject to certain mental health or criminal justice measures There are exclusions for people subject to certain mental health or criminal justice measures

25. Who can receive a Direct Payment? Any disabled person aged 16 or over Any disabled person aged 16 or over A disabled person is defined by the act as any person to whom Section 29 of the National Assistance Act applies. This includes people with physical impairment, sensory impairment, learning difficulty, mental health difficulty, HIV/AIDS Carers and Parents of disabled children Carers and Parents of disabled children

26. Personal Assistance Advisors Direct Payments as a concept was ‘invented’ by disabled people Direct Payments as a concept was ‘invented’ by disabled people Some people need support to boost skills and confidence to self manage Some people need support to boost skills and confidence to self manage PAA’s promote, inform and support both disabled people and care managers on all aspects of the scheme PAA’s promote, inform and support both disabled people and care managers on all aspects of the scheme The PAA assists the client with self–assessment, explaining how the scheme operates, finding staff, Record keeping etc. The PAA assists the client with self–assessment, explaining how the scheme operates, finding staff, Record keeping etc.

27. Personal Assistance Advisors PAA’s help make people aware of the responsibilities of being an employer, i.e. Legal obligations, health and safety,tax and national insurance PAA’s help make people aware of the responsibilities of being an employer, i.e. Legal obligations, health and safety,tax and national insurance Assist with recruitment, i.e. advertising for staff, interviewing, job descriptions, contracts of employment Assist with recruitment, i.e. advertising for staff, interviewing, job descriptions, contracts of employment Some PAA's have personal experience of disability and are personal assistance users themselves Some PAA's have personal experience of disability and are personal assistance users themselves

28. Direct Payments is simply a method by which Social Services can provide a person’s care package Direct Payments is simply a method by which Social Services can provide a person’s care package Does not affect any other allowance such as DLA, IS, SDA or student allowances (excl double funding) Does not affect any other allowance such as DLA, IS, SDA or student allowances (excl double funding) Similarly, eligibility for Direct Payments is not affected by other benefits Similarly, eligibility for Direct Payments is not affected by other benefits Direct Payments is usually means tested – recipients may be expected to ‘contribute’ to the cost of their care as per traditional care packages Direct Payments is usually means tested – recipients may be expected to ‘contribute’ to the cost of their care as per traditional care packages Direct Payments do not affect Tax Returns! Direct Payments do not affect Tax Returns! However, there are clearly links between DLA, Direct Payments, ILF, ATW and other allowances. Disabled People often have to negotiate many of these to get all their needs met. However, there are clearly links between DLA, Direct Payments, ILF, ATW and other allowances. Disabled People often have to negotiate many of these to get all their needs met. Direct Payments – Link to other allowances

29. Young Disabled People want to be just like their non- disabled peers – they want their independence and naturally want to be less dependent on parents Young Disabled People want to be just like their non- disabled peers – they want their independence and naturally want to be less dependent on parents Therefore an ideal environment for Direct Payments Therefore an ideal environment for Direct Payments Having an ability to communicate has to be a basic human right and a major factor in independence Having an ability to communicate has to be a basic human right and a major factor in independence There are many examples of Direct Payments being used to improve people’s ability to communicate, either via equipment or via a PA who ‘learns’ to understand an individual and relays information to those who can not understand There are many examples of Direct Payments being used to improve people’s ability to communicate, either via equipment or via a PA who ‘learns’ to understand an individual and relays information to those who can not understand Direct Payments where invented by people with very complex needs and usually have a much better outcome for these people than for people with lesser needs. Direct Payments where invented by people with very complex needs and usually have a much better outcome for these people than for people with lesser needs. Direct Payments – Meeting complex needs & communication difficulties in young people

30. Contact local Social Services Dept Contact local Social Services Dept Contact and involve local support service (PAA’s) Contact and involve local support service (PAA’s) Disabled People must be encouraged to understand their rights and to self-assess their needs – prior to formal Social Services assessment Disabled People must be encouraged to understand their rights and to self-assess their needs – prior to formal Social Services assessment Don’t take NO for an answer – Eligibility criteria can be restrictive and Care Managers are often gatekeepers of resources and may be unwilling to fully examine all of an individuals needs which will properly enable them to live independently Don’t take NO for an answer – Eligibility criteria can be restrictive and Care Managers are often gatekeepers of resources and may be unwilling to fully examine all of an individuals needs which will properly enable them to live independently Direct Payments – Direct Payments – Roadmap & pitfalls to avoid…

31. In policy, the same needs as any other care provision. In practice assessment for independence are often radically different to dependency based services In policy, the same needs as any other care provision. In practice assessment for independence are often radically different to dependency based services Ever tightening eligibility criteria are threatening principle of independence Ever tightening eligibility criteria are threatening principle of independence Depending on eligibility, Direct Payments can meet Personal, Domestic and Social needs Depending on eligibility, Direct Payments can meet Personal, Domestic and Social needs If Health or Access to Work have inputs to care needs then arguments about who pays for what can be farcical! If Health or Access to Work have inputs to care needs then arguments about who pays for what can be farcical! Direct Payments – What needs do they meet?

32. Provides important choice and control over: Who provides our PA support Who provides our PA support When it is provided When it is provided What we are supported to do What we are supported to do “No more waiting in queues” “No more waiting in queues” How it is provided How it is provided All in all, an independent life & the route to empowering young disabled people Direct Payments - the key to Independent Living

33. Thank You! www.SouthamptonCIL.co.uk Info@SouthamptonCIL.co.uk National Centre for Independent Living: www.NCIL.org.uk