If Self-Directed Support is so good, why is it so hard
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The document discusses the challenges and advancements in self-directed support (SDS) for people with disabilities, emphasizing the need for system transformation to achieve true citizenship. It highlights historical progress, current practices, and the importance of individual autonomy and community involvement, while also addressing the complexities and resistance to change within established systems. Key principles for effective SDS include entitlement, freedom, flexibility, and contribution, along with the necessity for ongoing innovation and advocacy.
If Self-Directed Support is so good, why is it so hard
- 1. Self-Directed Support If it's so good, why is it so hard? SKILLS Network on Self-Directed Support
- 3. • Significant, but slow progress towards respecting human rights of people with disabilities. • Equal citizenship is our true goal, but we often lose sight of that goal. • The real change starts with people, not with systems. • There are better systems that can help people achieve citizenship. • There are better legal arrangements, but these do not make good things happen.
- 4. It’s not all about the money, that’s true. But no one is building institutions for free. Money - and who controls it - is really important.
- 5. Self-Directed Support • There has been a pattern of change that began in the 1960s: deinstitutionalisation, independent living, disability rights… and self-directed support • Self-directed support is the name (sometimes) given to the over-arching system changes that began to expand choice, control and citizenship options to everyone.
- 7. • Leadership by people with disabilities e.g Ed Roberts and TRiO (1965) • New support structures, e.g. Center for Independent Living (1972) • Family Advocacy, e.g. Katy Beckett Waiver (1982) • System transformation, e.g. RWJ Foundation (1999) • UNCRPD (2006)
- 8. Article 1 of the UN Declaration of Human Rights states: All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood. The first principle defined by the UN Convention on the Rights of Persons with Disabilities (UNCRPD) is: Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons.
- 12. • Most money is spent on segregated and institutional care. • Advocates are divided and scope of most SDS systems is limited • SDS systems often become increasingly inflexible • Austerity and the attack on disability rights
- 13. Q: Why is it so hard? A: Systems resist change
- 15. Often periods of progress are followed by reversal or stagnation.
- 17. Change is complex • Laws and policies that create a framework of powers and permissions to enable change • Systems, funding and technologies that makes the change a practical possibility • Grassroots innovation, political pressure and people willing to make the change • Deeper thought about what really matters and what values matter.
- 18. I. Values - Are we clear what we really trying to achieve? II. People - How do we build a stronger and broader movement for self-direction? III. Method - Do we know what current good practice looks like and where further innovation is needed? IV. System - Can we identify the best legal systems and policies that currently exist? Challenge is complex
- 19. I. Understanding our goal
- 20. We are not always sure what to call things and we often confuse ‘technology’ with our true goal.
- 23. Our goal is citizenship for all
- 26. John O’Brien “We need to stand on the ground of citizenship.”
- 28. II. Growing the movement
- 34. Now and Next recasts the relationship between the professional and the parent through combining the spirit of person-centred planning, peer support and enabling professionals and families to work together as true equals - respecting the ultimate authority of the family.
- 40. Creating a universal system The 7 Steps of SDS
- 41. 1. People would be told their personal budget as early as possible so that they knew whether they were entitled to support and if so, how much. 2. People could make their own plans, with the people they wanted to. 3. People would finalise and agree their plan with the social worker who worked for the local authority. 4. People could take this budget as cash or ask for it to be managed for them by the local authority or by a third party. 5. People can use their budget flexibly and either organise their own support or pay someone else to organise their support for them. 6. The objective is to enable the person to get on to live their own life as a full citizen, actively involved in their community. 7. The review process should be human and should focus on whether the person is safe, living well and able to follow their own goals.
- 42. Direct payments or personal budgets are not enough. There are multiple innovations possible and many more required before we can extend the scope of SDS to everyone who will benefit.
- 44. Peer Support
- 47. Katrina’s son Jonathan has complex health needs. He has a tracheostomy and needs to take a breathing unit with him at all times. He suffers from severe epilepsy, which requires rectal medication for treatment. He has severe curvature of the spine, is double-jointed and has hypotonia. His health assessment described him as having severe learning disabilities, severe behavioural problems, global development delays and no speech. He also has bilateral deafness and eczema. In the last 3 years before leaving school Jonathan spent 150 days in hospital with breathing problems. After leaving school Jonathan had support that was recruited and controlled by his mum, and funded by an integrated personal budget. There were no more stays in hospital; he had a job where he was valued and earned several qualifications; his life changed for the better.
- 49. IV. Changing the system
- 50. It’s not policy - it’s human rights
- 51. But the Law does no work 1. Support pioneers - Encourage practical change in the real world or identify existing innovations and help people seem them as part of the new wave of change. Unless change seems real most people will not be persuaded. 2. Build understanding - Share stories, research and accessible materials that make the new ideas seem exciting and positive. 3. Keep innovating - Develop a pro-innovation approach to change, instead of fixating on one model encourage people to share good examples and learn from each other. Welcome new ideas and help people to see how different ideas can fit together. 4. Work from the inside - Build alliances with frontline workers and managers who want to make changes and ensure that solutions also help solve problems within existing systems. Create legitimacy for making these changes within the systems that need to change. 5. Go public - Develop a social movement for change which encourages people to see these ideas as relevant to their lives. The Australian campaign Every Australian Counts is a good example of creating an inclusive campaign for change with a positive message.
- 52. A particular danger is that SDS is confused with market liberalism. It helps to understand why SDS really works.
- 53. What the research suggests is that Self-Directed Support works because: 1. People can focus on things they really want to do 2. People can stop doing things they don’t value 3. People can select professional support they really value 4. People can use budget to enhance their community life 5. It is NOT about markets or competition
- 58. Flexibility becomes a central test: Is a personal budget really an entitlement - or is the system really in control?
- 59. Mapping SDS •We got data from 19 European countries: Austria, Belgium (Flanders), Czech Republic, Denmark, •plus USA, Canada, Australia and New Zealand •plus the Progress on Personalised Support research •Development of Global SDS Research Group SKILLS
- 63. • Progress towards deinstitutionalisation remains challenging, and not just in Eastern Europe, but the connection between self-directed support and deinstitutionalisation is undeveloped • It still seems that globally, most resources remain locked in institutions or segregated community services • Many countries have some system of disability benefits and the boundary between disability benefits and personal budgets is not clear • Clear data is generally hard to find and often terms do not map consistently from one country or language to another.
- 64. • Many countries have systems of personal assistance, but these tend to focus on disabled people of working age (e.g. Iceland) and groups who need more support, children and the elderly can be excluded. • Wider system change (self-directed support) is still at a more primitive stage of development with different levels of take-up (e.g. Finland has just begun implementation, Scotland began in 2013, Germany has model since 2001, Catalonia has had a system running since 1991). • Some countries have systems that can be used in principle, but they are not made very accessible (e.g. Italy) • Some countries have no clear system (e.g Ireland)
- 65. • Some countries allow intermediaries to help people manage budgets and employ staff for people (e.g. Malta) • Some countries use independent bodies to assess level of need (e.g. Netherlands) • Some countries do not allow people to employ personal assistants (e.g. Romania) • Many countries have systems with a high degree of local variation, both in law and in implementation (e.g. States and counties in the USA, Provinces in Canada)
- 66. • Some countries allow a high degree of flexibility in how resources are used in theory, but in practice resources may be restricted to more conventional services (e.g. England) • There are different approaches to brokerage and planning, with some countries supporting independent planning (e.g. Belgium (Flanders)) • In some countries the state manages the system of self-directed support (e.g. Scotland), but in others the state sub-contracts the function to private or non- profit organisations (e.g. Wisconsin’s Managed Care System or Australia’s National Disability Insurance Agency). • Lack of funding, low levels of funding, high eligibility and means-testing remain critical issues in many places.
- 67. • People with physical disabilities may need much less help around decision- making and may want to employ their own personal assistants. Hence Self- Directed Support or independent living often focuses on employment of your own staff team. • People with intellectual disabilities may need more help with decision- making and this has led to a greater focus on advocacy or brokerage systems. • Older people may be much less likely to employ staff and may be more willing to purchase services from existing community organisations. • People with mental health problems may be focused on solutions that include counselling and peer support to provide support while making decisions.
- 69. 1. Independent living - we have the right to be a citizen with full access to ordinary lives - I have a right to live my life in a way that makes sense to me. 2. Entitlement - we are each entitled to enough support to achieve citizenship - I have a right to enough support and also the right not to be over-supported. 3. Freedom - we should be in control of our own lives - I have a right to make decisions about how I live my life and, if needed, I have a right to be supported by people who know me and love me to make those decisions with me. 4. Openness - we should be clear about any rules or systems - I have a right to be told clearly and simply how the system of entitlement works and how the rules affect me; including how much money I am entitled to for my support. 5. Flexibility - we should be free to use our own entitlements as we see fit - I have a right to use my money in any way that helps me to live my life; including the freedom to take risks, make mistakes and learn from them. 6. Learning - we should share what we are learning to help everyone - I have a responsibility to share with others what I have learnt, what works for me and what doesn’t work for me. 7. Contribution - we have a responsibility to contribute and to build stronger communities - I have a right and a responsibility to use my skills, talents and knowledge to play a full part as a citizen in my community.
- 70. D&G Ab Fife WD Bord NL Inv SA ER Ren Glas H Independent living 50% 70% 20% 50% 40% 40% 40% 60% 60% 50% 20% 20% Entitlement 70% 50% 20% 30% 20% 30% 30% 20% 70% 30% 20% 10% Freedom 80% 70% 35% 40% 40% 30% 30% 20% 50% 30% 10% 10% Openness 60% 80% 10% 30% 20% 40% 30% 60% 90% 30% 0% 10% Flexibility 20% 60% 10% 0% 10% 30% 30% 40% 60% 30% 0% 10% Learning 80% 60% 60% 0% 40% 80% 30% 70% 65% 20% 0% 10% Contribution 60% 70% 20% 0% 30% 70% 40% 80% 70% 0% 0% 10%
- 72. Big questions • How do we get flexibility in a system where there will still be resistance and professional control? • Where should we begin to make meaningful change? • What is the goal of SDS? • How do we change attitudes, lobby and inspire? • What kind of language should we use?
- 73. Questions for Culture Change • Where do we already know the money? • How do we build on lived experience and existing relationships? • How do we inspire people? • How do we connect people? • How do we use the past and tell old stories anew? • How do we gather outcome and efficiency data? • How do we create a strong community for change?
- 74. Additional resources • www.centreforwelfarereform.org - citizen think tank • www.citizen-network.org - global cooperative • www.enil.eu - PA research • https://cic.arts.ubc.ca - SDS Research Database • www.selfdirectedsupport.eu - online learning on SDS • www.selfdirectedsupport.org - Global SDS Network • http://waindividualisedservices.org.au - personalised support