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Launch of ESDSN - European SDS Network
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Self-Directed Supportcreating a European network
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Self-Directed Support• It is not new - it has been
growing since the 1960s.
• It can be found in lots of places around the world.
• It has been successful, but slow to grow.
• It creates new opportunities and new risks.
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Sami Helle at European Parliament, November 2013
“We are obliged to surrender to the will of the strong. Big companies, cities and municipalities decide what is best for us. This is about power. Why do I feel a lack of power in my own life?”
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Research
• Positive outcomes (often) negative outcomes (never)
• Can cost less, can cost more
• Tends to increase demand
• Design matters - there are big differences between different systems
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English data 2003-2005, first In Control pilot
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English data 2005-2007
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Design Matters1. Rights - secure foundations
2. Control - person focused
3. Clarity - transparent
4. Flexibility - high in options
5. Ease of use - low in burdens
6. Community - connectivity
7. Sustainability - evolving
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1. Rights
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Support should not be a professional gift - it should be an entitlement
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The government money fallacy
it can’t always be government money:
where did government get it from?
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2. Control
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The right person must have responsibility - control as close to the person as possible
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Needs are met - but met in ways that are shaped by the person.
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3. Clarity
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Systems ration resources in different ways !
1.by responding to crises or requests 2.by creating waiting lists for places 3.by professional assessment 4.by public rules for entitlements 5.by negotiation
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Clarity about money seems to improve how people plan and how willing the system is to provide flexibility. But it can be corrupted.
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4. Flexibility
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Flexible funding helps promote greater community involvement
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5. Easy to use
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Resistance to innovation often leads to increases in complexity.
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• Big support plans
• Complex resource assessments
• Lengthy processes for review and decisions
• Intrusive bureaucracy and monitoring
• Multiple and conflicting funding streams
• Weak incentives to take control
• Regulations and inspections
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Trust is critical.
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6. Community
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Self-directed support seeks to move money into community - in different ways.
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This includes how people take control.
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7. Sustainability
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Self-directed support demands a new way of managing - NOT the middle
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Its about citizenship - NOT services
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Questions
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There are some important risks
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• The efficiencies can be turned into cuts not improvements
• Service providers can be cut out of the process and not encouraged to play a full part
• The system can burden people with unnecessary burdens and confusion
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Service providers led the move to
self-directed support and can play a
positive role
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One useful approach is to offer ISFs - flexible managed funds
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Research on use of ISFs - Choice Support
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People, staff and families saw major improvements as savings were also made
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Major improvements were seen in every area of life and support.
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impact on services• Changes the security - not
the system, but people
• Changes the purpose - not quality, but citizenship
• Changes the means - not services, but community
• Changes the politics - not funding, but rights
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We want to explore how best Europe can embrace self-directed support and ensure it promotes citizenship
and community
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• Can we create a European movement for self-directed support to focus on the right things?
• Can we put civil society, community and persons with disabilities at the heart of the movement?
• Can we encourage experimentation and learning between European countries?
• Can we help the European Union strengthen their support for real human rights and inclusion?
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Ideas for European Self-Directed Support
Network
!
Mission !
To help persons with disabilities across Europe to achieve full citizenship by reforming systems for funding assistance and meeting the human rights of people with disabilities.
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Objectives 1.To identify systems of self-directed support used in Europe2.To identify and share good practice 3.To identify obstacles to good practice4.To create a network of champions for self-directed
support across Europe (of interested organisations, people with disabilities and families)5.To build alliances with other groups who are using self-
directed support (not just people with disabilities)6.To help improve European policy-making on self-directed
support
Ideas for European Self-Directed Support
Network
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PartnershipWe need partners in all of the objectives. We need to •meet, share, learn •make research, build strategies •grow a network •use social media and easy to access -tools •organise events, lobby, publish papers• find ways for service producers to help•work together to promote people’s right to access full citizenship
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The European Self-‐Directed Support Network Do you want to join in?
Your logo here? ☺
Contacts
Dr Simon Duffy Director The Centre for Welfare Reform [email protected] +44 7729 7729 41
Aarne Rajalahti Development Manager Service Foundation for People with Intellectual Disabilities [email protected] +358 40 517 4447
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© Simon Duffy. Rights Reserved. Full copyright details at www.centreforwelfarereform.org