launch of esdsn - european sds network

Self-Directed Supportcreating a European network

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.

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?”

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

English data 2003-2005, first In Control pilot

English data 2005-2007

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

1. Rights

Support should not be a professional gift - it should be an entitlement

The government money fallacy

it can’t always be government money:

where did government get it from?

2. Control

The right person must have responsibility - control as close to the person as possible

Needs are met - but met in ways that are shaped by the person.

3. Clarity

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

Clarity about money seems to improve how people plan and how willing the system is to provide flexibility. But it can be corrupted.

4. Flexibility

Flexible funding helps promote greater community involvement

5. Easy to use

Resistance to innovation often leads to increases in complexity.

• 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

Trust is critical.

6. Community

Self-directed support seeks to move money into community - in different ways.

This includes how people take control.

7. Sustainability

Self-directed support demands a new way of managing - NOT the middle

Its about citizenship - NOT services

Questions

There are some important risks

• 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

Service providers led the move to

self-directed support and can play a

positive role

One useful approach is to offer ISFs - flexible managed funds

Research on use of ISFs - Choice Support

People, staff and families saw major improvements as savings were also made

Major improvements were seen in every area of life and support.

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

We want to explore how best Europe can embrace self-directed support and ensure it promotes citizenship

and community

• 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?

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.

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

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

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  simon@centreforwelfarereform.org    +44  7729  7729  41

Aarne  Rajalahti          Development  Manager      Service  Foundation  for  People  with  Intellectual  Disabilities  aarne.rajalahti@kvps.fi  +358  40  517  4447

© Simon Duffy. Rights Reserved. Full copyright details at www.centreforwelfarereform.org