Exploring the reality of self-directed support building a better system together Dr Simon Duffy ￭ The Centre for Welfare Reform ￭ 1st October 2013 ￭ Perth, WA

Features of a good system (what to expect, demand, lobby for or build together). Examples of self-directed support in practice (ideas, stories, models). How to be strong and supportive of each other (people, families, providers and government).

Beginnings

Simon Duffy, some background 1990 in London, brokerage, individual funding and service design 1996 in Glasgow, new models of service provision and Individual Service Fund 1999 in Scotland, working on self-directed support with local government 2003 in England, led piloting of self-directed support 2009, established The Centre for Welfare Reform, global community for social innovation trying to combine practice and theory

There is not just one kind of institution we bring the institution with us

Often English de-instutitionalisation was institutions without the park

Being a citizen is better than being ‘normal’ it lets us be equal and different

Citizenship for all is practical, but requires social change

40 plus years of self-directed support always improves outcomes always increases demand sometimes reduces costs system design is critical

recent changes in England Positive Negative Rapid policy and large scale change (700,000 now have budgets). Breakthroughs in flexibility and awareness of entitlement System is financially sustainable Avoided undue reliance on professional brokerage Development of complex assessment and RAS, eroding trust Support planning industry Levels of bureaucracy now increasing Failure to engage providers effectively System now abused to help with 33% cut in care

A system of self-directed support is a system of funding for support that helps people to achieve full citizenship. It can have the following qualities: Rights - robust rights that give people effective entitlements Control - person, or someone close to them, controls budget Clarity - systems, rules and budgets are clear Flexibility - budgets can be used in many different ways Ease of Use - it is easy to plan, manage and control assistance Community - person’s contribution to society grows Sustainable - system is affordable, innovative and supported

Questions?

Rights

the government money fallacy... ...money can’t always be theirs

“It’s my life, my human rights”

Questions Can we turn human rights into real entitlements? What shouldn’t be cashed out? Are people’s plans public property? Is there an alternative to the language of entitlement? Is self-directed support a service or an income adjustment or something else?

Control

We don’t know enough about abuse; but we do know institutions increase the risk of it and having relationships reduces the risk of it.

It’s not about doing everything for yourself

Questions Is the system even-handed towards all the control options? Is changing the point of control an appropriate safeguard? Can people really be trusted?

Clarity

Questions Can we do without a RAS? Why do we want complex assessment systems? What do we mean by ‘sufficient’ ‘reasonable’ ‘necessary’ ? Necessary for what? Should we means-test love and community?

Flexibility

Questions Can people use their money to buy things which are not ‘services’? Can people use their money flexibly and pool it with their other resources? Is self-directed support transformational or merely transactional?

Ease of Use

Community brokerage... not another profession

Questions What purpose is served by complexity? Can providers evolve to embrace, support and underpin self-directed support? Do we need a new professionals? What of social workers and other existing professional groups? How do you resist the plausible regulation?

Community

O’Brien’s five basic tasks of support

The changing role of advocacy and development agencies

We haven’t begun to tap the power of peer support

Questions How do local communities engage with self-directed support? Is it helpful to abandon the commissioning model? What helps people connect, contribute and create new solutions?

Sustainable

Positive change can happen at any levels, but requires the creation of opportunities for innovation

Innovation is complex, evolving and requires different strategies at different stages.

Questions How can you ‘design in’ affordability? How can system change be both liberating and evolving? When change is inevitable how do you frame it helpfully? How can you let everyone to join in?

Next Steps

As Western Australia develops a system of self- directed support what would I want to contribute?

How will I contribute? A parity audit - people on old system Quality audits - show how people’s outcomes is the best response to ‘quality’ construct the entitlement argument amplify voices for rights: people & parents An online forum for people, families and providers. Plus regular face-to-face events (computers don’t work for everyone) watch out for cuts accept failures public register for support for financial advice, planning etc. Work with bell curve - how to support innovation and the people who are stuck Peer support - providing information, learning from others Decentralised approach to service provision A parity audit - people on old system breaking down the age discriminations Engage differently - use ‘entitlement’ - challenge more Providers use infrastructure to support peer support How will I contribute? a system that is pro-community inclusion and accessibility to back innovation and creativity organisational policies Making sure there is real control and flexibility in how we deliver services - across whole organisation. Make the block funding flexible. Push for more innovation & change Certificated programmes available to understand all of your disability rights, including funding People and families - being part of the dialogue of development - make an input MH and elder equity in NDIS