Self-Directed Support

Dr Simon Duffy ￭ The Centre for Welfare Reform ￭ 17th June 2013 ￭ Centre de la Gabrielle

An Introduction to an International Innovation

1. The background to self-directed support

2. The idea of citizenship

3. How self-directed support works

4. Evidence and examples

5. Problems and opportunities

Our dark history

At the end of the nineteenth and the for most of the twentieth century it was common for people to think that people with intellectual disabilities were different - they were not citizens.

The powerful eugenic movement which spread across Europe, America and the British Empire led eventually to the murder of over 250,000 people with disabilities in Nazi Germany.

The process of de-humanisation had seven steps:

The factors that weakened people’s grasp on their shared humanity:

1. Mass morality

2. Rootlessness

3. State power

The factors that allowed people to destroy the victims:

1. Rightlessness

2. Poverty

3. Segregation

After World War II the focus has changed. Human rights, the demand for independence and the welfare state have helped change society.

But there is still a long way to go.

Big institutions have slowly closed across Europe. But often they have been replaced with other kinds of institutions.

There is not just one kind of institution

we bring the institution with us

This shows spending in one part of England after the institutions were closed:

Often English de-instutitionalisation

was institutions without the park

Discovering citizenship

If you have been doing things wrong for a long time it is important to think carefully and to be confident that you know what to do now.

What is wrong with institutions1.Devalued lives - self-expression and personal

development threaten institutional thinking

2.No freedom or control - it is very hard to be heard when you have no authority

3.Impoverishment - economic power is nullified

4.Sheltered, but homeless - a home is more than a roof - vital to control privacy and security

5.‘Care’ not support - ‘care’ already assumes the passivity and lower value of the person ‘in care’.

6.Disconnected- it is other citizens who report abuse and it is structures of power within institutions that make that harder

7.Loveless - the shift to focusing on abuse not crime is a symptom of institutional thinking

1.Direction - Its risky if my life lacks meaning and value

2.Freedom - Its risky if I cannot direct my life, communicate or be listened to.

3.Money - Its risky if I lack money or if I cannot control my own money.

4.Home - Its risky if I cannot control who I live with, my home and my privacy.

5.Help - Its risky if I’ve no one to help me and if I cannot control who helps me.

6.Life - Its risky if I am not a valued member of my community.

7.Love - Its risky to have no friends or family.

Why citizenship is better

Citizenship is the right goal

Being a citizen is better than being ‘normal’

it brings us together as equals

but also as unique free individuals

Equal and different

Citizenship is also very practical. We can use the idea of citizenship to think about how to help someone.

Citizenship is possible for everyone

it just might take some extra thought

Patrick’s Story

Tailor everything to the individual...

Reforming the system

The system gave people gifts

not rights, not citizenship

The old system - services first

The new system - people first

These ideas are being developed and tested throughout the world.

Quality always goes up

Costs can go up, down or stay the same

Demand increases

Citizenship can increase alot

It is not about increasing choice

It is not about markets and consumerism

It is about life, community and citizenship

Progress and innovation

This kind of system change is very complex

It changes everything

It is important that people get the right support to help make decisions

Different people might control the budget

Its important money can be spent flexibly

The change in England came from communities first

Innovation is possible in most existing systems

Early successes includedShifting towards entitlements - not gifts

Getting people truly flexible budgets

Focusing on outcomes - not services

Avoiding the trap of ‘brokerage’

Process of collective innovation

It is important to let innovations develop properly

Rushing innovations will lead to false change

Government spent £0.5 billion on implementation:

•more processes - not less•more specialist IT - in an open source world•more ‘consultants’ •more middle-management•over-complication rather than simplification•burdening people and professionals•attention going upwards

Problems and challenges

Today individualised funding is the norm in Denmark, Norway and Sweden. England and Scotland will have moved everyone over to self-directed support in the next 5 years. Australia is developing a new national system. Many US and Canadian states and New Zealand use SDS in some form.

But there are fears.

Will budgets be protected in tough times?

The UK Response to ‘Austerity’

Will budgets be allowed to be flexible?

Will money be allowed to go into communities or just kept for services?

Can this be extended to health or education?

Self-directed support is still changing and developing - it is not yet underpinned by proper rights to support or rights to control support.

But its an important innovation that respects people’s citizenship.