The Long Journey

Dr Simon Duffy ￭ The Centre for Welfare Reform ￭ 9th May 2013 ￭ NASDDDS Conference, Oklahoma City

An International Perspective on Supporting Families andIndividuals with Developmental Disabilities

Thoughts I want to shareThe shadow of the institution is very long

Taking citizenship seriously changes everything

There is a bigger picture emerging

It is time to think more deeply

The world is a big place...

...and all we see are little pieces

The long shadow of the institution

Challenges of de-institutionalisation

Do we understand the real problem?

Do we need to take the long road?

Why not go straight to citizenship?

We are all very familiar with the institution as the defining evil which we want to overcome

...but do we really understand the true nature of this evil?

De-institutionalisation in England really gained momentum in the 1980s

Often English de-instutitionalisation

was institutions without the park

There is not just one kind of institution

we bring the institution with us

In Scotland de-institutionalisation was delayed until the 1990s

But this did mean ambitions were often higher:

real homesreal jobsreal livesreal relationships

Scotland leap-frogged England

Tailor everything to the individual...

Today Finland is struggling with this

de-institutionalisation is in danger of becoming re-institutionalisation

Yet there are also exciting innovations and possibilities

Taking citizenship seriously

Questions about citizenship

Can the idea of citizenship help us find our way?

Can we shift real power and control to people?

Who helps make citizenship real?

Being a citizen is better than being ‘normal’

it brings us together as equals

but also as unique free individuals

Citizenship is also very practical

Citizenship is possible for everyone

it just might take some extra thought

In Scotland we began to develop the idea of self-directed support but the appetite was limited in the late 1990s

England was struggling to meet the aspirations of families and people with intellectual disabilities. This provoked a new interest in self-directed support.

we did ‘professional gifts’

not citizenship

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

Self-directed support developed quickly by focusing on spaces for innovation within the old system

In England early success has been somewhat over-taken by mindless implementation of ‘the model’ rather than on-going innovation.

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

Australia is now redesigning its whole system around individualised funding and the promise of extra funding

Different State systems are to be replaced with one Federally controlled system, self-management is a possibility, but:

•care manager controlled•fear of entitlements•rationing through process•high risk of inflexibility •perverse incentives for all

Citizenship itself cannot be just a gift from smart well-intentioned professional

we make power

together

Darker shadows emerging

Emerging questions

Are we entering a new and darker era?

Can we see the new form that older evils take?

Are we ready to defend each other?

...in the name of 'Enlightenment' we are eliminating whole categories of persons. For example: So overwhelming is our animus against the less-than-perfect that nearly 90% of pregnancies that test positive for Down syndrome are aborted in the United States today, all under the rubric of 'choice'. In the name of expanding choice and eliminating 'suffering' we are narrowing our definition of humanity and, along the way, our responsibility to create welcoming environments for all children.

Jean Bethke Elshtain from The Abolition of Man in C S Lewis as Philosopher

[figure for UK is 92%]

We see many different groups pulled into the same kind of hell...

Hopeful paths and deeper roots

Hopeful possibilities

New ways of finding common cause

New ways of giving voice to old values

New ways of solving old problems

Our real wealth is in our own hands

It’s time for constitutional thinking

Could we take citizenship seriously?

• Human rights at heart of system

• Minimum universal securities as rights

• Fair and integrated tax-benefit system

• Individual freedom for all

• Families and communities respected

Thank you USAfor the inspiration to begin

for the challenge to try and go further

for your willingness to reflect more deeply

for your companionship in travelling hopefully

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