First Minister, Deputy First Minister, Minister, Ladies and Gentlemen, I add my thanks to those already offered – to all of you who join with us today for this Celebration. I want to especially thank our friends from the Autism Society of Sweden. We first met in 1994. They example they bring with to us is inspiring and one we must match in Northern Ireland. We take your attendance at least as an indicator of interest, and for some….it will be a demonstration of a passionate commitment towards establishing social justice for individuals with Autism.
I hope that today will help us all move closer to each other and to establishing the team spirit that is critical in enabling consensus driven legislation for Autism. To contribute to that I want to explain the significance of the Celtic Partnership before focusing in on the challenges at home (in N Ireland) and coming back to how the Partnership is relevant to these.
The Celtic Nations Autism Partnership: The “Political” Context
The Celtic Nations Autism Partnership (CNAP) is an example of what can be achieved through generosity of spirit and an acute awareness that immediate self interest must be set aside if we are to achieve long term stability and progress. Surely, recent events in the governance of Northern Ireland must give resonance to this?
In fact, I am delighted that the example set by the Celtic Nations Autism Partnership is being adopted by the Office of the First Minister and Deputy First Minister as it identifies areas of common interest and partnership with the Scottish Executive and (with the Welsh Assembly, I hope?).
First Minister and Deputy First Minister – I hope you take into your meetings the case for Autism as an example of the need for new protocols and revised budgets.
I am being more serious than you might think……..While our entire Health and Social Care infrastructure was a casualty of the Conflict, Autism only came on the worldwide radar in the 1980s. Services developed in Scotland, England and Wales but were never developed in Northern Ireland. So Autism does have a claim for special consideration under Reconstruction.
The Celtic Nations Autism Partnership is a child of the devolved government structures and new relationships. Never before has there been a united National Movement ….in the UK and across these Islands …for Autism. It is significant and inevitable that social change for Autism is being led by the Nations most affected by the establishment of devolved government structures – the Celtic Nations. Already, plans are in place to share models of Early Intervention and Training and to extend professional interest groups. This activity is unprecedented. The next phase – linking in with the network of Autism Societies in England has already begun.
To summarise, I would like to share one of my favourite quotes from Marcel Proust:
"The real voyage of discovery consists not in seeking new landscapes but in having new eyes.”
So, in Northern Ireland, what is the problem?
Well, we have never counted like the USA but we do know our Health and Social Care infrastructure is struggling under formidable statistics:
- 600 children across Northern Ireland waiting for diagnosis. (Hansard 2006).
- 35 month waiting list (maximum) – making a nonsense therefore of Early Intervention Therapy. (Hansard 2006).
- Rise in prevalence rates from 1 per 1,000 to 1 per 100. There are in excess of 20,000 individuals with ASD in Northern Ireland. Add to that the number of families and professionals involved.
- Increase in numbers of school age children with ASD in Northern Ireland from just over 900 (in 2001) to just below 4,000 (in 2006).
- Juvenile Justice is reporting a rise to 50% of admissions having diagnosis or indicators of ASD.
- Many Special Schools have already reported in excess of 50% of pupils with ASD.
- The Autism Wave predicted by the Task Group in Autism Report in 2001 has now hit our secondary level mainstream education system which is struggling to meet the need. What resources have Health and Social Care set aside to catch these young people in the community (social, leisure, relationship, employment, accommodation)? If we do not meet the challenge, we will feed into the building problems in the justice system as young folk inappropriately display their feelings of isolation, depression, low self esteem, high anxiety and inability to cope with sensory overload and interpretation of society’s rules.
What has been the Government’s response?
In 2004, the first DHSSPS ASD budget was established!
- In 2004/05, £.5 million recurrently for 200 children (Hansard 2007)
- In 2006, £.5 million recurrently for early intervention for 300 children (Hansard 2007)
The figures just don’t add up!
What has been the result?
- Funding has been absorbed into addressing existing deficits (developed over the years of responding “out of existing resources.”).
- It has been swallowed up by the need to develop diagnostic multi-disciplinary teams.
- The small residue remaining went to Early Intervention.
- No long term engagement with the Voluntary Sector.
Why is this?
There is no Strategy! And no Legislation!
So why are we so passionate about legislation?
They say that the devil is in the detail. Well, the detail is before you in the Report (available from Autism NI) you all received on arrival. This is a catalogue of Northern Ireland generated research into the development of evidence-based models of best practice across the 6 counties and a list of Education and Health Board Strategies for ASD. It all lacks one critical element – ownership by the Executive and by the Northern Ireland Assembly and by that I mean the recognition of ASD in legislation.
Why legislation?
I refer you to the Factsheet (also available from Autism NI) which you also received earlier. Current legislation in Northern Ireland and indeed the UK does not recognise ASD. Existing disability legislation is inadequate in profiling the social and communication difficulties experienced by individuals with ASD e.g. individuals with Autism will have difficulty with access to a building because of their social disability and their communication disability. Mere guidelines are ineffective………otherwise DLA would more readily recognise the mobility problems associated with Autism.
So in fact the question is – why not legislation?
Is the spectre of “costs!!” so scary? Is
this what is causing hesitation???
Once again I refer you to the Factsheet you were given earlier.
- For those of us in the work it really is a case of Pay Now or Pay Later. Remember the figures mentioned earlier of budgets set against a few hundred children? What about a more strategic incremental pathway?
- There already is a cost in human and financial terms e.g. family breakdown, anxiety and stress medication, counselling, loss of income due to most families losing one wage earner to cover lack of specialist child care required, loss of professional development opportunities because families try to locate near best service provision.
The cost is already estimated by Martin Knapp at in excess of £1 billion in the UK. This existing budget needs managed for Autism!
We already know we are operating without a developed ASD service infrastructure – using existing services and shifting the balance of provision and money away from other individuals in need. We know our system, our cross agency, multi-disciplinary working could be improved. We could use Autism NI more strategically, dare I say??
We already know that intervention with specialist ASD
strategies improves long term prognosis and decreases dependency on the
State. So much research has focused on the proven benefits of early
intervention but Northern Ireland research in 1994/96 also proved the effectiveness
of later intervention.
So it is not all about new money. It is about new
ways of working – new eyes!
The only obstacles are a lack of vision. We collectively must have that vision!!
Celtic Nations Autism Partnership – The Human Context
I want to end with the story of a journey!
Scattered throughout this gathering are a group of parents from across Northern Ireland. They represent the 17 Autism NI(PAPA) support groups that have lobbied local MLAs/MPs/Councils. These same groups and parents have participated in every ASD consultation exercise that has ever taken place in Northern Ireland – from Derry/L’Derry to Ballymena to Armagh and back again. They form a significant part of the Northern Ireland ASD constituency not consulted by the Bamford Review. (No wonder the Bamford ASD Report was only 4 pages long and had to be revised 3 times!!!).
In 2006, these parents travelled to Whitehall to establish a partnership with Wales’ National Autism Charity and were rewarded by the Secretary of State, Peter Hain, who overturned the Bamford recommendation which would have designated ASD as a mental illness instead of the developmental disability which the world recognises it as!
In 2007, the next stop for this “Spectrum Army” was the Welsh Assembly in Cardiff when as founder members of the Celtic Nations Autism Partnership we all witnessed the launch of the first National Strategy for ASD in these Islands.
But in 2007, the proudest moment was when in the NI Assembly Chamber, every
party and every MLA voted for recognition for Autism within State Legislation
and significantly the Assembly gave recognition to the combined effort of
that Spectrum Army and the 17 year campaign of Autism NI (PAPA) for services.
The Assembly voted for legislation! Will the government departments
and the Assembly take ownership?
So, today – what will we gain from today?
That is not in our hands! That is within your gift.
Beyond today, we are already committed to linking with the other Nations who have already taken the step towards legislation. Sweden, Canada, Denmark, Australia, New Zealand and the USA have all left us behind. So in September, a delegation will travel to Washington as we continue to consult and learn from others. Minister “a date for your diary I hope?”
On 13th October we reach out to the children and adults with an Autistic Spectrum Disorder and ask them to help us “Walk for Autism: Walk for Legislation”. These individuals will walk the avenue to Parliament Buildings to meet our elected representatives.
These parents, these children, young people and adults with ASD are among the most socially excluded group of individuals in our society. We exclude them by not recognising this disability and its impact on their lives. We exclude them by not providing the aids and appliances they need to function usefully in our society. We have shown ourselves capable of making adaptations for people with disabilities (physical, sensory, intellectual) but we have failed to grasp the disability of ASD because the impairments are relatively, at first glance, hidden! We have, after all, got a communication and social disability here!
The journey will not end until we have systems in place that ensure new ways of looking at Autism are established by law.
Arlene Cassidy
(Chief Executive)
