Election Policy

Irish Autism Action Policy Document March 2007

The items below represent the Areas IAA would want any incoming Governement to address as priorities

Recognition of Autism as a separate and unique Disability and providing funding accordingly



Autism is a unique and baffling condition which manifests itself in many different ways and with varying degrees of Severity .At it’s core are the triad of impairments ,Sensory Social and Communication with many Autists remaining non-verbal or having extremely limited speech for all their lives.They are however not stupid and many have fantastic learning ability if instructed in the correct manner .

In Ireland in 2007 there are no accurate statistics available concerning the incidence of Autism but if we accept the worldwide figures of 1 in 166 children and we know that there have been approximately 870,000 births registered in Ireland since 1990 ,then we have 5240 Children with Autism of school going age.

Autistic Specific Provision is specialised and in order to future plan for it we must get accurate data .

IAA therefore are calling for Autism to be introduced as a Separate and unique category on the National Intellectual Disability database and we call on the HSE to work with IAA to ensure the information is acquired.


Early Diagnosis and Intervention

Worldwide research has shown that early and intensive intervention provides the person with Autism with the best chance of achieving the skills to lead some form of Independent life in their adulthood .

IAA note with despair that in Ireland in 2007 some children are waiting for up to 2 years to get a diagnosis of Autism .These are 2 lost years of opportunity as without the diagnosis you cannot get the service .

To counter this IAA have opened the Solas Centre in Clontarf which is Ireland’s first dedicated Diagnosis and Assessment Centre for Autism.This Centre receives no funding from the Governement and IAA call on the Government to provide €500,000 per year to fund the Centre until such times as the waiting lists are cleared and the HSE has the capacity to carry out this function itself.


Family and Social supports


Having a child with Autism ,places terrible strains on Parents relationships siblings and the wider family.In 90% of cases it is impossible for both parents to work such are the demands of having a child with Autism in the family and the financial opportunity cost even at an estimate of €30,000 per year over a working life of 30 years this totals €900,000 .Coupled with this is the near certainty that parents will be funding elements of their Child’s educational and therauputic needs from their own pocket and the financial outlook for these families is bleak.

In addition to the above the childs needs are such that family outings ,meals out etc become impossible and all the family can feel trapped in the House which has a devastating effect on siblings and on the parents relationship

In recognition therefore of the money that these non working Parents save the state by staying at home to care for their child with Autism ,IAA call for the abolition of means testing as a qualification for receipt of Carers Benefit and that where a Parent is at home caring for the Autistic Child the benefit is paid as of right

Moreover we call on for an automatic entitlement to a payment for 10 hours home –based respite care per week for the families Where home based repite is not suitable the respite should be provided in a residential centre that is Autism Specific and Autism proofed .


Housing

Housing is recognised worldwide as one of the most basic right of all .In the week that the Mental Health Foundation found that 11% of the population in Ireland’s asylums were inappropriately place persons with an Intellectual Disability ,there is a tangible need to conceive and deliver appropriate living units for people which afford them the maximum degree of Independence possible.


IAA therefore call on the Government to fund the development of Ireland’s first Autism Specific supported Living Project for 24 adults in Stillorgin, County Dublin as a template for best practice provision for adults requiring residential support



Education

IAA believe that Education is the most effective proven treatment of Autism at this time and therefore have committed more space to the topic in this document than any other

Children with Autistic Spectrum Disorders (ASD) need a varied approach to education given the nature of the spectrum of the disorder.

Historically and presently the Department of Education and Science have offered a service that is suited to the model of general education that they offer. This in the main is based around the principle that a national school teacher is capable of meeting this need.

Because ASD, by its definition is broad, this is simply not the case anymore. In simple terms ASD affects children differently. Approximately 40% of children with ASD we have found in Irish Autism Action to be on the mild to moderate side of the spectrum and would be best suited to an education in mainstream school with the necessary supports.

Of the remaining 60% all will need an intensive behavioural approach to their education. Applied Behaviour Analysis has been proven to be successful with all children with ASD but is essential with the above mentioned 60% that they access this approach. Of this 60% approximately 30% of these children can make enough cognitive advances to be able to meaningfully access either mainstream education with support or have made enough gains to be able to continue their progress through ASD units attached to mainstream classes. Of the remaining 30% there is a need to maintain the intensive behavioural approach to allow them develop to their full potential.

As stated above we do agree that the “eclectic approach” does work for some of the children but the reality on the ground in these Schools is that there are yawning gaps in provision such as lack of training for Teachers and SNA’s and a dearth of speech (89% of schools surveyed had none) and occupational therapy (82% of schools surveyed had none) and Behavioural consultants (86% of schools surveyed had none) In fact none of the Schools with Autism classes surveyed by the Irish Primary Principals Network considered their existing staffing levels to be adequate to provide a quality education for Children with Autism .49% of Principals who opened Autism Units stated that they wouldn’t do it again because of the lack of resources and training (IPPN)

The overarching principle when teaching Children with Autism is that the approach taken should be “evidence based “ and that all programmes are Individualised , continually monitored and sufficiently resourced.


There are an estimated 6000 children with Autism of Primary School age and not even second level provision for 10% of them. Are we supposed to take them home and leave them there when they are 12?

Minister Hanafin has stated that her Departments Policy approach is Child centred. This is simply not true. They have sat on applications for ABA Schools since the current Minister came to office and 300 children as a consequence having been waiting for up to 2 years to hear from them. IAA have asked the Department since 2001 for evidence and research to back up their policy and prove that the “preferred eclectic approach” is the best way to educate all children with Autism and not one document has been forthcoming in 6 years. We do know however that the “preferred eclectic approach” is the only way Minister Hanafin is prepared to Educate Children with Autism

The conclusion must therefore be that the Department Policy is not child centred, does not believe in giving the child what the child needs and what Educational psychologists have stated what the Child needs.

The facts are however, that if we do not invest in all these children who suffer with this condition we will simply destroy their and their family’s lives, and cost the future generations billions in care costs. Do not forget some adolescents are now costing the taxpayer €500,000 a year in day care, while we seek €50,000 per year to stop this now. We simply cannot afford as a nation to live with our mistakes in the future.




THE TIME FOR CHANGE IS NOW.


IAA call on the Department of Education and Science to engage in a real partnership with Parents to help maximise resources to ensure that quality is provided in all models of response to the Education of Children with Autism .

We further call for the immediate funding of the 12 ABA units ,the proposals for which have not been responded to by the Minister .In addition to this we call on Government to grant permanent status to the 12 “pilot project” ABA Centres of Education that are currently state funded.


IAA believe that all Schools where Autistic children are educated should have acess equivalent to I hour per child per week of Occupational Therapy and I hour per week of Speech Therapy as an absolute minimum .Moreover IAA believe that the DOES should employ these Therapists directly

Finally IAA call on the Government to set up a working party which includes IAA and other relevant stakeholders to prioritise the provision of second and third level models of Education for Children with Autism