A LABYRINTH?

Parents of a child with autism are confronted with many bewildering questions. Will my child live a life of independence? What impact will the challenges that my child with autism faces have on the lives of his or her siblings and how can I ensure that my son or daughter will be cared for when I am no longer able to do so myself? These concerns are perfectly normal and understandable, however, on a wider level there are many factors that compound these difficulties. Joe McDonald attempts to answer some of the queries.

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It is my view that, in a historical sense, a fundamental flaw has been to categorise supports offered to individuals with autism into ‘children’s’ and ‘adult’ services. Whilst this may have proven useful from an administrative, funding or governance perspective, unfortunately it has at times resulted in compounding difficulties for the individual availing of services. A parent does not stop being a parent suddenly because their child turns 18 years of age.

This ideology has contributed to the difficulties experienced by individuals during times of transition and it has encouraged a culture whereby families tend, understandably, to think in the short term only, out of a necessity to survive rather than flourish. The recent National Review of Autism Services, Past present and way forward’ emphasises the requirement for a ‘life span approach’.

It is crucial that in future the individual with autism be viewed in a holistic manner and that their life course be viewed in its entirety when planning the necessary supports. I have been in the sitting rooms or at the kitchen tables of many mothers and fathers and listened to their frustration over the lack of information available to them at crucial times in the lives of their autistic child.
My advice to individuals, parents and families is to take a proactive approach, to consider all of the potential supports available—to research, visit and review all of the services, in order to become aware of the options in the years ahead. It makes sense to me that parents should be thinking consistently ahead and make informed decisions based upon the quality of supports and the evidence available.

Difficulties experienced by the individual with autism and their family may also be compounded by the failure by sectors, departments and agencies to work collaboratively. The Vision for change report (2006) stated that ‘the needs of children with autism are diverse and require significant inputs from the educational system in addition to health’. Since that original Task Force report, there regrettably remains a lack of cohesion between the Department of Education and Science, the National Council on Special Education and the Health Service Executive. These deficits can only be addressed through a focussed and dedicated commitment from all stakeholders not only in terms of the sectors traditionally associated with those with special needs, but also from sectors considered to be mainstream.

For the parents of the young child with autism, the Disability Act (2005) and the legislative right and entitlement to an early assessment were a significant landmark. The failure of the state to meet the deadlines set out for the commencement and completion of assessments is worrying, to say the least. In part this is due to the lack of funding for the necessary multidisciplinary staff required to carry out the assessments. There is a requirement for the present government to prioritise these young children and ensure that adequate resources are provided.

Local HSE offices are working under extreme pressure as they attempt to share what are currently inadequate resources apportioned nationally to meet the needs of a rapidly growing autistic population. However, there is also a requirement to review the way in which the current system is operating. Approximately 40% of children referred with suspected autism subsequently are found not to have it, which results in valuable resources being inappropriately directed.
The Autism Act (2009) in the UK emphasises the need for an ‘increase in awareness and understanding of autism among frontline professionals and staff in the public service and developing specialist training for staff in health and social care’. A similar exercise should be rolled out in Ireland.

The Review of the operation of the Disability Act 2005 (2011) year stated that ‘there is an uneven implementation of and lack of consistent approach to the assessment of needs process’. There needs to be equity of service and supports regardless of geographic location. To put it bluntly, the quality of the supports available should not be reliant on the autistic child or adult’s address.
Just as significant, in my eyes, is the failure of government to enact the piece of legislation whereby the entitlement to early assessment is available for children aged 5–18 years. This is having a detrimental effect upon many young people with autism, not to mention their circle of supporters. Without the diagnosis they cannot receive the supports that they require and valuable time is lost. The National Review of Autism Services highlights the significant shortage of multidisciplinary staff to manage the size of the caseloads for both diagnosis and intervention.

Also, the growing emphasis by the HSE upon targeted funding in order to put in place such multidisciplinary supports for children has resulted in a lack of recognition for the needs of adults with autism. We must ensure that this population does not become a lost generation.

The new government’s manifesto on disability is keen to allow the ratification of the UN Convention of Rights of Persons with Disabilities. This is welcome, particularly when even today individuals with autism cannot access something as basic as dental care when it is required. It is essential that these rights are embraced and that real and tangible outcomes result as a consequence.
The amount of new funding available in 2011 for young people leaving school and making the transition into adult services was cut by more than 50% (compared to 2010). It appears at this stage that there is no new funding being made available for school leavers in 2012. This will result in significant stress for families living with autism.

What we now require is a commitment from government to multi.annual funding to those with autism. Funding within Health and Social Services that is ring.fenced for those with autism should in no way be used to shore up deficits in other health-service areas.

Service Providers such as the Cork Association for Autism could work more effectively, efficiently and more economically if they could plan 3, 4 or 5 years in advance in confidence. This is not possible at present. Core budgets have been reduced by approximately 14% since 2008, whilst demand for supports has never been greater, with a growing expectation in terms of quality.

The National Intellectual Disability Database (NIDD) is the current tool for which approximately 70% of yearly funding in allocated. There are two difficulties with this. The NIDD research shows clearly there will be an enormous demand for residential, day and respite supports over the coming two years. The actual levels of funding being made available for this anticipated demand are only a fraction of what is actually required. It is clear now that there will be significant levels of unmet need. Government must not ignore these statistics.

The second issue in respect of the NIDD is the fact that many individuals with autism are simply not on it— either through a lack of awareness of its existence, or the fear of stigmatisation on being placed on such a database.

The recently completed Review of disability policy is potentially a landmark report. It points a path towards a new way in which those with autism may be supported in this country—a shift away from compliance with rules to an attainment of outcome-based standards and a demonstrated commitment to continuous quality improvement.

The danger is that their needs may not be captured through the research and, subsequently, not planned for in a budgetary way.

On a more positive note, the immanent auditing of service providers by the Health, Information and Quality Authority (HIQA) is a welcome development—welcomed by all service providers including the CAA. This will ensure that quality-assured Person-centred supports become the norm into the future.
Similarly, the recently completed review of adult day services in this country and the subsequent New directions initiative is also a positive step forward for those school-leaving children entering adult day services.

The recently completed Review of disability policy is potentially a landmark report. It points a path towards a new way in which those with autism may be supported in this country—a shift away from compliance with rules to an attainment of outcome-based standards and a demonstrated commitment to continuous quality improvement.

Each person with autism will have an assessment of needs shaping that individual’s support plan. In turn this will be used to identify an individualised budget that is effectively attached to the person and they will have an input into how this resource is used to meet their needs. This may be termed direct payments or brokerage amongst other labels. The result, regardless of the label, should be greater empowerment for the individual with autism. This could be revolutionary, if it is implemented effectively. The CAA welcomes such a development. We pride ourselves on our standards of service provision. The individualised person-centred supports and the close working relationship we have with the families who use our service is viewed as one of our core strengths. Real, meaningful and effective supports that offer hope, improve the quality of life not only for the individual with autism but also for their circle of support.

The challenge that lies ahead is to preserve and continue the good work that has been carried out in what will be an extremely challenging next few years—to embrace the positive policy changes that I have outlined above and to ensure that they result in real measurable and tangible results for those with autism. I believe that despite the current economic crisis, there is a real opportunity to embark upon new ways of thinking when it comes to autism and I look forward to working with individuals, families and all stakeholders in achieving quality outcomes in the years ahead.

Joe McDonald has a Bachelor of Arts Degree in Applied Management (Not for Profit), a Diploma in Health Service Management, a Diploma in Health & Social Care and is currently completing a Master Of Arts Degree in Leading Innovation & Change. He has worked for 6 years with individuals with acquired brain injuries, 3 years in general Intellectual Disability and for the last 9 years exclusively in the area of Autism and Asperger Syndrome. He has been Director of Services for the Cork Association for Autism (CAA) for the last seven years. The CAA has successfully merged the two key issues of advocacy and Service Provision and in the process offers high quality, truly person centred supports based upon the individuals ability, aspirations and vision for the future that they desire. The CAA is firmly rooted in the social model of disability.

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