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Column: ‘Therapists are told to prescribe the cheapest equipment’

Ahead of a planned Dáil protest today, mother Lorraine Dempsey describes the daily struggle faced by parents of children with special needs.

Image: Dom H UK via Flickr

Parents, teachers and campaign groups will mass at the gates of Leinster House this afternoon to protest against cuts in the number of Special Needs Assistants in schools.

Here one mother, Lorraine Dempsey, describes her own struggle – and why the cutbacks are hurting everybody.

PREGNANCY CAN BE a time of worry for some, but few can really imagine what it is to have a child with disabilities until it actually happens.

All thoughts of coffee mornings and carefree shopping for cute little outfits can get jettisoned out the window and replaced with a diary full of medical appointments, therapy sessions and moments where you are plunged into a very dark place instead of experiencing all the joy that a new baby normally brings. Parenting soon becomes more akin to being a healthcare professional. Family life can easily be consumed by the needs of one child, and getting those needs met can be more of a battle than most people would anticipate.

Some children, like my own, are born critically ill and have to fight to survive from the outset. Others may have disabilities that only become apparent as the child grows older. Perverse as it may sound, I count myself lucky that my child has a physical disability that fits neatly into a box on HSE and Social Welfare forms, meets all the criteria for Special Needs Assistant (SNA) support in school and is unambiguous in definition. This was the key to my child accessing services and supports without ever encountering any real difficulties. That is, of course, until the recession hit.

As fiscal policy was debated on a nightly basis on TV and radio, I wondered ‘How will this impact on my child?’

‘At least my child still gets therapy’

When the first signs of austerity crept into HSE equipment budgets, bright and child-friendly patterns were no longer allowed on children’s splints. Waiting for an adapted toilet seat now took eight months, and as the economy spiralled further out of control, you would not see sight of a new wheelchair within a year from applying. Now therapists are being told to prescribe the cheapest of equipment and not what might be the best or most cost effective long-term option for my child. But at least my child still gets therapy. This is all minor compared to the battles that I come across everyday with other families.

What I have learnt is that diagnosis is everything. A child with physical disabilities may not have the same struggle to access services and educational supports as a child with intellectual disabilities. Then there is Autism Spectrum Disorder, and children with no real diagnosis who are given a sophisticated label of Global Developmental Delay, which amounts to ‘There is obviously something wrong but we don’t have a name for it.’ These children are like the poor cousins who get thrown the scraps of the health service, and don’t fit neatly into any box on a form created by public or civil servants.

The struggle that these families have, in what claims to be a First World country, is nothing less than sinful. And it is not all down to the economic decline and budget deficits. Even in times of prosperity, services and supports were deeply lacking for this cohort. Divisions even within the HSE have led to ridiculous situations where children cannot get Occupational Therapy or Speech and Language from the Community Teams if they are attending Child and Adolescent Mental Health Services – who themselves often do not have a full team to provide these therapies due to the staff embargo and maternity leave (where therapy staff are not replaced).

‘Poorly funded and mismanaged’

We must work towards a model of special education that is right for Ireland, is recession-proof and works for all children. But without better integration between health and education, schools will be left high and dry when trying to cope without the supports that they have become accustomed to. It is hard to separate the influence of a poorly funded and mismanaged health system from the impact that it has in the special education system. How can we expect a teacher in a class of 32 to manage a pupil with behavioural difficulties arising out of a disability, if the child receives little or no intervention from qualified therapists to improve and manage their behavioural needs on an ongoing basis?

Which would be more cost-effective in the long term? A solid support system for schools and appropriate levels of therapeutic intervention for the child, or children growing up forever dependent on the State because they could not access education in a productive way? Of course, the other factors in terms of cost are parents themselves. Unemployment, marital breakdown and stress-related disorders are all too common among parents of children with special needs, because they continuously feel they have to fight ‘The System’ to get what their children require. Life revolves around sending the next email or letter demanding that something be done for their child.

Ireland cannot ride the wave of pride for hosting the Special Olympics forever. We need to aspire to building an equal and inclusive society where my child, and others, have some chance of becoming more than feel-good tokens. I’d rather my child becomes a productive citizen who has the opportunity to enrich our lives and contribute to the richness of diversity of society. That is what I and other parents are ultimately fighting for and that is what will ease the burden on the State’s empty pockets in the future.

Lorraine Dempsey’s career in nursing was cut short due to having a child with complex needs. She spent eleven months working as a volunteer with children with multiple disabilities in the Children’s Sunshine Home and is currently working in a voluntary capacity as Public Relations Officer and Spokesperson for the Special Needs Parents Association.

Read more: Parents to protest at Dáil over special needs cuts>

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Lorraine Dempsey

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