Supporting People with an Intellectual Disability as Parents

  • Marina Giblin feels disheartened by how society views people with disabilities
  • Services appear compromised despite parents’ and families’ best efforts
  • The lack of central control and co-ordination has made it difficult for children to access early education
  • People with intellectual disabilities can be directed toward “special schools”, stopping them being educated with their friends in their own community
  • So, learning and living time are lost in travelling
  • Does society value all its citizens equally?

The Irish system and attitudes to people with a disability means that the only true advocates people with a disability have are more than often their parents. Remove parents from this equation, and what is left is the current appalling situation unfolding in the care system and the HSE.

Sadly, in my view, the evidence strongly indicates that our society does not fundamentally value people with any form of a disability. There is no allocation of meaningful resources at any level to support disability and this starts at birth and follows all through life. Parents are left to fight for practical support, therapies, services, education and training to ensure their children have any quality of life. It is soul-destroying because you encounter resistance at every step of your child’s journey. Your child is as important in your life as any parent’s child and you want only what is best for them. You want your child to reach their full potential like any parent, to be given opportunity to shine in life and experience every wonderful thing that parents dream for their children. In order for your child to achieve these things they need support, and it is this support that our state does not invest in.

All people with a disability need a holistic approach to early intervention – regardless of diagnosis, the approach needs to be multi-faceted.  This needs to include speech therapy, occupational therapy and physiotherapy as basic requirements for every child. Currently this is not easy to source or secure, and unless this is done early in a child’s life the potential outcome for the child can be devastating.

Education is the key to integration of people with disabilities into the community – it sets the stage for the person’s future. At the moment children cannot even access pre-school with the support they need. There is no co-ordinated approach centrally. In essence the reality of segregation is beginning to emerge. Once children are eligible for school, the problem is at crisis level. The Department of Education have absolutely no accountability for what happens at our state’s schools. Resources are allocated by the NCSE to the schools and that is where their involvement ends. There is absolutely no oversight by the NCSE and the Department of Education on how the approved resources are allocated at school level for the benefit of the individual child. The implementation of these resources and the success of their outcome are not audited by anyone at any level.  It is a well-documented fact that children with challenges learn in a different way and need input and implementation from various professionals to maximise their learning opportunities. In class sizes of 30, with very little (if any) direct interaction with the class teacher, and a maximum in very few cases of 5 hours resource learning, this is detrimental. SNA support is not the answer; this is just to facilitate the practical day-to-day of a child’s physical presence at school.

Our own personal experience with my daughter was harrowing. We felt by the end of our experience at ‘inclusion’ that our child was isolated, neglected and discriminated against, as were we as her parents. All we wanted for our child was to be educated in our community with her friends and neighbours where she could grow into an adult with the support of our local community and feel a valued member of society. The reality was very much the opposite. We were told that our daughter might be better off in a special school where she could be ‘the best at something’; we were basically exhorted to remove her from the school under threat of expulsion. All of this unfolded with hardly any of her recommended resources, from a huge team of professionals, being implemented. The entire experience has left us hollow and completely disillusioned and despite every effort on our part for intervention or accountability for the actions of the school, there is no recourse.

The experience has left us questioning the moral fibre of our society, and indeed if there is any collective consciousness. None of the parents supported us to keep our daughter in the school and hold the school accountable for their actions. Some crossed the road; some kept their heads down and most shook their heads. Some even said they could understand the school’s position because it was a drain on its resources to support our child to reach her full potential. I doubt anybody saw our daughter as worthy of the same educational opportunities as their children. She was viewed as deficient and part of a ‘special school population’, rather than a valued member of both the school and the community. I am positive many saw us as ungrateful because we wanted what she was entitled to – an education with her peers.

So, with no other choice and to give her some future she is joining the bus journeys that take place across the country every day to the special schools. She is being segregated because we have no choice and we have had to find another box to cram her into. All this to try to educate her in this broken and archaic system. This will only continue the attitude that Irish society has about people with disabilities, “out of sight – out of mind”, and continued lack of social integration.

The situation only gets more disheartening after school finishes and most teenagers and young adults with disabilities are left isolated from their peers – because they have already been isolated and segregated from the beginning of their lives. There are very few, if any, vocational educational programs available or job programs for school leavers with disabilities. Once again it is left to the parents to provide support and source opportunities for their offspring.

In summary, the current system is broken.  Gandhi said ‘The true measure of any society can be found in how it treats its most vulnerable members’.  In the case of Irish society our treatment of people with disabilities in particular is a very damning indictment on everyone.  The state cannot continue to abdicate responsibility at all levels to others. Ireland already has a long, sordid history of neglect and abuse and this is not changing in any measurable way until there is significant investment in the resources needed to ensure our people with disability are embraced, supported and valued in a meaningful way from the very beginning. This needs to start with education, the basis for any meaningful change always starts with education and moulding the views of disability from a very early age.  I am wondering – when will that time come? Hopefully in my daughters’ lifetime.

Marina GiblinMarina Giblin is a mother to a child with 18q syndrome. She is founder of Irish Education Rights Alliance, which is a parent advocacy lobby group looking for accountability and equal opportunity for Irish children to an education.

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