Health Services Executive (HSE)
Review of services for those with Progressive Disability 0-18 years.
Monday 12 December 2011 Naas
Meetings were organised by the HSE in the Kildare and West Wicklow area for parents with children with progressing disabilities. Over the last few years it had become apparent that disability services delivered by the HSE and non-statutory organisation had developed independently over time and there was a wide variation in the services. As a consequence of this, some children and their families have little or no access to services. I did inform those at the meeting that we had done a survey of Friedreich’s Ataxia children and that most parents felt their children were getting inadequate physiotherapy at present
I went with the expectation that I might find out what would be available for Friedreich’s Ataxia children and young adults. However, it was not possible to find out what was available at present and no figures were presented. Carol Cuffe, HSE, chaired the meeting and told us of the plans the HSE had to implement changes. She sought an expression of interest for participation from parent sub-groups who would have the opportunity to submit feed-back, suggestions, and opinions on the project from a parent and user perspective. They specifically did not want Patient Organisation representatives. I do not have a child aged between 0-18 years so I was not eligible but if anyone is interested in their name going forward, please get in contact and I can forward you the relevant form.
I did ask that I be kept informed of developments in the Local Implementation Group by email and I will make that information available on the FARA Ireland website as it comes.
Mary Kearney, December 2011.