Verona Murphy (Wexford, Independent) | Oireachtas source

I thank the Minister of State for coming in. We are in the midst of a catastrophic crisis in child disability services. The lack of early intervention is detrimental to our children and will result in teenagers and young adults with extreme and complex medical issues and needs arising from the neglect of this Government and the Department with regard to continuing staffing issues. Although the Minister, Deputy Stephen Donnelly, is not here, he did recently meet a mother, Susan Dixon. She has sent me an email which was cc'd to the Minister and which I have to put on the record:

My son Leo has an extremely rare form of bethlem myopathy muscular dystrophy, a completely unique variation. Its a progressive muscle wasting disease with no cure and no treatment. Therapies are essential to maintain ... his mobility and his independence.

[He] has attended hse services since he was 6 weeks old. He then moved to Enable Ireland services when he was 3. He needs a multi disciplinary team of physiotherapy, occupational therapy and speech and language therapy. ... [While we] completely understood that covid halted some of the therapies ... my sons condition did not go away when covid arrived.

The issues I'm about to outline are not covid related, they are staffing, management and funding related.

Over the past 2 years my sons condition has progressed to a point where he depends on a wheelchair to attend school and manage any distances. We accepted a temporary chair in April 2021 with the promise of his own chair correctly fitted and appropriate for his [personal physical] circumstances. We had a seating assessment in January 2022 and at this appointment we were informed about the extremely long wait for funding from the HSE. I explained at the time the urgency of this chair as my son is no longer able to self propel in [his] chair, it's too heavy. The Chair itself was second or third hand by the time it got to us and is in a shocking state. The brakes don't work, the handles used to push him are broken and taped into position and the wheelrims are so worn that when he does try to self propel he gets metal splinters and cuts on his hands. It is a health and safety risk and is not fit for purpose. ... My son needs his wheelchair its that simple. I need someone to make a phone call, write a letter or send an email anything to help my son regain his independence.

She cannot afford to replace it but she wishes she could. She also wrote:

We were then informed, when I pushed for answers, that this paperwork was left on a desk for 9 WEEKS before it was finally sent to the HSE for funding approval, due to staffing issues. ... My sons independence is GONE.....he is 9 years old and might as well be in a buggy, he has to be pushed around everywhere he goes. He can not be left unattended in the chair as the brakes don't work and if he rolls he hasn't got the strength to stop himself. ...

I feel my son is just one of thousands of children that have been forgotten about, pushed aside. ... He had [a neck injury] in August 2021 and was in a neck brace for 10 weeks. His consultant requested he attend intensive physio for the 10 weeks (2 sessions a week) ... .we got 6!!!!!

:I cannot finish the email but it gets even worse. I am going to run out of time. As part of the Department, the Minister of State is fully aware of how shambolic the situation is. Every week, we get letters telling us that services are following the HSE recruitment process but do not have staff. For two years, they have had not had staff. I am reliably informed that we do not even have enough graduates coming out of college this year to take up the slack. When is this going to improve? Who is going to get a wheelchair for Leo Dixon?

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