Verona Murphy (Wexford, Independent)
Link to this: Individually | In context | 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?

Frank Feighan (Sligo-Leitrim, Fine Gael)
Link to this: Individually | In context | Oireachtas source

I the Deputy for raising this important matter for discussion. On behalf of my colleague, the Minister of State, Deputy Rabbitte, I restate this Government's commitment to children and young people with disabilities, as well as their families. The Deputy talked about Leo Dixon and the fact that a letter spent nine weeks on a desk. That is simply unacceptable. The Deputy was involved in the private sector and ran her own haulage company. It is very difficult to stand over a letter spending nine weeks on a desk. That is certainly not the way a Department or service should be run, leaving aside all of the other issues the Deputy outlined with regard to the wheelchair and so on. The Minister of State, Deputy Rabbitte, accepts that the HSE has faced considerable challenges in parts of the country in the implementation of the progressing disability services programme. This has resulted in delays for families in accessing much-needed therapies for their children. Historically, children's disability services have been provided by a range of statutory and non-statutory service providers and the type and level of service provided varied widely across the country.

The progressing disability services, PDS, model seeks to address the previous unacceptable inequity in service provision where there may have been an excellent service for some children and little or no service for others.

As the Minister of State, Deputy Rabbitte, has stated previously in this House, the reconfiguration of children's disability network teams, CDNTs, across the country has been challenging, particularly in the context of staffing. To illustrate these challenges, the HSE recently undertook a national children's disability network team staff census, which highlighted that the CHOs are, on average, operating with a 28% vacancy rate. The unfortunate reality is that there are recruitment challenges due to the significant availability of new posts across the health and social care sector, both public and private. These staffing issues have resulted in delays for families to access much-needed therapies for their children, delays which have caused untold stress and justifiable anger on the part of these families. That anger is understandable and, once again, on behalf of the Minister of State, Deputy Rabbitte, I wish to put on record the Government's sincerest apologies to any family experiencing such delays.

Such delays are simply unacceptable and need to be overcome to ensure delivery. In that regard, the Minister of State, Deputy Rabbitte, is currently engaging in a series of meetings with the heads of disability services across the nine CHOs to hear what is happening on the ground in their respective areas. It is expected that these discussions will provide the Minister of State, Deputy Rabbitte, with further detail on the challenges being encountered and, it is hoped, will generate potential solutions.

The Deputy will also be aware of the recent High Court judgment on the assessment of needs process. The Minister of State, Deputy Rabbitte, is attending a day-long workshop tomorrow, the aim of which is to develop new interim guidelines to support the assessment of needs process and guide front-line staff. This workshop will be attended by key stakeholders, including senior HSE officials, Department of Health officials and representatives of professional bodies. Most importantly, children and young people will also be represented in the form of parents' representatives. In the interim, the use of the standard operating procedure as part of the assessment of needs process has ceased and practitioners will use their clinical judgment in relation to ongoing assessments. As we begin this process, we need to reaffirm that the assessment of needs is only the first stage of a journey towards vital therapy supports. The Minister of State, Deputy Rabbitte, remains committed to ensuring that the journey is made easier for families throughout the country.

Verona Murphy (Wexford, Independent)
Link to this: Individually | In context | Oireachtas source

I did not expect anything else and I am not saying that I doubt the bona fides of the Minister of State, but the answer is always the same. The answer is always just another network or it is a staffing issue, but we never seem to get to grips with the staffing issue in such a way that we would outsource it or consider critical skills permits. I have been saying this so repetitively on the floor of the House that even the Ceann Comhairle must be sick listening to me. An apology just does not cut it. As already stated, I do not doubt the Minister of State's bona fides but the apology will not buy the wheelchair or provide the wheelchair.

Next Wednesday, I am taking little Leo Dixon up here to the Dáil because he wants to sit in the Minister of State's seat and he wants to sit in the Minister's seat, given he is from Arklow, County Wicklow, in the Minister's constituency. While he is sitting in their seats, I very much hope that they will sit in his - a wheelchair not fit for purpose - for the eight hours a day that he sits in it, and then see how quickly he will get his wheelchair. Is it not a disgrace that an eight-year-old boy had surgery on his neck that has to be redone because he did not get the physiotherapy he was entitled to and because they had not provided a wheelchair that he should have had to assist him? What is wrong in this country that we have this total lack of services? It is beyond belief at this stage.

I spoke to families who held a rally outside Dáil Éireann last week. I met them in Wexford when they held a rally in Enniscorthy. There were some 30 families with placards stating that the HSE is letting their children down; there were lots of different placards but not one was positive, I can assure the House. The reality is that much of it is to do with the new CDNTs but this child has been suffering for nine years. He is going to be here next Wednesday. The Minister of State can use his two minutes to tell me when Leo will be getting his wheelchair. That is the question.

Frank Feighan (Sligo-Leitrim, Fine Gael)
Link to this: Individually | In context | Oireachtas source

I thank the Deputy for articulating the details relating to this very difficult issue. As stated, progressing children's disability services is the policy underpinning children's disability services. All 91 CDNT teams are now established and while I know they are challenged with recruitment and retention issues, they are in place and the Minister of State, Deputy Rabbitte, is continuing to engage with the HSE to fill the vacant posts and to progress the service provision.

This has never been a question of a lack of financial commitment. The Government has provided significant funding to the HSE for new posts in recent years. Since 2019, almost 500 additional whole-time equivalent posts for children's disability services have been allocated. However, for various reasons, filling these posts has proven to be incredibly challenging. I know the various CHOs have prioritised filling these posts as a matter of great urgency. In addition, the Minister of State, Deputy Rabbitte, has begun discussions with the Minister for Higher and Further Education, Research, Innovation and Science, Deputy Harris, around improving the disability workforce supply in the longer term.

I will bring the Deputy’s comments back to the Minister of State and inform her that this young man is coming to Leinster House next Wednesday. The Deputy talked about a new wheelchair. I will raise this in the Department as quickly as possible in the morning to see if anything can be done. On behalf of Deputy Rabbitte, I would like to restate her commitment, as Minister of State with responsibility for disabilities, to strive for the best services possible for children with disabilities and for their families. On this occasion, the best service has not been provided. I will bring that issue and the Deputy's concerns back to the Minister of State.

Seán Ó Fearghaíl (Kildare South, Ceann Comhairle)
Link to this: Individually | In context | Oireachtas source

I do not think anyone could question the commitment of the Ministers of State, Deputy Feighan and Deputy Rabbitte.

Verona Murphy (Wexford, Independent)
Link to this: Individually | In context | Oireachtas source

I have acknowledged that.

Seán Ó Fearghaíl (Kildare South, Ceann Comhairle)
Link to this: Individually | In context | Oireachtas source

I know the Deputy is not doing that. What the Deputy said is heart-rending. The Deputy should engage with the two Ministers of State. I invite her to table this issue for consideration in the next few weeks so we can see what advance has been achieved.

Verona Murphy (Wexford, Independent)
Link to this: Individually | In context | Oireachtas source

I appreciate that. I do not want to put a young boy of nine years of age in an uncomfortable position, but he wants to come here. I hope we will have resolved the matter by then.

Seán Ó Fearghaíl (Kildare South, Ceann Comhairle)
Link to this: Individually | In context | Oireachtas source

If we have any humanity at all - and we all have - we appreciate the significance of this. Bring it back to us if the HSE, which is the service provider, does not address this.