Holly Cairns (Cork South West, Social Democrats) | Oireachtas source

I welcome this motion and thank Deputy Tully and Sinn Féin for giving us the time to discuss this vital matter. It has been three weeks since the most recent motion on disability services for children and young people. Since then, things have got worse, not better. The High Court judgment has found that the 90-minute assessments are unlawful under the Disability Act 2005, affecting more than 10,000 children and their families. It was revealed that none of the 91 CDNTs were fully staffed. It has also come to light that the HSE is using an outdated database to track needs identified in assessment reports. These revelations are piled on top of the already substantial failures to properly assess and treat children with disabilities in Ireland.

Services are a geographical lottery. Children are waiting months for therapy appointments. Countless families are forced to pay privately for services and communities need to fundraise for supports the State should be providing.

Among all of this, two overarching issues need to be addressed immediately: the waiting lists for assessments and therapies, and the geographical variation in services.

The NGOs working in this area provide incredible support to families but they have also assembled research into the experiences of progressing disability services which further establishes the current failures of the system. Down Syndrome Ireland’s recent survey of 433 members, nearly one third of its members with a child aged zero to 18, found that 44% had received no therapy of any kind in the last year. Some 44% of children with Down’s syndrome received no therapy, and this is just the national average. There are regional variations, with the Cork-Kerry area, CHO 4, being the worst. Some 64%, almost two thirds of children in this survey, did not receive any therapy - no speech and language therapy, no occupational therapy, no physiotherapy – and those figures are even higher for each therapy. A survey from AsIAm last year, with 454 responses, found that 42% of families have had to wait more than two years to receive an autism diagnosis for their child, while 79% said they were not in receipt of any support from either the early intervention or school age teams. Inclusion Ireland’s recent survey on progressing disability services found that 85% of over 1,000 families have waited or continue to wait for more than a year for a service. Each one of these statistics is a child or young person who is entitled to therapies and supports. Each one is a family that is distressed and frustrated.

In response to a question of mine last week in the children committee, the HSE revealed that not one of the 91 children's disability network teams was fully staffed. As I pointed out then, a partial team is not a team. The latest figures I have for the Cork south-west community disability network teams, CDNTs, from December, show that the Kinsale-Bandon-Carrigaline team is short a physio, two occupational therapists, 0.5 of a speech and language therapist and two psychologists. In fairness to the Minister of State, Deputy Rabbitte, she has secured funding for additional staff but the HSE is now citing recruitment issues. The CEO described how recruiting health and social care professionals is a real challenge. He outlined a plan to recruit 190 staff this year but, at the same time, only one specific CDNT speech and language therapy post was advertised on the HSE website.

Working conditions and strains mean the recruitment and retention of staff is difficult. The treatment of student healthcare staff is very poor, and student nurses, midwives, occupational therapists, speech and language therapists and others receive very little or no pay. There needs to be a larger review of how the HSE attracts and values clinical staff. However, there is a very real chance that teams staffed at the planned levels will not address the significant challenges. Even when the HSE was carrying out the much shorter 90-minute assessment, there were substantial waiting lists. The HSE will now have to return to the proper assessment of need clinical process, which takes up to 29 hours on average. This will obviously require more resources and staff time so will the HSE be recruiting more clinical practitioners?

The HSE basically told the children committee that this will result in substantial impacts on the provision of therapies. It contends that meeting its legal obligations on assessment, which it has failed to do for more than two years, will take away from therapeutic services. This is a truly terrifying prospect for families. According to the HSE position last week, things are going to get much worse for children and young people with disabilities. The Minister might clarify in his closing response whether the current planned staffing levels will have to be adjusted to cater for the provision of full assessment of needs.

Communication is another major issue for families. Rare and infrequent contact from the HSE only adds to the worry of parents. Down Syndrome Ireland’s survey found that 40% of respondents had no communication from the HSE in the past 12 months. The letters which do arrive are described as system focused rather than child and family focused. Families need clear information on when their child will receive services and supports. Inclusion Ireland has recommended that an external agency or parent steering group could “parent proof” letters and communication to families to avoid further distress and confusion. Often, it is online groups and informal networks which offer the best advice and guidance for families, not the HSE.

This situation also highlights the need for family forums. Despite the aspiration towards making disability services more family-centred, it is not the case. Family forums are supposed to be a part of progressing disability services but these forums are not functioning. The Cork parents' advocacy network contacted me after repeated failed attempts to meet with the head of disability services for counties Cork and Kerry. Many family forums in CHO 4 have yet to even be established. Can the Minister provide clarity on when all of these forums will be established and the plans to support their effective running as meaningful measures?

Parents are distressed and angry; they are tired and despondent. Every service, every appointment, every piece of equipment is a struggle. As well as the 100 other things a parent has to worry about, they lie awake at night anxious about the therapies and supports their child is not getting and the impact it will have. Parents save and sacrifice to get private appointments because they know that public service is inadequate. They are exhausted. One parent in the Down Syndrome Ireland survey summed up the situation for so many families: “The whole process around PDS has been extremely stressful and the fears I highlighted have become a reality and my child is left without supports at an age when there is so much potential to support her if right supports are given.”

Part of the problem is the fractured nature of services. Therapies are with this Department, transport with another and school supports with another. Each one has a different form, a different phone number, a different policy. Parents are overwhelmed with the number of offices and bodies with whom they have to interact. Today’s motion rightly calls for a joined-up cross-departmental strategic workforce plan across health and social care services. Families, parents and grandparents should all know they will be supported. They should know that the State and HSE have their backs. Instead, they have to fight ten different offices for basic services. The changes required here are massive and radical. They need substantially more staff and a new way of supporting children and families. However, these improvements will be hard won. The 90-minute assessment of need was opposed by clinicians before it was introduced. Families and advocates quickly highlighted its shortcomings. A Dáil motion condemned the practice but it took a High Court case for the HSE to implement correct procedures.

Another worrying indicator is the absence of the Minister for Health in these debates. I am glad he is here to contribute to this one as it is a very pressing issue that affects many families. Especially after a major High Court ruling showing how the HSE failed more than 10,000 children, it is good to see him here. I am not sure what his priorities are in his brief but, so far, disability does not seem to be among them. That in no way detracts from the leadership and dedication the Minister of State, Deputy Rabbitte, has shown in this area. However, it is clear from the challenges facing the health service in this area that the senior Minister needs to be more involved and present.

Progressing disability services was supposed to replace the previous system where accessing services often depended on where people lived and how rich they were. The HSE has unfortunately replicated this system. It is still a geographical lottery and families that can afford it turn to private providers, while those that cannot have to wait, potentially for years. Children and young people are entitled to the services they need. That is not only our commitment under international law; it should be our moral code as a society. Families and communities are doing all they can. It is time the HSE and the State did their part as well.

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