Dáil debates
Wednesday, 15 February 2023
Saincheisteanna Tráthúla - Topical Issue Debate
Services for Children with Disabilities
9:12 am
Matt Carthy (Cavan-Monaghan, Sinn Fein)
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I am renowned for my brevity so I will try and keep it that way. I sincerely thank the Minister of State, Deputy Rabbitte, for taking this debate. It relates specifically to the issue of respite services in Cavan-Monaghan. She will agree that respite can make a huge difference for the family of a child with disabilities. It is good for the child, it is good for the parents and it is good for the siblings. It is an essential relief that ensures families can continue caring for their own child at home, but with a break to address other responsibilities, catch up on sleep, and provide everyone with a bit of respite. There are a number of issues with respite services in Cavan-Monaghan. For example, there are no such services at all for children in County Monaghan. When the service in County Cavan operates, it operates very well, but it only operates every second week for children.
There is also a particular issue relating to the criteria-statement of purpose used by the HSE in Cavan-Monaghan. This is relatively new information to me. While I had often made representations and inquiries on behalf of families seeking respite for their children, I was unaware that different criteria are being used in different regions to determine whether a child can access respite services. In Cavan-Monaghan, the HSE has the strictest criteria-statement of purpose for respite care. It states a child must have a diagnosis of moderate or severe intellectual disability to be even considered. That is not the case in neighbouring counties. For example, according to the HSE response to my parliamentary questions, in counties Sligo and Leitrim the eligibility for a child to access respite care is that the child is known to the children's disability network team, CDNT, direct approval has been made by the children's referral committee and the HSE respite co-ordinator must complete a determination of needs assessment. In counties Louth or Meath, a committee in place bases its decision on the following rationale: children who access services in their respective CDNT, children in the care of the Child and Family Agency, Tusla, and children who live with families where there are multiple instances of disability. Importantly, it also includes children who present with significant behavioural challenges.
Essentially, children and their families are being discriminated against based on where they live. When it comes to disability services, above all else, that is not tolerable. I am dealing with one particular family and it is an acute case. The child does not meet the criteria that have been set out for moderate or severe intellectual disability. However, the child has disabilities and profound behavioural and other issues. The child and the family need support. They are going through a horrendous time. The child has not been able to access appropriate education, despite repeated efforts. The family is also going through other issues. Another family member is sick and in long-term hospital care. The Minister of State can imagine the pressure the child's mother is under, yet none of that is taken into consideration in respect of respite care. I have been told by the HSE that it is reviewing the criteria issue. Will the Minister of State give a commitment that it will be expedited, and will she agree to meet with this family to hear first-hand how the current policy is impacting them?
Anne Rabbitte (Galway East, Fianna Fail)
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I will also be known for my brevity. Yes, I will agree to meet the family concerned. I will also take this matter up, before I meet with the family, if the Deputy will give me the case details. While he may feel this just applies to the Cavan-Monaghan region, as far as I am concerned, it is hard to believe and credit in the 21st century that the behavioural barrier is still in place in a lot of places around the country. Depending on the particular provider or organisation, its mission statement might be that it only supports individuals with mild to moderate intellectual disabilities but does not stipulate that it will support children who have behavioural issues. Recently myself and the Leas-Cheann Comhairle read an article from Galway regarding a family who needed access to respite. We know the value of respite. Respite can never ever be underestimated in its value to support a family. Deputy Carthy's area of Cavan-Monaghan is quite an anomaly in the context of the country.
Children's respite care is provided every second week for both counties out of one building, the Annalee View Respite Centre. I cannot fault the staff there but they can only do it every second week. It is my ambition to address the lack of children's respite care in the Cavan and Monaghan area. The Deputy happens to be in community healthcare organisation, CHO 1, which covers a large number of counties. It covers Leitrim, Donegal and Sligo as well as Cavan and Monaghan. We have a plan to address children's respite services. Our first move was to source funding for Little Wonders Early Intervention Centre to allow it to provide after-school services for children in early years services with a preschool element. We have put something in place since I met the Deputy last year. That was put in place in September 2022. The plan is to scope out a proper, fit-for-purpose house to meet the needs of children that will have two front doors. One door will be for children who have mild to moderate issues and can have easy compatibility with other children. The second front door will be for children with complex medical and behavioural needs who might not be compatible with other children. We are using this model on the east coast and it is working well. We need to have a service that, rather than providing 840 bed nights in an entire year, is working seven days a week, 52 weeks of the year.
9:22 am
Matt Carthy (Cavan-Monaghan, Sinn Fein)
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I thank the Minister for her response. We are at one in respect of where we need to get to and I welcome that. However, for the family I am dealing with now, time is of the essence. I fear that childhood is being impacted and also the well being of the family. If one was to try and make this family's life more difficult, sometimes the responses of the agencies could not do a much better job. One of four children was attending a day respite care service in County Westmeath every Saturday and the child got word without any notice that their placement was being discontinued because they were considered not to be compatible with the service being provided. The Minister of State can imagine the conversations that we are having with this family. That is why I welcome the fact that she has committed to meet with them. We recognise how difficult these issues are but they need to be expedited. I welcome what is being talked about regarding building and expanding the services. The provision of more beds is crucially important. There needs to be a full-time, 52-week of the year operational facility in both Cavan and Monaghan. These are two large counties and I can promise the demand will be met
As a matter of urgency, we also need the criteria to change to allow for discretion in the decision-making process. Anybody who has an ounce of compassion, never mind common sense, will agree that in this instance, there has to be a mechanism for this child to have respite care and for the family to have this support. The discretionary element is simply not there at the moment. I urge the Minister to talk to the appropriate officials to change that in the first instance. I will send her the relevant details on to the matters I have raised.
Anne Rabbitte (Galway East, Fianna Fail)
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Later on, and not because we are having a Topical Issue debate this morning, I am meeting CHO 1 officials as part of my monthly meetings. I will bring up the point about the discretionary element the Deputy has raised. In the case that the Leas-Cheann Comhairle and myself are aware, the child was not on the radar whatsoever of the disability manager in that region. I will raise that in my meeting with CHO 1. Discretion is required. Children should not need a diagnosis if the CDNT knows that a family is in crisis. The circumstance for the carers has changed and the carers need support. The mother must be at the end of their tether trying to support her partner and the other children and still have a child who needs 150% support. The Deputy is correct to raise this matter. Discretion is required at all times and compassion needs to be part of it. In order for the relationship not to break down and in order for us not to have emergency cases where children end up going into full-time residential care, which is not what anybody wants, we need to support the family and the siblings. If the child is non-compatible with the other four, we need to make other arrangements. We need to be flexible and pragmatic. That is my ask of the HSE. Farming children out from one county to another is not how we do business. It is all supposed to be about closest to home, building that relationship and ensuring the children have the support in their own community. Sending a child from Cavan or Monaghan down to Westmeath is not good practice. It tells me that the CHO is under-resourced and does not have enough funding to support the children in its own area. We have a similar situation in County Meath. It is hilarious to think that all the providers in Dublin buy properties in Meath but Meath is not able to fund or support any of its own. We are changing that this year. I will look to do exactly the same with the children's services in the Cavan-Monaghan area