Rose Conway Walsh (Sinn Fein)
Link to this: Individually | In context | Oireachtas source

I thank the Minister for coming to the House on this very important issue. I want the Minister to understand the real hardship that faces parents of children with autism who have no care options in their local area. I refer specifically to Mayo, Galway and Roscommon. The lack of services and the huge waiting lists for everything, from occupational therapy to physiotherapy to respite, is completely unacceptable. Autism services are constantly put to the bottom of the pile and everything is a battle. Parents just do not know whom to go to for help and the confusion that exists is a large part of the problem. Parents are trying to find out whom to contact but are sent from Billy to Jack and back again.

There needs to be clear information regarding the new amalgamation of services. Who is responsible for what? Parents have no idea whom they are supposed to contact for therapy. There is a lack of resources and we need to know where the money is going. We need to know why many cases are not reached because many children and families who are living with autism do not even get the resources that are available. Parents tell us of being on lists for respite care for between two and three years but now they are told it will be years before they get the respite they need. They are asking why children with ASD in Mayo are prevented from having one-to-one intervention with a clinical psychologist or counselling of any type. Children with ASD are shut out from the community psychologist and from CAMHS, which will not provide it as it says it is for the Western Care Association to do so. Children with ASD who have mental health issues cannot get this type of intervention either, which is causing serious problems because children and adults with autism who are developing mental health challenges are not being dealt with in time.

There are good examples of emergency care but where children and young adults display mild mental health difficulties they need to be caught at an early stage, rather than allowing the problem to escalate. Given the cost of private classes, for example for speech therapy and occupational therapy, and the travel associated with accessing them, does the Minister accept that this is not an option for many families?

To list out services available at high cost and at long distances from these families means nothing to them as they are already really struggling. I know of two girls in Mayo who have autism and are non-verbal. Both attended the mainstream national school and are getting on well, as many of these children do when they are in the right setting and get the right supports. The children saw a speech therapist eight or nine times over a period of two and a half years through the Western Care Association. For the past 18 months, however, the girls' parents have been paying privately for speech therapy. They had no choice but to do this or they would lose what they had gained from the classes they had already attended. This is leaving families in real poverty because they do not have the money for these badly-needed services. They want to see leadership from their politicians, not empathy and not excuses.

The system is complicated. Children come under the Western Care Association when they start school but are then transferred to the HSE. Parents are in absolute desperation. It is not only young children but it goes right through the life cycle. There is a huge difficulty when children reach the age of 18 and are told they are not in somebody's remit. I ask the Minister to understand what services are there and to make people accountable for providing them. I also ask him to make it clear to parents where they can go and to give them the support that is needed. I want to work with the Minister to sort this out for Mayo and the west so that children are not left behind with their families in desperation.

Finian McGrath (Dublin Bay North, Independent)
Link to this: Individually | In context | Oireachtas source

I thank Senator Conway-Walsh for raising this issue. I also commend the Senator on her work with and interest in children with disabilities. The Senator is deeply involved in the issue of services for people with disabilities in the Mayo region and I met her recently with some of the families. Many of the concerns the Senator has raised are hugely important to the families. This gives me an opportunity to outline the position on the provision of autism services for people in the west of Ireland.

The HSE have informed me that the autism spectrum disorder, ASD, service in Athenry was established in 2014 with a multidisciplinary clinical team of six. The service provides diagnostic assessment and intervention for children aged six to 18 without an intellectual disability for both counties. At present, there are 71 children on the waiting list for assessment and just under 100 children on the waiting list for intervention. The team also supports an open caseload of just over 350 children. Children accepted to the service stay with the team until they turn 18 years of age. They then go on into adult services.

The team in Athenry currently stands at 3.5 whole-time equivalent posts due to unfilled maternity leave and parental leave. The good news is the service's staffing should increase to 4.9 whole-time equivalent posts next week. A waiting list initiative has been in place since March 2017 to provide some extra resources and to reduce waiting times. This initiative has supported 32 children through speech and language therapy and 54 children through the ASD waiting list initiative.

The HSE is currently engaged in the reconfiguration of existing therapy resources under the national programme on progressing disability services for children and young people. The aim of this programme is to bring about equity of access to disability services and consistency of service delivery, with a clear pathway for children and their families to disability services regardless of where they live, what school the child attends or the nature of the individual child's difficulties. This is an important point.

The ASD service in Athenry will be reconfigured under the progressing disabilities for children and young people programme. The reconfiguration has begun with the transfer of children who are under the age of six to early intervention. This was done in February 2017. Children with autism who have an intellectual disability receive services through the voluntary agencies across the community health organisation area CHO 2. In County Mayo, autism services are provided under the auspices for progressing disability services from birth to 18 years, and children are prioritised based on level of need. This is a multi-agency partnership approach.

I will bring the issues raised today by Senator Conway-Walsh back to the HSE with regard to disability services in Mayo.

Rose Conway Walsh (Sinn Fein)
Link to this: Individually | In context | Oireachtas source

I thank the Minister of State for his reply but I believe those words mask what is happening on the ground. I will finish with a quote from Amanda McGuinness, a parent who works with voluntary autism services in Mayo, who wrote:

Essentially the voices and the futures of children are being stolen from those as a direct result of the lack of therapy available. It confounds me that the Government do not see the problem that will befall society in years to come when all of these children are adults and have little or no life skills, are unable to care for themselves and have sent their parents to early graves from the stress and the worry.

We need to listen to those words and we need to make sure that the words the Minister of State speaks in the Seanad today, and the words that are so often spoken over the years, materialise into proper services and supports for parents of children and young people with autism.

Finian McGrath (Dublin Bay North, Independent)
Link to this: Individually | In context | Oireachtas source

I thank Senator Conway-Walsh for making that point. It is absolutely my duty, as the Minister of State with responsibility for disability issues, to listen to the words of those families. I wish to reassure Members that the Government's ongoing priority is to ensure access and provision of services for people with a disability. In the context of recent debates on the Estimates for the budget, I note that in 2018, funding of €1.772 billion has been provided for health, for personal and social services and for a wide and complex range of services and supports for people with a disability. This is €91.9 million more than was available last year. This year we are providing more than 8,300 residential places through the HSE, as well as emergency supports for 385 people. We also will support 182,000 respite nights and 42,500 day respite sessions to families in need across the State.

I recognise that first-class early intervention services for children with a disability are paramount. I accept the Senator's arguments. The services need to be improved and organised more effectively. This process has now started and is under way nationwide. Health-related therapy supports and interventions for children with a disability are continuing to be developed. I do not do empathy. I do not do excuses. I do, however, accept the Senator's point that we must have accountability and to invest in the services. My vision for disability services is to invest in and reform the services but above all, to put the person and the family at the centre of the service.

Denis O'Donovan (Fianna Fail)
Link to this: Individually | In context | Oireachtas source

I thank the Minister of State for his comprehensive reply. A good case was made by Senator Conway-Walsh on an important matter.