Dáil debates

Thursday, 21 July 2016

Topical Issue Debate

Autism Support Services

4:10 pm

Photo of Mary ButlerMary Butler (Waterford, Fianna Fail)
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Autism has been in the news frequently. Last week, a report from the National Council for Special Education stated one in every 65 schoolchildren in the State has a diagnosis of autism, a figure that is much higher than the one in 100 estimate just three years ago. Despite that, it seems to be increasingly difficult for some children to get the services they need. That has certainly been the experience I have come across in Waterford and the south east.

I was recently contacted by several parents whose children have autism and access a specialist cross-functional autism spectrum disorder team based in Waterford. They have learned, to their utter disbelief and shock, that the team is about to be disbanded.

I will read from an e-mail I received.

I met with my son's speech and language therapist yesterday who told me she’s not allowed to see him anymore as the autism team has been disbanded. There is now no autism-trained speech therapist or occupational therapist that is allowed to see the autistic kids anymore. His speech therapist... has been given a different job that’s not autism related, as has his occupational therapist. Basically, kids with autism have all been put under the same section as all other disabilities. You will be seen according to where you live. Each area has only one speech therapist and that therapist is not autism trained and my son now has to go into her waiting list to see her. More waiting lists! I was told it could be longer than a year before he sees her. The therapists from the autism team are extremely unhappy as they believe that autistic kids need specific help in communication and occupational therapy to help them for their future. How can they learn to communicate if their therapist doesn't understand the way they think and communicate in their own ways? You need to know how to get them out of their little shells which a general therapist will not know how to do.

The autism spectrum disorder team in Waterford have been working miracles with the little resources that are available to them. This specialist approach with cross functional teams working together has shown great results. In addition to the children’s normal sessions this team run training courses for parents which include Early Bird and the Hanen programme. The ASD team also run a number of workshops such as feeding, visuals, sensory processing and sleeping. These training courses and information sessions have been tremendously useful to the parents and are invaluable in relation to supporting parents.

It’s not easy to hear the news that your child has autism, and realise that your life will be utterly different than you had expected it to be. Daily life with a special-needs child presents many unique challenges. How do you come to terms with the fact that your child has autism? How do you cope once you get over the initial shock? This team in Waterford has filled the void and the support they are giving to the children with autism and their parents and guardians cannot be underestimated.

I also have a constituent who has a daughter aged 11 with autism. She had been advised in December that her daughter’s case was considered urgent and to have a psychological review undertaken. She has been trying to arrange that for her daughter and when she spoke to someone in the HSE recently, she was told that those services have been cut for children aged between six and 18 years of age. She was also advised that there is no alternative available nor are there plans to have a suitable resource replacement. Could the Minister of State explain what is going on? Why are the services being cut back? How can that be considered fair?

4:20 pm

Photo of Finian McGrathFinian McGrath (Dublin Bay North, Independent)
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I thank Deputy Mary Butler for raising the issue. I am pleased to take this opportunity in update the Deputy on the provision of supports for children with autism in the south east and in particular the services available in Waterford. The Programme for a Partnership Government commits the Government to improving services and increasing supports for people with disabilities, particularly for early assessment and intervention for children with special needs. Since 2014, the roll-out of the HSE’s progressing disability services for children and young people from zero to 18 programme has entailed targeted investment of €14 million and the provision of 275 additional therapy staff to increase services for children with all disabilities, including children with autism. This national project is currently under way with the aim of providing services to children with all disabilities to be delivered by the children’s disability network teams. They will be based in the community and each child will be allocated to the team nearest their home

address. Services will be needs led rather than diagnosis led. That is to ensure equity of access across Waterford and throughout community health care organisation, CHO, 5 and also across the country. It will also provide a standardised holistic, family-centred service to children and their families.

The autism spectrum disorder, ASD, specialists will be assigned to the children’s disability network teams and will work from within the teams, rather than as a standalone service. That will mean children will continue to receive the intervention required, even when wait-listed for ASD diagnosis. Children with autism spectrum disorder will continue to receive intervention and families may avail of parenting workshops as appropriate from the network teams. A small cohort of children with autism and complex needs may require one-to-one intervention and that will be delivered by the ASD specialists. In future, there will be only two pathways for all children, including those with autism, through primary care services or through the children’s disability network teams. The HSE provides a range of services for children with autism which may include the following: assessment diagnosis, therapeutic intervention, nursing support, respite services and home support services. Access to service is based on the referral criteria, prioritisation and the particular service model within each discipline required, for example, psychiatry, psychology, occupational therapy, speech and language therapy, physiotherapy and social work services. They are the issues on which we need to focus.

In addition, the HSE may provide grant aid funding to voluntary groups and autism support groups. Support can come from other parents or guardians who have children with ASD and from autism support groups. The key objective is to achieve equity of access and consistency of service delivery, with a clear pathway for children with disabilities and their families to services, regardless of where they live or go to school or the nature of the individual child’s difficulties. I am confident that the additional resources being invested in both primary and disability services will have a positive impact on the provision of clinical services to all children with disabilities, including autism, and those who may currently be on waiting lists. I accept Deputy Butler's point that there is a problem in that regard and I will deal with that later. There are waiting lists to access therapy inputs not just in the south east, but across the country.

Photo of Mary ButlerMary Butler (Waterford, Fianna Fail)
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The Minister of State said that the autism spectrum disorder specialists will be assigned to the children's disability network teams and they will work from within the teams. I am sure he is well aware that children with ASD have considerable difficulty with change. They take a long time to get know people, places and routines. Anything that upsets that makes the challenge they face even more difficult. The parents are shocked that the HSE has adopted such an approach knowing the damage it can and will do.

Everyone knows that resources are limited. However, there is a dedicated team that is getting great results which supports children and parents on an ongoing basis. The question is why consistency is being replaced with disruption and why specialist skills are being replaced with general skills. Could the Minister of State clarify whether there will be longer waiting lists if the children change to children's disability network teams and that the children will not have to go back to the start again? There is considerable concern in Waterford among parents about the potential effect on their children. What effect will the change have on the children? Is the approach being taken best practice? Could the Minister of State ensure that if services are reconfigured that no child will lose out, even temporarily?

Photo of Finian McGrathFinian McGrath (Dublin Bay North, Independent)
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I share the Deputy's concerns about services for children with autism. This morning, I met with Irish Autism Action and many of the same points were made to me. I gave a commitment that I would go back to the HSE and the various Ministers within the sector to deal with the issue. I have an open mind on it. I accept what was said by the Deputy. I do not say this lightly, because I know the facts about the situation in Waterford. There was an excellent team there of one speech and language therapist, one occupational therapist, one liaison worker and three psychologists but there was a problem within the system due to a number of circumstances, including HR issues such as extended leave and maternity leave, and the service was unable to function at full capacity for several years. That resulted in a reduction in the service's ability to provide one-to-one intervention and to carry out ASD assessment and diagnosis. Instead, the remaining therapists provided training and support workshops for parents. I accept there is an internal HR problem that must be addressed.

I share Deputy Butler's concerns about the overall issue. There must be investment. The reality is that services for children with disabilities, and autism in particular, have suffered in recent years. What we are attempting to do is to reinvest and build up the services. However, the services must suit the child and be available, strong and functional.

On the broader issue, I want to focus on ability and not disability. I want to reduce the stigma around autism. I want to include everybody and ensure that children and young people with autism are not discriminated against. We can all then make a difference. We need to invest in the services and that investment has started. I guarantee the Deputy that, in respect of the Estimates, we are going to be working on it over the summer, starting this morning. Autism is a very high priority on my list.