Thursday, 29 April 2021
National Autism Empowerment Strategy: Motion [Private Members]
I thank the Labour Party for bringing forward this most important motion on autism strategy and services. I fully support its recommendations and I am pleased to hear the Minister of State say she is supportive. All of us know from speaking with parents and carers the intolerable burdens that have been placed on families and caregivers over the last 14 months. On top of that, waiting lists have increased for many services during that time. As politicians, we all receive heart-rending emails and phone calls but perhaps one of the most difficult is when a parent is advocating for their child. They see the life chances of their child diminishing in front of their eyes and see their children moving backwards because they cannot access speech and language therapy, physiotherapy, occupational therapy or other services the child so badly needs. That is the most difficult phone call. One parent told me they spend a great deal of time and energy on assessment and when that is finished, there are no or very few services.
I have four emails here and I expect the Minister of State has many. These are from different parents and I received them in the last week. Each one tells a unique but similar story. I will quote part of one of the emails because, as we both know, the voice of the parent is stronger and more powerful than anything I could say. I have changed names to preserve anonymity:
My son Michael has Down's syndrome and autism. He has a fabulous personality, is full of life and mischief and brings joy to his siblings and to us, his parents. The biggest barrier we face in raising our child with autism is his lack of access to speech therapy. Michael is non-verbal and this can cause frustration for everyone and directly impacts his ability to learn and become a functioning, included member of society. For the past five years, myself and a group of parents in Sligo have been fighting for an appropriate level of therapy to be provided for all our children. We have been met with barriers and excuses from the HSE at every turn.
The next sentence is shocking but she wrote it:
The disdain and disrespect that has been shown by some ["some" is underlined] of the managers in the HSE is nothing short of disgraceful. It feels like we are looked down upon and should be thankful for anything we get.
I spoke to her and she emphasised that it is just some. Many will do everything they can but they do not have the resources. I can only imagine how difficult it must be to work under those circumstances. How can one provide a decent, humane, accessible service if one does not have the resources? She says: "I could count on one hand the individual speech therapy sessions my son has had in the last five years." In another sentence from another parent, she sums it up perfectly: "Some of the issues I have found in being a parent of a child with autism is the lack of quality continuous service."
There are positives in these emails. They speak highly of their local school and how, in many ways, the school has been the glue that held everything together. On foot of these and other queries, I put down questions to the Minister for Health regarding the numbers of children in Sligo and Leitrim currently awaiting assessment, treatment or therapy. I learned that 385 children are awaiting initial assessment, 84 are awaiting therapy and 444 are awaiting further speech and language therapy. Sligo and Leitrim are small counties and they are shocking numbers.
To be fair, the response from the HSE said some measures were being undertaken to reduce those lists and that is positive but the lists are so long that these extra measures will hardly keep pace with the demand, never mind cut the waiting lists. Part of the problem seems to be the difference between positions or posts allocated to Sligo-Leitrim and positions filled. Going back to speech and language therapists, 40% of the positions are unfilled. There are similar situations pertaining to social work, physiotherapy and occupational therapy. It is not as stark, but somewhere between 10% and 25% vacancy. These vacancy rates must be dealt with as a matter of urgency. It is soul-destroying for those who need to access the service and it places intolerable burdens on those who are trying to provide the service.
Before I came in, I got three phone calls because people knew I was going to speak about autism.
One particular comment from a mother stayed with me. She has a 14-year-old son and she spoke of her 14-year struggle. I will not go through what she said, but she was most reasonable. She is worn down and worn out, especially due to the lack of speech and language therapy. She told me she has listened to promises from HSE managers and politicians. She politely says she does not want to hear their voices; she wants to hear her son's voice. That says it all.
I know the Minister of State is working hard to improve an extremely difficult situation. Before I finish I want to emphasise to her once again the unacceptably long waiting lists for CAMHS. Families, teachers and carers are driven demented looking at children regressing. They fear for their safety and, in cases, their lives, yet they cannot access CAMHS. I am told of a 15-month waiting list. People have been told that the only way to access services is to go to the emergency department in the local hospital. The Minister of State and I know that is plain wrong. I urge her to give her very best consideration to the extra resources and staff needed to provide a decent CAMHS service, and I think she will.