I thank committee members for inviting us to address them today. We are a parent group of children with Down's syndrome based in Carlow. For the past three years, our children have not received the therapeutic services, namely, speech and language therapy, occupational therapy and physiotherapy, that are essential to help them reach their full potential and improve their quality of life. The HSE has forgotten about them.
Each year in Ireland, one in 500 children is born with Down's syndrome. Early diagnosis means parents do not have to wait for their children to start showing developmental delays. We have the opportunity to provide targeted therapy from birth. Research has suggested that early intervention for infants and toddlers with Down's syndrome is critical in achieving developmental milestones. Intensive early intervention may even be related to enhanced brain development. Indeed, newborn infants with Down's syndrome resemble all infants in their initial learning and memory abilities. However, without early intervention, they will often fall significantly behind in what they can achieve. Early intervention can help children with Down's syndrome to achieve greater independence, improve their communication skills and improve their motor skills. Early intervention can also help to prevent or delay the onset of some of the health problems associated with Down's syndrome.
As a group, we surveyed our local families in June 2022. The results showed that more than 30% of our children had not received speech therapy in over three years. Of the 52% of members' children who had received speech therapy in the past five years, three quarters had only one or two visits with a therapist. A research team in University College Cork, UCC, has recommended speech therapy on a weekly basis for all children with Down's syndrome, with some children needing more than this. The average number of sessions reported does not in any way approximate the intervention intensity specified in evidence-based interventions. Limited service for all ages has detrimental implications for people with Down's syndrome and our negligible adult service is in breach of human rights. Targeted, strategic investment is needed to allow practice to be aligned with best evidence, support and treat people with Down's syndrome effectively and allow them to reach their maximum potential and exercise their right to communicate.
If speech and language intervention is not provided for people with Down's syndrome, this can result in an accumulation of difficulties that can become chronic and lead to reduced potential, poor social skills, behavioural problems, emotional difficulties, literacy disadvantage and mental illness. Furthermore, the impact on education, where there is no early intervention, is catastrophic for our children. Article 24(1) of the CRPD states: "States Parties recognize the right of persons with disabilities to education." States parties should operate with "a view to realizing this right without discrimination and on the basis of equal opportunity". Our children are not entering education on a level playing field due to the lack of services.
If speech and language intervention is not provided for people with Down's syndrome, itncan result in an accumulation of difficulties that can become chronic and lead to reduced potential, poor social skills, behavioural problems, emotional difficulties, literacy disadvantage and mental illness. Furthermore, the impact of a lack of early intervention on our childreneducation with no early intervention for our children is catastrophic. Article 24(1)/4 of the UNCRPD says the States Parties recognize the right of persons with disabilities to education. With a view to realizing this right without discrimination and on the basis of equal opportunity. Our children are not entering education on a level playing field due to this lack of services.
Article 25(b) of the CRPD stipulates that states parties shall: "Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons." This is not happening. Our children have been totally forgotten.
I want to tell the committee members about Joey, who is 14 years old and has Down's syndrome, autism, arthritis, a moderate intellectual delay and is non-verbal. Joey was a cardiac baby and was operated on at ten weeks old. He came home at 17 weeks and remained on oxygen until he was ten months old. He did two years in mainstream primary school and now happily attends St. Laserian's Special School in Carlow. Joey communicates through sign, gestures and visuals. He can say "Uh, oh" when something is wrong, "Yes", "No", "chips" and "Daddy". At 13 and a half years old, he learned how to say "Mammy".
He only uses it when his mam walks into the room. He never uses it to gain attention or ask for help. With proper and consistent access to speech therapy over the years, could there have been a different outcome for Joey? His family continue to work on a "total communication system" for him without the guidance of a speech therapist.
Joey is not fully toilet trained and the progress that has been made has taken years and a great deal of effort. If occupational therapy intervention had been better, would this outcome have been better? His family continue to work on this without the help of an occupational therapist. Joey cannot dress himself, as he has not developed the proper skills to complete this task. Would this have been different with proper occupational therapy intervention over the years? He can undress, but struggles to do so. He cannot do buttons, zips or laces. He cannot put on his socks or shoes. Joey will not walk up the stairs unless he is instructed and assisted to do so. He will only descend the stairs on his bum. Would this have been a different outcome with regular physiotherapy intervention? He cannot pedal his bike. He cannot climb the steps of a slide in the playground.
Joey is one of many. Our children are not getting the services they need to move forward in life. As parents, we must fight for our children and the services they should receive. The lack of access to services also has a major impact on families. We are not trained therapists.
A letter sent from the children's disability network team, CDNT, manager this month confirmed that there were 23 clinical positions in Carlow, of which only nine had been filled. The HSE needs a complete overhaul of recruitment and retention of staff. A recent article in the Irish Examiner reads: "The HSE has paid €15.5m to private recruitment firms since 2020 but does not know how many staff have been hired as a result." Why is the HSE not recruiting the staff required to support our children? Why is the onboarding of staff taking so long? Why is statutory leave - maternity and parental - not considered in succession planning?
Ireland has three undergraduate SLT courses, with approximately 90 places available. How many of these graduates are taking roles in the public sector? How many are returning to further education? Have we considered expanding the number of places over the coming years to plan for the future of CDNT?
We stand before the committee today as a parent group of children with Down's syndrome, but our "You Forgot About Me" campaign is fighting for all children who are not getting the services they need. The HSE has forgotten about them. It should not have to be this difficult. We need action now. Our children have been forgotten and future children will continue to be forgotten about until this right to services becomes law.
