Ms Nicola Hart:

I am from Down Syndrome Ireland. I thank the Chairperson and the committee for inviting me here to speak.

Every year around 150 babies join the population of people with Down's syndrome living in Ireland. Babies and children with Down's syndrome need therapies to help them reach their potential. According to our recent research, almost half of all children with Down's syndrome had no therapy at all last year. Even when they do get therapy, it is not at the intensity and dosage they need. Down's syndrome is diagnosed before or immediately after birth. Early diagnosis means there is no need to wait for babies to start showing developmental delays and there is the opportunity to provide targeted therapy from birth, with potentially life-changing results. Why is there no plan for that? Before the pandemic, in 2019, the average number of speech and language therapy sessions for a child with Down's syndrome was five - not five a week or five a month but five in a whole year. That is well below the dosage required, according to research, and it has only got worse. Two thirds of children with Down's syndrome received no speech and language therapy at all last year, according to our research, and in some community healthcare organisations, CHOs, the proportion was more than 80%.

We have been told that money is not the issue, so somebody needs to figure out what the issue is. Why are we spending money on services that are failing to meet the needs of our children? As recently as the 1980s, the average life expectancy for somebody with Down's syndrome was 25 years; it is now about 60. The HSE, by failing to provide therapy in childhood, is kicking the can down the road. That is not just impacting the lives of children with Down's syndrome right now; it is storing up social and economic costs for the future. People with Down's syndrome are often underestimated because of their communication difficulties. Without effective, individualised therapy, they can become increasingly frustrated and isolated. Failure to provide therapy has huge impacts on access to education, on social inclusion and on quality of life, and those in turn impact physical and mental health.

Therapy is not happening because the system is simply not working. Resources are spread so thinly that they are far below the level needed to be effective. Statutory assessments are being resourced from the same pot as therapy. When one has to be provided and it is considered that the other would be nice to provide, it is very easy to see what will happen. Parents get phone calls from therapists asking them to describe their children's progress in order that unmanageable waiting lists can be triaged. Most families are offered indirect therapy, such as parent training, despite there being no evidence that this effects change on speech and language skills for children with Down's syndrome. Therapists are leaving, some because the service they are asked to provide does not line up with professional ethics. We saw what happened when the HSE ignored the ethical concerns of therapists about the revised assessment of need. The State has a responsibility to provide effective therapy to support development and to prevent further disabilities under Article 25(b) of the UN Convention on the Rights of Persons with Disabilities, CRPD. That is not happening.

Focusing on speech and language therapy, we also need to consider the discriminatory nature of the system. Children with developmental speech and language disorders who do not have intellectual disabilities are offered direct therapy. There is no suggestion of moving to a less direct model for those children. However, children with a speech and language disorder associated with Down's syndrome face much longer waiting lists, which may be triaged based on a phone call. They are extremely unlikely to be offered therapy. That is State-designed discrimination. Children with Down's syndrome have the right to receive the same range, quality and standard of healthcare and programmes as provided to other people.

This is a breach of Article 25(a) of the UNCRPD.

The HSE has said that one of the issues is that there are not enough therapists to fill posts. However, most teams are not openly recruiting. The allied healthcare section on the HSE jobs website recently had only two areas recruiting senior speech and language therapists to work on disability teams. It is disingenuous to say there are no therapists out there if one is not actively looking for therapists or incentivising them to return to the workforce.

We have been told that the issues we are raising are temporary while the HSE makes the system better for everybody and that we somehow fail to understand that. We understand that our children are not getting the therapy that they need. The HSE has failed to take into account both the needs of children and families and the research evidence. As a consequence, the State has failed to meet its obligations under Article 25 of the UNCRPD. We need to stop putting the lives and futures of hundreds of children at a disadvantage by failing to provide therapy or providing advisory services that are not based on best evidence and have little or no chance of changing outcomes.

Last year was the 50th anniversary of the founding of Down Syndrome Ireland. We found some archived magazines from the early 1970s and the biggest issue then was lack of therapy. We failed children 51 years ago and we are still failing them now.

I will leave the members with a couple of quotes from parents of children with Down's syndrome. One parent of a preschool child said: "I firmly believe not one therapist could pick my son out of a line-up and even if they could they'd struggle to tell me anything about his strengths, interests and challenges”. A parent of a young teenager said:

We have and are receiving no service, and I do not expect this to change. They are just rearranging the deck chairs on the Titanic again. Nothing ever improves.

To summarise, we need the following: a real commitment to meeting the State's obligations under Article 25; a complete overhaul of the recruitment and retention processes, which are not fit for purpose; an increase in staffing to the levels recommended by professional bodies; the provision of separate, additional and ring-fenced resources for assessments of need, and a change in the law to make provision of services a statutory requirement; individualised therapy provision at dosages high enough to make an impact rather than just parent training or short blocks of therapy with long breaks in between, neither of which have been shown to be effective; therapists routinely employed in education to work as part of the school team to facilitate access to education; and an end to discrimination by increasing therapy for children with disabilities not by reducing therapy for others.