Annie Hoey (Labour) | Oireachtas source

I thank the Minister of State for providing a copy of her statement. It is great to hear her positive outlook for this programme. I am hopeful there will be a positive future with high-quality, timely, much-needed services for the sector.

I was distressed to hear the recent contribution from Senator Seery Kearney regarding the discussion at the Oireachtas disability committee when it was recounted that neurotypical persons were advised to mask symptoms of autism when in public. I thank the Senator for sharing that story in this House this week and last week.It is important that we know what is really happening in the lives of people with disabilities. If we in this House cannot share the direct experience of disability the least we can do is amplify the voices of those who do and share their stories. I commend Senator Seery Kearney for doing so. I hope that in the House we can bring much-needed attention to persons living with visible and hidden disabilities.

I also want to raise specific points from an organisation that represents those who will be affected by this national programme. Down Syndrome Ireland will have listened intently to what the Minister of State said in her opening statement and to what she will say in answer to some of the questions people have. Down Syndrome Ireland has highlighted to me the concerns and experiences of its members with regard to accessing care. Progressing disability services for children and young people is a national programme, the objectives of which are to address inequity in therapeutic and multidisciplinary services, to have a national unified approach, to have a clear referral pathway and to have integrated care. All of these are incredibly important. As other people have highlighted, they have been sorely lacking until now in many areas. Down Syndrome Ireland told me this is an admirable goal but, as we know, the reality is very different. Families are reporting a complete breakdown in services with many receiving no therapy, sometimes for years at a time. A survey by Down Syndrome Ireland of families prior to the pandemic showed that almost half of families with a child with Down's syndrome were offered no therapy in the previous year. Those offered therapy averaged just five sessions, which is well below the level needed for best practice.

There are concerns about the communication on changes in the reconfiguration of services, with only 13% of families in the survey happy with the level of communication on reconfiguration. A total of 95% of those who responded to the survey were either unsure about how their service would be affected or believed they would receive a poorer service, with only 5% anticipating an improvement. This is not to be a Debbie Downer. It is really worrying that the Minister of State is here today speaking about what I believe will be a very positive change but service users are very concerned about it. They feel the progress and opportunities are not clear with regard to how it will work. I wanted to give the Minister of State this figure because I believe it is important.

Down Syndrome Ireland also states that whatever way services are configured and communicated there is no denying there are just not enough therapy posts to allow meaningful levels of therapy for every child who needs it. Families spoke to Down Syndrome Ireland about their frustration with inconsistencies in the service, staff turnover, short blocks of therapy with very long breaks in between and therapists being absent, on long-term leave or redeployed. These factors, along with some concerns about communication, could be potential major stumbling blocks to accessing therapy for their children. I wanted to share these concerns from this particular organisation. I am sure these concerns might be echoed in a number of organisations.

In recent years, the most quoted line from the founding document of the Republic, the Proclamation, has been that on "cherishing all the children of the nation equally". It has become the mantra of many a campaign and movement in Ireland and it is as relevant today as it was in 1916. In part, this is because the same sense of fairness that informed the writers of the document still inform Irish sensibilities today. Rather tragically, the same reality is true today as it was back then, which is that we are not all cherished, assisted and supported equally in Ireland. We need only look at the rates of unemployment and attendance rates at further and higher education of people living with disabilities, and the indignity visited on some who have to calculate what opportunities they can pursue against the risk of how many State supports they would lose if they did so, to see things are still very unfair and unequal.

To go back to the matter at hand, the programme is about service delivery. As stated, the programme seeks to ensure that services should be based on a child's needs rather than diagnosis and the services available where they live. These are incredibly laudable and important aims. I am a member of the Oireachtas Joint Committee on Health and a reproductive rights activist. We hear time and again from those seeking mental health, reproductive health and disability services that the two greatest barriers are diagnosis and geography. Diagnosis is particularly important because people are spending, as has been highlighted, inordinate amounts of money going privately. We know what therapies will help them. We know what the children need. We just need to get it to them.

I hope that progressing disability services for children and young people marks a turning point in access to services geographically and financially. We have all heard the stories from friends, family, local people and colleagues about the battles that have to be fought to get services. This is incredibly laudable and worthwhile and I wish the Minister of State the very best in getting the reconfiguration to where it needs to be. We need to be realistic with regard to the amount of work that needs to be done. I have highlighted the experiences of Down Syndrome Ireland. It is not alone. The jump from what is to what I hope will be is enormous. I wish the Minister of State well with the task. Many questions have already been asked, including on burnout, employment numbers and section 39 organisations. People are exiting the sector at rapid rates. How will the Minister of State marry this with what is an ambitious aim? I wish her the very best with the reconfiguration.