Inclusion Ireland and Down Syndrome Ireland research reveals worrying findings
Inclusion Ireland has published a research report on the parent experience of Progressing Disability Services for Children and young people.
Lack of services was the main issue that emerged from the research which saw responses from over 1000 families across Ireland.
The report reflects a survey published by Down Syndrome Ireland recently which shows that 65% of respondents received zero Speech and Language therapy sessions last year. Speech and language therapy is vital for young children with Down syndrome. This survey took place in the context of many services moving to the ‘Progressing Disabilities’ model, which is intended to streamline pathways and improve access to services, however, there is little public confidence that the intended outcome will be achieved.
"We have real concerns about the effectiveness of the Progressing Disabilities policy in meeting the needs of children with Down syndrome and the current lack of access to appropriate levels of therapy," says Down Syndrome Ireland. "There is nowhere in the country where children are getting ready access to all of the therapies they need to support them to reach their potential. Almost half of children aged 0-18 had no therapy of any kind in the last year.
While the situation varies between one CHO area and another, there is nowhere where the system is functioning well for children with Down syndrome and their families."
The evidence presented in the report highlights that while this is a longstanding issue, the situation has been worsened by the pandemic.
In response, Down Syndrome Ireland have:
- highlighted the survey findings to the Joint Oireachtas Committee on Disability Matters; You can read the full presentation here;
- contacted the Minister for Disabilities and political leaders seeking urgent meetings;
- contacted the HSE CHO Disability Managers seeking urgent meetings;
- been working to highlight the issue in the media; and
- liaised with other disability organisations.
For children with Down syndrome, missing out on the early and consistent benefits of necessary therapies has lifelong negative consequences but it also has consequences for our health service in terms of increased need for health and social care services across the lifespan.
Ireland cannot continue to fail to deliver vital health therapies in violation of the UNCRPD. A short-term solution is needed while longer-term policy and implementation issues are being worked out, particularly in light of the delays caused by the pandemic.
Down Syndrome Ireland CEO Barry Sheridan featured in an interview with the Journal.ie on March 11th where he called on the urgent implementation of interim measures to address the lack of services being provided to children with disabilities following the stark servey findings.