Report by the Joint Oireachtas Committee on Disability Matters
Down Syndrome Ireland welcomes the publication of the recent report by the Joint Oireachtas Committee on Disability Matters. The report focuses on the current crisis in Disability Services, and makes clear and practical recommendations for change.
This is a comprehensive report. Running to 132 pages it covers issues from therapy provision in early childhood to planning for appropriate services as people reach old age. It unflinchingly paints the picture of a system in crisis, suggesting that Government needs to recognise the extent of the crisis and act accordingly.
DSI has engaged with the committee on a number of occasions in recent years, highlighting the failure of the HSE to provide early intervention and therapy, the need for the rights-based approach to education outlined in the EPSEN Act (2004), and the need for individualised provision in adulthood. Some of these discussions are reflected in the recent report, with the committee recognising the contributions of Down Syndrome Ireland, along with families, carers, professionals and other disability organisations, in highlighting some of the issues, and describing both the failure to uphold rights and the impact on people with disabilities and their families.
The report is available to all to read. We hope that the action of the cross-party committee in recognising and naming the crisis will bring us one step closer to solutions. However, while the report and its recommendations are positive, we await the actions which are needed to create real change and uphold the rights of people with disabilities at all stages of their lives.
We also call for interim solutions to address immediate needs. Babies and children with Down syndrome cannot wait for service delivery to improve over time. Valuable weeks, months and years of opportunities for intervention are them passing by.
We are calling for ring-fencing of a portion of the National Treatment Purchase Fund to enable families to source therapies where none are available from the HSE (as recommended in p100 of the report)
We are calling for urgent action to be taken regarding adult services, including personalised supports, respite care, and transport as recommended in p76-77 of the report.
We are calling for a change to the Disability Act (2005), to align with the UNCRPD, particularly Article 25(b), which requires that the state: ‘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’ (as recommended in p101 of the report). This would require that the HSE provide not just Assessment of Need, but also the services identified to meet those needs.
We are calling for a rights-based approach to inclusive education, and for better co-ordination between health and education (as recommended in p100 & 102 of the report). It is shameful that key aspects of the EPSEN Act (2004) are yet to be commenced, almost 20 years later. We welcome the current review of the Act, and acknowledge that education theory and practice has evolved in the last 20 years, but there are rights to assessment, individualised educational plans and co-operation between education and health which could be implemented while the review is in progress.