Patricia Stephenson (Social Democrats)

I am here to speak about respite and care delivery. Respite is a crucial aspect of disability service provision and offers those with disabilities, elderly people and those who care for them critical and much-needed support. The role of respite service delivery within the disability policy has been labelled as a key priority for the Government and the HSE and improvements in this area in the latest programme for Government have included an action plan for disability services.However, like many other areas in our health service, respite delivery is experiencing severe strain and increased pressure. The respite investment plan announced by the former Minister of State, Anne Rabbitte last year, stated that a 40% increase in provision would be needed for known unmet need according to the disability capacity review.

Transparency is needed around HSE respite data too. In January the HSE could not provide explicit data on the average number of overnight respite beds. It noted that data on respite beds is not routinely compiled by disability services. We need to compile this data. It is simply not good enough to say it is not available. That same month, the HSE stated there was no centrally maintained waiting list for respite services regarding individuals whose respite has been refused. How can this be? How can we know the real need if we are not recording the actual requests that are being made?

While the disability support application management tool is welcome progress, greater transparency on the patient data and available respite resources must be ensured. The absence of a formal policy on respite is also unseemly. It is clear that many of the shortages in respite service delivery could possibly be mitigated against policy oversight. Skills, Opportunities, Success Kilkenny, known as SOS Kilkenny, is one example of a respite provider to adults with intellectual disabilities and autism across Kilkenny city and county. It is a fantastic organisation. This week marks its 50th anniversary and demonstrates its role as a cornerstone in the disability sector in Kilkenny. Its services include offering community-based day locations and a part-time short-break service to individuals. This gives people the opportunity to experience increased independence and build lifelong skills.

SOS Kilkenny provides respite care in one home but it is fully booked for this year and the only other respite it can provide is on an emergency basis. The respite it provides enables families to continue their care role while ensuring service users receive appropriate and dignified care. It is really unfair that families rely on respite. They face long waiting lists, reduced availability and the increased stress on their household that comes with that. Many care givers are completely exhausted and risk burnout. We have spoken many times to caregivers, particularly during the election campaign, many of whom are elderly themselves. They talk about how increasingly difficult it is to manage their care responsibilities. They have been calling out for more respite as a way to transition their loved ones from the family home to independent living.

SOS Kilkenny, in particular, needs a second home to be able to provide a more comprehensive respite service. Could the Minister of State give an update on funding for Sycamore House, a dedicated respite facility in Kilkenny? I am aware that SOS Kilkenny had been promised an extra €1.5 million in funding. Can the Minister of State speak on that? Today is its 50th anniversary so it would be nice to have confirmation that funding is on the way.

In this context, will the Minister of State update the House on the plans to improve respite services for adults with disabilities, older people and children’s disability services? Can he commit to better data collection so that we know the scale of need in respite? Without knowing those numbers, I doubt we will ever get to the stage where we are properly resourcing the services.