Jillian van Turnhout (Independent) | Oireachtas source

As always the Minister of State, Deputy Kathleen Lynch, is very welcome to the House. The area of intellectual disability is not one in which I confess to have specific expertise. In preparation for the debate I have done some reading and have spoken to individuals and groups. I came across a very interesting contribution by Joe Wolfe to Frontline , the Irish voice of intellectual disability on health and well-being of people with intellectual disabilities. I found much of what I read disturbing. For example, in general, people with intellectual disabilities are more likely to have poor health than their non-disabled peers and people with an intellectual disability are more likely to die from causes that could potentially be ameliorated by good quality health care. There is a multitude of factors at play in the overall health inequality which is recognised internationally and, no doubt, exists in Ireland. There is difficulty in accessing appropriate health services, difficulty in accessing inadequate or non-existent health screening. Research shows that access to timely and appropriate health checks is effective in picking up previously undetected conditions such as cancer, heart disease and dementia. There are communication difficulties and reduced health literacy and there is a lack of awareness of, and inadequate education and training in, attitudes towards intellectual disabilities among some mainstream health care professionals.

I am particularly alarmed at the outcome of the UK 2013 Confidential Inquiry into premature deaths of people with learning disabilities, following the deaths of six people with intellectual disabilities while in the care of the NHS. The CIPOLD report, which studied all known deaths of 247 people with learning disabilities in a population area of 1.7 million people in south west England, found that men with an intellectual disability died on average 13 years younger than men without an intellectual disability and women with a intellectual disability died on average, 20 years younger than those without an intellectual disability. Significantly, the study found that the most common reasons for these deaths were delays or problems with diagnosis or treatment and problems with identifying needs and non-provision of appropriate care in response to changing needs. Record keeping was also found to be more deficient for the group of people with intellectual disabilities, particularly in regard to fluid intake, nutrition, weight and seizures. Worryingly, the report concluded that 17% of those with intellectual disabilities studied were under weight compared to 2% of the general population. I fear that the situation would differ little in Ireland if the subject received the same level of scrutiny. We should act as if the findings were our own findings.

Some 8,098 people with intellectual disabilities lived in residential services in Ireland in 2012, not to mention the many people in day services and almost 20,000 living at home with parents, siblings, relatives or foster parents who require extensive support in regard to their health and well-being.

We need to be proactive rather than reactive. For example, we need to educate people with intellectual disabilities, where possible, on how to access health services and on the importance of health and well-being. We need to develop health education, health promotion and wellness programmes. We need to ensure that all people with intellectual disability receive an annual health check and health screening. We need to ensure that older people have access to regular eye sight tests. The Growing Older with an Intellectual Disability in Ireland study by McCarron et al found that people with an intellectual disability are twice as likely to have significant visual problems and at a much younger age than the general population. However, people with an intellectual disability and, in particular, those with a severe to profound level of intellectual disability, are far less likely to have their eye sight tested.

We need to create an up to date hospital passport that can help health care professionals understand the communication and health care needs of people going into hospital or accessing other health care services. These should be updated every six months. There is a need to increase the focus on nutrition and healthy diet, as the UK study has shown.

The Minister of State raised the issue of congregated settings. I agree that too many adults with intellectual disabilities remain accommodated in large institutional congregated settings. The Time to Move on from Congregated Settings report, published in 2011, gave a seven-year timeframe for the closure of these settings.I am concerned about the current rate of transition of persons from congregated settings. I was told the figure was 100 a year but the Minister of State has told us it is 150, which I welcome. By my calculations, it will not take seven years but rather it will be 2050 before the last person moves. People with disabilities have a right not to be forced to live in unsuitable accommodation and they need to have a greater choice of where they live and with whom.

I would like to address the issue of children with intellectual disabilities. In their case, the services most commonly availed of are speech and language therapy, occupational therapy and psychology. In September 2014, Inclusion Ireland published The Case of Speech and Language Therapy, which noted the lack of functioning national therapy services and how access to therapy depends on where a child lives in Ireland. We have seen more of that recently. The provision of 200 therapist posts in the past two budgets was very welcome but thousands of children with intellectual disabilities are waiting years for access to therapy services, which impedes their full development.

Last Thursday, 21 May, the Laois Offaly Families for Autism published a report, The Current State of HSE Autism Services in Laois Offaly, which highlighted poorly planned, disjointed and limited provision of therapy services in the area. This group protested outside the offices of the disability services in Tullamore to voice its concerns over the quality of services being provided to children with autism. The report it produced is based on direct experiences of families in the area and details the full extend of the neglect of children by disability services. I would recommend that the Minister of State reads it. I would love to believe the problems only exist in the Laois-Offaly area, but I have heard, anecdotally, the same from around the country. I urge the Minister of State to examine the report. We could do more. I welcome our focused debate on this issue.