Professor Mary McCarron:

Thank you very much, Chairman. All of these are critical and important questions. I will address the first question in respect of elderly parents looking after ageing family members with dementia. This is a common problem and it is likely to be an increasingly common problem. If we are serious about continuing to support people with intellectual disability to live at home and in the community, we need to develop robust services, including respite to support family members.

The Daughters of Charity model is currently supporting a family member who is living at home with her elderly father, who is in his 90s. She has advanced dementia but she is able to come to the specialist service which has been developed for regular respite. This has enabled the family to continue to care for her at home because of this outreach support. It is not always about bringing people into services. Services also need to move out. We need appropriate services to support people.

A question was asked about diagnostics. I will combine my comments with Senator Crown's question on diagnosis. It is a number of years since we began to understand the risk of dementia in people with intellectual disability. Now, assessment tools and diagnostics have substantially and critically improved. Unfortunately, many generic professionals undertook little diagnostics training as part of their undergraduate qualifications, whether medical or nursing degrees or training in other areas. Many people working in the generic area in the specialist memory clinics simply do not have the toolkit or the expertise to diagnose. Good expertise has built up in some specialist intellectual disability services now but these are only in pockets. There is considerable inequity throughout the country and whether people can get a diagnosis depends on where they are living. Elderly people have travelled from Cork to Dublin to see me and establish whether I could assess the family member. That should not be happening today. We should be building up services of excellence in the various regions.

Reference was made to the issue of employment. This has come up in several formats. The big issue for people with intellectual disability is that only 7% of this population are in paid employment. Many of these people have never been employed. Many among this population have few assets to support them in their old age. This is a critical issue.

We absolutely need to consider robust supports and serious efforts. This must include the mainstreaming of this population into real jobs and paid employment. We need to consider what type of education and additional support will be required to equip them for employment, including third level education. There are some examples of these initiatives under way. This is a serious concern. Naturally, education is central to preparing people with intellectual disability for the workplace.

The question of which body is best placed to support osteoporosis assessment was raised. We need cross-working between intellectual disability specialist services and generic health care professionals. Many people with intellectual disability find it challenging to walk into a busy clinic and understand the procedures, for example, for something like a dual energy X-ray absorptiometry, DEXA, scan. These diagnostic tests can be very cumbersome and frightening for those among this population. If we are serious about having screening and testing, we need to look at how we can organise these generic health care clinics. Perhaps we could have a slot at a given time of the day when it is not so busy in order that people with intellectual disability can be afforded the time they require to get used to unfamiliar environments. They can be daunting for this population.

There was a question on the issue of people not having used social media and limited use of mobile telephones, etc. There is ample evidence of this and we are seeing in our study the critical nature of social media and technology for improving social connectedness and quality of life. The data are clear. Loneliness is a big issue. Moving people with intellectual disability into the community without the skills, expertise and supports to retain contact is a matter of concern. We need to build up robust structures in the community and in the education and training sectors to support the use of this technology, on which the rest of us in society are so highly dependent. We know it substantially improves our connectedness and quality of life. This is a critical issue.

I have commented on the changing demographic in Ireland. People with intellectual disability are living longer. There is an issue here. There are people in congregated settings currently. We are now trying to move them out into the community and into more independent living accommodation. The majority of these are in the older age cohort. They tend to have more health problems. Given the slow pace of moving people with less severe intellectual disability, those who are younger and those with fewer health problems in the community, we have some work to do to help transition the many others who continue to live in these settings into the community. Not only that, but much remains to be done to sustain them within the community, because being in the community does not equate in any way to living in the community. They are two very different things. Changing geographical location does not necessarily equate with a change in quality of life. We need robust structures in place to address and support that aspect.

There was a question from Senator Burke on the numbers living at home. We know that approximately 67% of the total intellectual disability population registered on the international intellectual disability database continue to live at home. We know that approximately 15% live in congregated settings, 17% live in residential settings and approximately 15% live in community group homes. The majority of people with intellectual disability continue to live at home. As we said earlier, we are tracking those who are living at home. Many are being cared for by sibling carers. We need to consider whether we are serious about not reintroducing congregated settings. Another model of congregated setting comes under the guise of the nursing home model. We need to be very careful and understand the types of robust structures that we are going to have to put in place to support family members. To answer Senator Burke's question, approximately 67% of the total intellectual disability population continue to live at home. We know from the last report of the database that there are over 2,000 people looking to move out of home. Families are actively looking for alternative accommodation for them. That is an important issue.