Mr. Enda Egan:

I thank the Chairman and committee for giving us the invitation to attend this morning. Our submission is broadly based on a recent survey we carried out on the closure of day services and the impact on people with intellectual disabilities and their families. Before I get into that, I wish to point out that Inclusion Ireland is the national organisation representing 66,000 people in Ireland with an intellectual disability and their families. We work on the basis of a human rights platform and we use the UN Convention on the Rights of Persons with Disabilities as the axis on which we work.

A number of key points for consideration arise from our survey. Some 54% of respondents felt they had little or no contact from their service provider during the period of the Covid-19 pandemic. Regarding the direct impact on people, mental health was the key issue that emerged from the survey, with 38% of families saying they had seen a change in the behaviour of their loved one with an intellectual disability. This behaviour could manifest itself in many ways from an anger outburst to the person retracting. Some 33% of people felt that anxiety had become a major issue for them, and they were far more anxious. Unfortunately, and sadly, 56% of people with an intellectual disability felt that loneliness had become a significant issue for them and felt loneliness was impacting on how they felt and on their general health.

On mental health, it is very important that the new Government policy, Share the Vision, is fully implemented for people with disabilities across the disability spectrum and that they have equal access to such services in their community at their doorstep. This access also involves ensuring adequate communication protocols are in place for people with sight impairment, hearing impairment and speech impairment. It is important that, as stated in Share the Vision, speech and language therapists become a core part of the teams operating at local level. That is very important from an intellectual disability point of view.

In respect of the reopening of services, as the previous speaker pointed out, families at this point are at the absolute edge of their ability to cope with what has transpired during the Covid pandemic period thus far. People are emotionally, mentally and physically at the end of their capacity to cope. I feel another pandemic is about to hit us, which is family carer burnout. That will lead to a revolving door of emergency cases. From speaking to some people, there is evidence of this happening as we speak.

Last week, the HSE issued new guidelines in respect of the reopening of services. We have concerns about some of those guidelines. The key point here is that service providers must move as quickly as possible to reopen services. They must do their absolute utmost and not use the guidelines as a stumbling block for the reopening of services.

In the survey, families indicated that some service providers had done very well and some service providers could have done better with the level of resources they have. The reopening of day services is paramount.

Another issue directly related to the Covid-19 pandemic is congregated settings. Based on figures from the beginning of this year, 1,953 people living in congregated settings are not there by choice. It is extremely important that we learn from what has happened during the Covid pandemic. Observance of the rights of people with intellectual disabilities living in congregated settings leaves a lot to be desired. They do not witness the full implementation of human rights. As the previous speaker stated, members have an opportunity to bring the Minister before this committee. There are four Ministers with a brief in the area of disability issues. All four should be brought before the committee to give their views on how they will ensure disability issues do not fall off the radar across the programme for Government. While there are good elements in the programme for Government, we need to ensure they are front-loaded.