Ms Ann Marie Flanagan:

Most of the points raised have been covered, but I want to add that for the past 20 years we have had the national disability strategy and we are supposed to have cross-departmental co-operation. That might happen at a higher level. People are burnt out from the number of committees discussing the lives of disabled people. Most of them are not disabled people and their families and that is problematic. The block funding of organisations is causing the HSE to be strapped for cash.

There was reference to the disability database last week as well, as if it were going to give us the answers to the needs of disabled people. When individuals and family members are asked if they want options that are all within the segregated institutionalisation approach, be that day services or residential care, people might think that is what their relative needs but because there are those of us who are able to articulate for ourselves that is a whole different arena even though that, too, is difficult. For people who need support to communicate and to envisage their best life offering them all forms of institutional segregated care is not offering them options. Who in Ireland has ever turned to a 23-year-old man with an intellectual disability and asked him if he would like an independent living support package or what are his dreams and ambitions? We use reductionist language by being realistic, and by smirking almost at the idea that somebody wants to get married, to have his or her own home and children. We look at risk and at minimising the choice of the person. We opt to provide disabled people with a particular type of support with the intention of looking at independent living in the future. The first option is to put them into residential care. We are now changing the language and using words such as "community". I am worried about the language that is being used around community settings. If a person is living in a situation with two, five or more people that he or she has not signed a tenancy with, that person is not in control of paying the bills, his or her supports or recruiting who helps him or her.

I recently spoke with a person who works as a support worker in a disability organisation that supports people with intellectual disabilities in community homes. Support workers are moving from house to house on a shift basis. Let us think of the psychology for the workers. They do two to three shifts per week in one home and they then move to do the same in another home. They are working with people with severe intellectual disabilities and behavioural problems who are non-verbal. Their needs as employees have to be met as well. We are not building the supports around the individual in respect of his or her will and preference and what he or she likes to do and needs. We are educating unqualified people to manage medication so that if an individual's behaviour goes beyond what is appropriate and safe for the staff, he or she can be sedated. Where are the human rights with regard to disabled people in that respect? I agree that there is plenty of international evidence that certain approaches in congregated settings lead to abuse.

Even in Ireland, in the 1990s we raised the issue of protection in legislation that restricted the rights of disabled people to have intimacy. We know this came from worried families whose relatives were being sexually abused in congregated settings. Let us protect them. I do not know how prevalent it is now but we know that young girls have been forced to control their reproductive rights in case they get pregnant if they are abused. This is the depth of the risk of abuse that is happening when we do not look at the human being and see they have feelings equal to the rest of us. This is the part that has led to the level of institutionalisation and the normalising of it.

I am not in any way referring to the wonderful experience Ms Fitzpatrick's brother and others are happening. I am speaking about the majority of people who have been institutionalised for years, whether it is disabled people or others. We dehumanise them. We separate them. We need to look at the consequences for the general population. One thing is to make sure proper services are provided for disabled people. I also want Margaret, John and Frank who have an intellectual disability to be able to go into a shop and be spoken to. I want them to be able to go to Citizens Information Centres and get information.

I work with many families. A 23-year-old son in a family might have been diagnosed with schizophrenia. He might be three years into a degree but has had to take a break. Because of societal ableism and the idea that people with mental health issue or disabilities are "less than", many family members think such people have to be cared for for the rest of their lives and will never have a quality of life whereby they can function and be supported. The starting point with a son or daughter with mental health issues is to ask what they can do to care for them. We know this manifests in control and almost doing too much for the person. I work to support families to help them understand this stigma and understand they have to stand back and support their relative to have their rights and supports separate to family members.

The other point disabled people make the whole time is, dare I say it, that care is weaponised again them. Family members who want to have their needs and rights protected often use this against disabled people to keep them within the family and cared for. When we use language such as "caring for" people straight away we think that mother, father, brother or sister must know what they are talking about. No one ever goes to that family to ask how to help all of them to have autonomy and equality to the degree it is possible for them.

I spent a few days with relatives with whom I have a very loving relationship. My 23-year-old cousin has a significant intellectual disability. He communicates differently. He does not use words. He is non-verbal. My goodness is he well able to communicate what his needs are. He has a significant intellectual disability. What was really fascinating in the beautiful relationship I have with his parents is during our conversations it never dawned on them that he should have his own personal supports. They never thought they could go on holiday together when he would have someone to help him, rather than the idea of always going into residential respite. Of course he will go for that because it is the option available but we do not look at families and see how they can be together and how a person with significant impairment, including intellectual disability, can have support in his or her own right. That person can be treated equally to his or her brothers and sisters.