I thank the Chairperson and members of the joint committee for the invitation to contribute today. I want to dedicate this contribution to Jennifer Hynes who, as some of you will know, is a stalwart, amazing self-advocate who has found herself in a nursing home since 2019, and to the Clare Leader Forum, a pan disabled people's organisation, DPO, which believes in the right to live a life with dignity, privacy, equality, respect and autonomy, driven by the mottos, "rights not charity" and "nothing about us without us".
Article 19 of the UNCRPD, coupled with the commitment of the Oireachtas, are central to realising our human rights. For so many in society a place to call home is one of the most pertinent issues of our times, but it is impacting disabled people, women, men and children of all ages and impairments, disproportionately. This is a welcome opportunity to contribute to a narrative of human rights of disabled people with regards to a home, independent living and community participation. We need a paradigm shift in realising disabled people as rights holders. Prevailing attitudes and practices interfere with disabled people being recognised as needing their own homes to live, participate and work in our communities as per our will and preference equal to others.
Disability injustice and ableism are among the key drivers for continued investment in practises that sustain the deprivation of liberty, inequity in accessing justice and the lack of supports for independent living. Homelessness is hidden by policies of institutionalisation in residential centres, nursing homes, hostels and relatives' homes. Disabled people often have no choice but to live with relatives owing to the lack of independent living supports and housing. My contribution to the discourse on the right to independent living is to evoke an urgency to act swiftly, intentionally and empathically to redress these inequalities and to meaningfully include us - disabled people - in the solutions.
Personal assistant services, PAS, and a home are fundamental human rights, as per Article 19. The exclusion of a significant portion of the population from statistics and policy responses to homelessness, housing needs, unemployment, etc., further normalises the othering and segregation of disabled people. For example, clumping PAS hours with home help and home care, without a right of the disabled person to a minimum number of hours to support him or her, has similar consequences. Disabled people become institutionalised in their own home, consequently. Disabled people include people with long-term physical, mental, intellectual and sensory impairments which in interaction with various barriers hinder full and effective participation in society equal to others. Disabled men, women and children have a need for a home that is equal to that of non-disabled people. Disabled people are not vulnerable by virtue of impairment, but as a consequence of the medical model, oppressive and, at times, harmful systems. There are overwhelming systemic policies and services that segregate, maintain inequality and fuel ableism as a normative and acceptable response to disabled people. These need to change. They limit the meaning of a home, community participation, private and family life.
The majority of society understands disability through a non-disabled lens, which reduces the rights of disabled people. Disabled people are disproportionately impacted by deprivation, including homelessness. Systemic ableism assigns value to appearance, ability to reproduce, earn, and ascribed behaviours, evaluating a prescribed inability to conform to a constructed idea of normality, intelligence and productivity.
The terms "homelessness" and "a home" when describing disabled people's living situations are not generally ascribed. It is assumed that disabled people either remain in their family homes with ageing relatives or live in institutions in the form of residential care, nursing homes or hostels. It is normalised to such a degree that many family members also believe that institutions are where disabled relatives need to live for their own safety.
The report, Wasted Lives: Time for a better future for younger people in nursing homes, made for difficult reading. I thank Mr. Peter Tyndall for giving a voice to the 1,300 young people who are in nursing homes for older people through no fault of their own other than having an impairment that requires independent living supports and a lack of recognition of their right to autonomy, privacy and dignity in their own homes. It was harrowing to read about how there was for too many a lack of informed consent and a belief that it would only be for a short while, turning days and weeks into years. To learn that four people have died since the publication, 20 more people have entered nursing homes and only 18 people are due to be supported in leaving is devastating for me, the Clare Leader Forum and the movement.
There remain 3,000 people living in congregated settings, which means ten or more other people living in one space. Fundamentally, it means that they have no tenancies, no control and no decision over who is recruited to provide them with assistance. Most people do not decide to be segregated from their communities and families. The evidence shows that they are at greater risk of having a poor quality of life compared to people living in the community. They continue to live in unsuitable, outdated accommodation. Important aspects of everyday life are unavailable in most cases, for example, private homes, access to their own kitchens where they get to cook with assistance or access to laundry facilities.
We have no statistics on the number of people who are forced to live with elderly parents or relatives due to the lack of vital supports that provide independent living opportunities. It is assumed that adults with disabilities choose to live at home for life, but many do not. It keeps people in poverty traps, forcing disabled people to resort to relatives becoming "carers" and themselves becoming passive dependants, oppressed and depressed.
We must re-examine the €2 billion spent on specialised services through the lens of disabled people's human rights. We need to question the assumptions that residential care, years in day services with little to no progression, residential respite services, the lack of transport and being segregated from community life for all their lives are what disabled people want and need. We need to move beyond traditional service-led models that perpetuate paternalism and believe that disabled people are less entitled to independent living, a home and a family life.
The consequences of systemic and cultural ableism exclude disabled people from mainstream news reports, political debates and conversations about housing and homelessness. For example, when we hear about homelessness, it does not conjure up images of disabled parents, disabled children or disabled rough sleepers. The data show us that one in four homeless people on the social housing waiting lists are disabled.
I wish to share with the committee some examples of disabled people's lives, the first of which is that of a mother with MS whose leg is so heavy that she cannot lift it anymore and whose arms are weak, making it difficult to use her crutches. She has four children between aged between three years and 12. She in living in emergency accommodation. Her children attend school three miles away. Their living situation is unbearable. Her pain and fatigue make it more difficult and her stress is exacerbating her impairment. Her need for a home is urgent. Her key worker talks about finding a homeless hub, but that is not a home, and it certainly will not meet her physical support needs.
Another example is that of the parents of three children, one of whom has a physical disability, who are looking for emergency accommodation. The landlord sold their home. The father had to reduce his hours and the mother had to give up her job. Can the committee members imagine their poverty? Their child's access needs and the lack of accessible housing, or housing at all, keeps them in emergency accommodation.
Another example is that of the disabled mother in a domestic violence situation, scared for her children and herself. She cannot leave because she does not have personal assistance hours. Her abuser is the person assisting them. Shelters cannot accommodate her access needs or her hoist and do not have the resources to provide personal assistance. There is no end in sight for her.
What about the university graduate who qualified with a masters? She was offered a permanent job but had to refuse it because her personal assistance hours and her supports from the Department of Education were taken away while she was a student. She moved down home to live with her sister and is sharing a room with her young niece. As a result, she lives in abject poverty and is forced to live on disability allowance. She has sunk into depression. Just to get out of the house, she goes to a day centre.
Another example is that of the 39-year-old woman who had to leave her home. She had a physical impairment and a local authority house. She went to hospital, but it did not have enough personal assistant support hours for her. In April 2019, she agreed to go into a nursing home temporarily. She is still waiting there. Like the other 1,300, she spent the past year and a half locked in a room because of Covid-19. Now that she is finally out of the room, she patiently repeats the same conversations day in and day out with many of the other residents, who are at the end of their lives with advanced dementia. Her life is ebbing away. She is becoming institutionalised and does not believe that she will ever get out.
Another example is that of the 27-year-old woman who arrived at a homeless clinic mid-pandemic in rural Ireland just a few months ago with her bags in her hands and looking for emergency accommodation. She was known to them, but she was refused that support and was told to go home to her father. She could not. She tried to explain why and was emotional. As a consequence, her mental health deteriorated. She ended up being admitted involuntarily by the Garda. This devastated her and she became hopeless. Due to the condition of her mental health, which was a consequence of being rejected and not listened to, she was eventually given temporary accommodation. However, it is temporary and she remains fearful, which is impacting her mental health recovery.
Another example is that of the 30-year-old woman with an intellectual disability who excitedly moved into what she thought was community living only to find herself living with two other people with whom she had not chosen to live. She was promised independent living, choice and control in her life, but because that organisation only has funding for one staff member every day, she finds herself walking along the streets and going to events in groups. That is a form of institutionalisation. She did not want that and did not know it was what she was accepting. Due to her having an intellectual disability, she is not allowed to do things independently. She is depressed and is not being listened to. Where are her will and preference?
Disabled people need to be recognised as having social, economic and cultural rights with the necessary infrastructure and supports. Disabled people need to be heard. People who are categorised as having complex needs, those with intellectual disabilities, people with significant mental health issues and people with high physical and sensory support needs deserve to be supported to live their chosen lives, not equal to other disabled people, but to other human beings. As we have stated time and again at this meeting, Article 19 of the convention states that, equal to others, disabled people have the right to live with whom we want and where we want and to have the supports that meet our unique needs. This article does not select people depending on our impairment or perceived capacity. It means everybody.
It has long been accepted in Ireland and internationally, and is now covered by Article 19, that personal assistant support services offer disabled people independent living, yet after 30 years, it accounts for less than 5% of the €2 billion budget. This matter needs to be examined. Personal assistant support services are only offered to people with physical and sensory impairments whose functional needs require support. People who need support in making decisions continue to be victims - that is the word we use - of wardship under the Lunacy Regulation (Ireland) Act 1871.
It must be repealed urgently. We ask the members of the committee to work with their colleagues in the Oireachtas to commence the Assisted Decision-Making (Capacity) Act 2015 fully and on time, as promised. These outdated laws and policies feed an ideology that holds that people with significant impairments are subhuman and a drain on finite resources. These policies and practises maintain structural and systemic institutionalisation of disabled people.
It is not all about resources. To make sustainable, meaningful change, the State must support true and meaningful involvement by all those directly impacted. There are many ways to do this. People with a disability who are critical thinkers and solution-focused could be sought out. Capacity could be enhanced for other disabled people, as is necessary. People with different impairments and cultural backgrounds could be included. Disabled people should be viewed as having the same value as expensive external consultants. We are the experts. We have the solutions. We can support the State to support us. I hope fundamental human rights will be the driver for continuing work in this area and that there will be sustained dialogue with and meaningful inclusion of disabled people at all levels in respect of policy, law reform, finance and system change.