WHEN DISABLED PEOPLE talk about independent living, it is not about living on your own.
Independent living means being in control over all aspects of our lives. It means choosing where and who you live with but also having the choice to decide how to live your life and being included in your community.
For disabled people to be fully included in society it means a shift towards policies that invest in inclusion in terms of transport, employment, politics, health and education.
At the core of independent living will be two linked issues: the provision of accessible housing and the supports many of us will need to live the lives of our choosing, such as personal assistance services (PAS).
Ireland is currently in the midst of a housing crisis. However, for disabled people housing has always been a crisis for us.
This is due to the lack of accessible housing for disabled people, the lack of visibility of disabled people in discussions on housing and homelessness and the pervasive nature of the medical/charity model of disability which still leads to the institutionalisation of disabled people.
Housing for most disabled people in Ireland is severely limited due to our accommodation needs.
Disabled people are more than twice as likely to report discrimination relating to housing and are over 1.6 times more likely to live in poor conditions, such as living in damp housing, lacking central heating or living in an area with neighbourhood problems.
Disabled People are also particularly over-represented in the homeless population: more than one in four homeless people are disabled.
There are concerns about the disabled people who are the “hidden homeless” where disabled people live in other people’s homes and are not on any housing list and or where there is no expectation that they should live independent lives.
There are also thousands of disabled people in residential and congregated settings who are denied a right to their own home.
Linked with designing and building accessible homes is the need to invest in supports that many of us as disabled people need to live inside and outside our homes, such as personal assistance services (PAS).
PAS is a service that allows us to live independently. It provides us with the freedom and flexibility we need to live our lives as we choose. A personal assistant (PA) is hired to assist us with a range of day-to-day tasks that we cannot physically do for ourselves.
With PAS we are in control and direct our PA to carry out tasks both inside and outside of the home, including personal care, domestic duties, assisting in day-to-day tasks such as shopping, support in the workplace or socialising.
A PA does not “look after” or “care for” us. We delegate these tasks to our PAs and in doing so take back control of our lives.
A distinct benefit of PAS is that it reduces our dependence on our family and friends. The confidential relationship that develops between our PAs and us allows us to maintain a private life and our dignity.
The personal assistance service is often the difference between existing and living for many of us.
Supports like PAS not only give us choice and control over our lives, but they are the most cost-effective way of ensuring disabled people can participate in society: to be part of our communities, to access education, training, employment, and to participate in social activities and live the lives of our choosing.
The lack of accessible housing that meets disabled people’s needs or prioritising investing in PAS is due to the fact that disabled people have not until relatively recently, been at the table deciding what the policies about our lives should be or what we want to see prioritised.
This reality is reflective of the fact that for far too long disabled people were not supported to create their own organisations of disabled people.
The emergence of Disabled Persons Organisations (DPOs) in Ireland is changing that and we believe that as we become organised and our collective voices are resourced and recognised, we can move towards policies that actually are about our lives.
Ireland ratified the United Nations Convention on the Rights of People with Disabilities (UNCRPD) in 2018. A key provision of this Convention is that it places the role of Disabled Persons Organisations at the centre, in terms of policy development, implementation and monitoring.
For example, the emergence of DPOs has had a positive impact in the development of the National Housing Strategy for Disabled People 2022 – 2027, which has clearly defined the role of DPOs locally and nationally in driving the implementation of this strategy.
After over a decade of cutbacks and under-investment, we are beginning to see year-on-year increased spending on PAS, which is driven by disabled people becoming organised to demand change.
But there are still huge challenges.
Ministers O’Gorman and Rabbitte very recently launched the Action Plan for Disability Services 2024 – 2026, with the announcement that €2.9 billion of State funding would be allocated to disability services in Ireland.
But how much of this huge sum of money will actually be invested in realising the rights of disabled people?
For example, there is still a huge emphasis in investing in systems like residential places, day centres and respite services: systems that by their very nature will never be about giving disabled people choice and control over their own lives.
Why do we as a country continue to ‘throw good money after bad’?
It goes back to who is sitting around the table and setting the agenda for what disabled people actually want and need.
Due to the historic lack of investment in the development of collective autonomous DPOs, policy discussions in relation to disability in Ireland have either happened through disability service providers speaking on our behalf, or individual disabled activists seeking change for themselves – neither of these approaches provide lasting results in real inclusion for disabled people in Ireland.
That can no longer be the case. Disability service providers have no mandate to speak about us, or our lives, without us.
With the emergence of DPOs, including members of the DPO Network, we are now in a position to clearly define how we want to engage with the State and move from being ignored or part of tokenistic consultations, towards active participants co-creating systems and structures to build genuine inclusion for us in Ireland.
Jacqui Browne is the chair of the DPO Network which is an alliance of five national Disabled Persons Organisations in Ireland working together to advance the full implementation of the UNCRPD in Ireland.
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How difficult is it for disabled people to secure a home in Ireland?
The Noteworthy investigative team want to dig deeper into the housing crisis facing disabled people and meet with disabled people living in inappropriate accommodation.
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