Stories/Lived Experiences
Symposium
Author: James Cawley, Policy Officer, Independent Living Movement Ireland (ILMI)
First of all, a big thank you to the “ALL Blog” for asking me back to contribute for the International Day of Persons with Disabilities. It has been an extremely busy year, (all online), with working from home and receiving endless updates on the Covid-19 pandemic. December 3rd is the UN International Day of Persons with Disabilities, and I sit here with straw and a mug of tea in hand, writing this blog one year since it started!
I’m a very proud Irish disabled man who is a son, brother, husband, friend and co – worker. I also work as a Policy Officer for Independent Living Movement Ireland (ILMI).
We are a campaigning, ‘national cross-impairment disabled person’s organisation’ or ‘DPO’ as defined under the United Nations Convention on the Rights of Persons with Disabilities (CRPD).
We are led by, and for, disabled people and we promote the philosophy of independent living and seek to build an inclusive society. Central to our work is our mission to ensure that policy decisions that impact the lives of disabled people are directly influenced by those whose lives are correspondingly affected.
Our philosophy can be summed up as: ‘Nothing About Us Without Us!’ and ‘Rights Not Charity’ – simply asking for disabled people to be consulted and engaged with as per Articles and Sections 4.3 and 29B of the CRPD; recognising us as contributing members of society.
For me, Independent Living is when all the pieces of the “Independent Living Jigsaw” fit together. Some of those pieces include Housing, Transport, Employment and Personal Assistance Services (PAS).
Article 19 of the CRPD (Independent Living) recognises that disabled people have the right to live in, be part of, and use services and amenities in their communities. They should choose where and with whom they live with and have all the supports they need to live well. Independent Living is about having the freedom to have the same choices that everyone else has in housing, transportation, education and employment. Independent Living is about choosing what aspects of social, economic, and political life people want to participate in. Independent Living does not necessarily mean living on your own. It is about having choice and control over your life, to have a family, to get a job, to participate socially and to realise your goals and dreams. Independent Living is about linking the ‘independent living jigsaw’ pieces together and quite often for many disabled people, it can best be achieved by the employment of Independent Living supports such as Personal Assistants or supports that are appropriate and adequate for us as disabled people to live a life of our choosing.
In the context of this blog in “Fighting for Rights in the Post – COVID Era”, I will focus my discussion point on the ever so topical issue of housing. ILMI has been working to create ways to build disabled people’s capacity to take up spaces on decision-making structures such as their Housing Disability Steering Groups (HDSGs). These projects include ‘Making Inclusion a Reality’ and the ‘ILMI Housing Network’.
On Wednesday 1st December 2021, ILMI launched a report called ‘Making Inclusion a Reality’.
ILMI successfully applied with South Dublin County Council (SDCC) through IHREC’s equality and human rights grant scheme in 2020. Based on two core pieces of work: bringing disabled people together as a network in SDCC to develop a collective analysis on how to feed into SDCC HDSG. Separately, to work with the existing SDCC HDSG to use a values-led approach to shape participation of disabled representatives based on the Public Sector Duty. Values Labs were contracted to carry out both pieces of work and ‘Making Inclusion a Reality’ launched in January 2020. The project developed a “Model of Participation” for the HDSG. Read more about Making Inclusion a Reality.
ILMI and Inclusion Ireland as National organisations came together on the issue of housing for disabled people.“Our Housing Rights – Tackling the Housing Crisis Disabled People Face”, is a joint campaign between ILMI and Inclusion Ireland which we launched in September of this year.
The first stage has been the development of a report, based on the experiences and concerns of disabled people and their families who took part in six focus groups carried out in July 2021. The report has formed the basis of a fresh campaign to see vital changes in the new Housing Strategy for Disabled People, which is currently being developed by the Housing Agency and is due for publication soon (early/mid December 2021).
To put this into context, let’s remember that Ireland ratified the CRPD in 2018 and Article 19 of this convention states that disabled people have the right to live in, be part of, and use services and amenities in their communities. Disabled people should be able to choose where and with whom they live with appropriate and adequate supports.
The “Our Housing Rights” report highlights the impossible application process that disabled people face, explaining that it can be different in every county, it is not transparent and is so complicated and repetitive that it often confuses people. It also requires the disabled person to apply separately to both the local authority for housing and the HSE for a support package and there is no clear pathway to apply for supports and very little engagement between the local authority and the HSE.
Many disabled people feel that they are being left reliant on family members for accommodation and support, with high numbers now ageing in the family home with ageing parents. Many simply give up or don’t apply, giving a hugely under-estimated picture of the real level of need.
The report examines 3 key areas of accessible housing, affordable housing and independent living supports.
The issues raised in the focus groups in relation to these areas included the importance of Universal Design in the planning and design stage of building homes and the importance of the location of a house and assistive technologies to enable independence. It also identified the difficulties in relation to the application process, large waiting lists and housing grants that are not fit for purpose.
Broader issues were identified around poverty, the cost of disability, inadequate or inaccessible housing schemes such as Housing Assistant Payment (HAP) and the Housing Adaptation Grant, the unavailability of social housing, the lack of choice and control disabled people have over their supports such as a lack of access to personalised budgets, personal assistance, home supports and a general lack of understanding of what supports are required for disabled people to live independent lives. Disabled people make up 13.5% of the population but represent 27% of the homeless population. Just over 4,000 disabled people continue to live in inappropriate institutional settings with many younger people under the age of 65 in nursing homes.
‘Our Housing Rights – Tackling the Housing Crisis Disabled People Face’ is available on both organisations’ websites. Visit www.ilmi.ie or www.inclusionireland.ie.
THANK YOU!
Happy International Day of Persons with Disabilities – Nothing About Us Without Us!
For further information contact ILMI Policy Officer James Cawley on: jamescawley@ilmi.ie or Julie Helen Inclusion Ireland’s Communications and Information Manager on: julie@inclusionireland.ie