by James Cawley
James Cawley is Policy Officer at Independent Living Movement Ireland, and Chairperson of the European Anti-Poverty Network (EAPN). As a proud disabled man, James is a leader of his own Personal Assistance Service (PAS) which enables him to live an independent life of choice, dignity and respect.
Introduction: Independent Living Movement Ireland
Independent Living Movement Ireland (ILMI) is a campaigning, national cross-impairment Disabled Persons Organisation or DPO as defined under the United Nations Convention on the Rights of People with Disabilities (UNCRPD). Where disabled people are referred to in this essay this should be understood to include all disabled people, including those with learning difficulties, people experiencing emotional distress and physical and sensory impairments.
ILMI is led by, and for, disabled people. We promote the philosophy of independent living and seek to build an inclusive society. Central to the way we work is to ensure that policy decisions that impact on the lives of disabled people must be directly influenced by them. The voices of disabled people cannot be left unheard in such important decisions.
Our philosophy can be summed up as: ‘Nothing about us without us’ and ‘Rights Not Charity’. We are simply asking for disabled people to be consulted and engaged with as per articles 4.3 and 29 B of the UNCRPD. Ireland ratified the UNCRPD in 2018 and these specific articles place an obligation on the state to engage and consult directly with disabled people specifically through their DPOs. However, disabled people have not always been involved in discussions about their lives – for example when applying for supports for housing. Quite often many non-disabled people sit around a table “assessing” the needs of the disabled person.
We need to involve disabled people, in all conversations going forward and at all levels: local, regional, national, European, and international. ILMI has a vision for an Ireland where disabled persons have freedom, choice, and control over all aspects of their lives and where we can fully participate in an inclusive society as equals. Article 19 of the UNCRPD (Independent Living) recognises that Disabled people have the right to live in, be part of, and use services and amenities in their communities. This article of the UNCRPD outlines that disabled people should be able to choose where and with whom they live, having appropriate and adequate supports.
Independent Living is about having the freedom to have the same options as the rest of society in housing, transportation, education, employment, having a family, participating socially, and realising goals and dreams. Independent living is not about living on your own or doing things on your own. It is about choosing what aspects of social, economic and political life people want to participate in. It’s about linking the independent living jigsaw pieces together, including assistive technology and other appropriate supports. Quite often for many disabled people, it can best be achieved by the employment of Personal Assistants to provide supports where needed. For other disabled people it might be the use of assistive technology or support in making a decision – everyone’s needs are different.
Traditionally in Ireland we medicalise “disability” which individualises the person’s impairment. However, Independent Living Movement Ireland (ILMI) views disability from the social model of disability. ILMI believes it is the inaccessible policies, structures, housing and transport systems for example that “disable” us.
Disability and Housing: Context
Ireland is currently in the midst of a housing crisis. However, housing has always been a crisis for disabled people. The lack of accessible housing for disabled people, in addition to our absence in discussions on housing and homelessness and the pervasive nature of the medical/charity model of disability leads to the institutionalisation of disabled people.
In April 2016, 643,131 people – 13.5 per cent of the population – declared themselves as having a disability. Disabled people are more than twice as likely to report discrimination relating to housing and over 1.6 times more likely to live in poor conditions, including living in damp housing, in homes without central heating, or in neighbourhoods with social problems. Disabled people are also particularly over-represented in the homeless population: more than a quarter of homeless people are disabled. There are also disabled people among the “hidden homeless” – people who live in other people’s homes and are not on any housing list or where there is no expectation that they should live independent lives. Thousands of disabled people in residential and congregated settings and nursing homes are denied a right to their own home, and lack of delivery of policy in terms of housing means that their needs are not being met. Last year’s publication (May, 2021) of “Wasted lives” highlighted the inappropriate placing of disabled people in settings where they simply “exist” and are not given the choice, dignity and respect to make their own choices.
This situation exists despite more than a decade of policy in Ireland dedicated to the issue of disability and housing. The national housing strategy for people with a disability (2011 to 2016 and rolled over to 2020) was developed against a backdrop of a number of policies including the Disability Act (2005), the Housing (Miscellaneous Provisions) Act (2009), “A Time to Move On from Congregated Settings” (HSE 2011). This strategy has come to an end now and has been replaced with the National Housing strategy for disabled people 2022 to 2027. In addition, Ireland ratified the UN Convention on the Rights to Persons with Disabilities (UNCRPD) in 2018 which recognises the equal right of all disabled people to live in the community, with choices equal to others.
Focus Groups: Nothing about us without us
In July 2021, ILMI and Inclusion Ireland held six focus groups on housing, specifically looking at the experiences of disabled people trying to gain access to housing and the supports to live in a home of their own, both at an individual level and a systemic level. The consultations were cross impairment; the focus groups were mainly attended by disabled people with two of the groups specifically for family members of disabled people. Several themes emerged including accessible housing, affordable housing and independent living supports. However, there is significant overlap between these themes.
Accessible and affordable housing
Accessible housing is a complex issue and is intrinsically linked with affordability. Accessible housing is much more than having a house that is wheelchair friendly. It should be livable, no matter what disability a person has, with the entire house fully accessible. It is about building genuine inclusive communities where housing is linked to amenities, to the local bus stop or being able to access local shops or the post office. As one participant of the focus groups put it:
“The demographic of disability is so diverse and needs to be factored into builds. People have very individual and diverse needs.”
It is essential for community living that disabled people have easy access to local services, this includes accessibility to wide safe footpaths. Many disabled people do not drive, and public transport is not always accessible, so a home needs to be centrally located for services or located close to appropriate public transport options. For rural dwellers, the accessibility of the community and services is an even greater difficulty considering the longer distance between different services, and the dominance of the private car in rural areas. In many locations the lack of any form of footpath and dangerous roads can make independent travel impossible.
Accessibility, unfortunately, can also come with a high cost. For disabled people, affordable housing does not exist as an option. Employment rates for disabled people are well below the rate for the general population and consequently poverty rates are much higher. This leaves disabled people at a disadvantage in purchasing or renting a home of their own. Participants stated they often had to rely on family for assistance with deposits and rent. The lack of social housing, which is a fundamental issue in the wider housing crisis in Ireland, means that this avenue is also not available for disabled people.
“Rent needs to go down for us to afford it. I will have to leave my current home as I can barely afford the rent. There is very little money left for shopping or other bills.”
The construction of the house is only one aspect of accessible housing. Many disabled people may need assistance from the Local Authority to obtain housing but the system of applying for a house and the associated supports required to live independently is inaccessible to many. Firstly, the “Cost of Disability in Ireland” research report showed that disabled people incur extra costs of between €9,000 and €12,000 a year. This cost is not taken into account when assessing an applicant. Disabled people earning above a certain threshold may not be eligible even though they would need the assistance to live independent lives.
A disabled person applying for housing with their Local Authority must also seek independent living supports to live separately. They are not linked. Yet, there is no clear pathway to apply for supports, and very little engagement between the Local Authority and the HSE on the provision of a house alongside the required supports. Theme Two of the new National Housing strategy, 2022 – 2027 mentions “interagency collaboration and the provision of supports” but many people spoke of a ‘Catch 22’ situation where you cannot get the house without a support package and in many cases that support package is almost impossible to obtain. Hopefully, the full implementation of Theme Two can eradicate this barrier. A simple solution would be to have a fully accessible central application process where a person can apply for a house and independent living supports. In essence, disabled people need cross departmental communication.
“It is impossible to plan. There is no provision and no clear pathway to move along.”
“The Local Authority tell us that we cannot access housing as we need significant support to live independently. The HSE tell us that we cannot get an accessible house as we need to be on the Local Authority list. We have been left in no-man’s land.”
For those able to get on the housing list there are further barriers. Although most private rental accommodations are not accessible to most disabled people, many are forced to avail of the HAP scheme due to the excessively long waiting lists for accessible social housing. There is no onus on landlords to make housing accessible as the Part M building regulations are weak and outdated.
For disabled people who do not require housing but whose current home is not accessible, there is a Department of Housing grant available to adapt the property to enable the disabled people to continue living at home. Again, participants noted that the means test applied to this grant excludes many people and, the amount of the grant often does not cover the cost of home adaptation leading to people living in unsuitable homes.
Accessibility is not only about being able to physically move around a house, smart technology and assistive technology are housing supports but are not factored into housing as an accessibility requirement. For example, accessible cooking equipment is not a feature in new homes, but such aids are essential for people with a visual impairment. For other people, voice activated home appliances and smart devices are essential independent living supports. Accessible housing needs to cater for disabled people beyond those with mobility issues. Everyone deserves a safe and liveable home.
Participants in the focus groups suggested that between 7 to 10 percent of all new housing stock, including social and affordable homes, should be constructed within the principles of universal design, so the house can be accessed and used to the greatest extent possible by all people regardless of their age, size or impairment. To create genuinely inclusive communities, social and affordable housing, which includes a proportion which is accessible, should be constructed in centrally located areas or areas with good, accessible public transport for ease of access to the local community.
Government departments should engage with disabled people through their representative organisations (DPOs not disability service providers) to gain their expert knowledge of the issues affecting their lives.
Independent living supports
At present there are few options for disabled people to acquire the necessary supports to live independently. This is having a significant impact on disabled people and their families. Disabled people are aging in the family home with their aging parents. There is a denial of a right to live independently, coupled with an onus on families to provide care when they are aging. Ireland has not legalised a right to a personal assistance service, despite ratification of the UNCRPD. This service gives disabled people choice and control over their lives and would reduce dependence on family and friends.
“If the Government are serious about creating accessible houses they have to be fit for purpose and tailored to the needs and requirements (of the person).”
Independent living needs more than accessible and affordable housing. Participants of the focus groups highlighted that ‘the system’ often does not see disabled people as rights holders and that they are often spoken down to. The ability to live outside the family home and with peers is also an integral part.
“I want to live near my friends, for a social life and interaction. Flexibility to do what I want and to have people come to my house.”
Securing the supports for independent living is a massive issue in the housing crisis for disabled people at present. Focus group participants spoke about not knowing how to apply for supports to live independently or who to apply to and of the different avenues they pursued. There is no formal application process for support like the application for the physical house and there is no consistency from one HSE area to another. People do not get feedback where they are on a list. An example of this is when disabled people apply for a Personal Assistance Service (PAS). There is no standardised approach. In 2019 ILMI started their PAS NOW campaign which has five ‘asks’ stating that a PAS needs to be defined, invested in, legislated for, standardised, and promoted.
“No continuity of service of supports or who we engage with in terms of accessing supports or housing.”
“People with intellectual disability are excluded from social housing because they cannot get funding for supported living.”
The introduction of a model of personal budgets may be a way forward for people to secure supports to live independently. However, barriers remain for disabled people obtaining personal budgets. Notably, some of the large service providers, both private and public, are reluctant to ‘unbundle’ funding to individuals. Participants noted that the unbundling of funds was an issue for people moving from congregated settings and as a result very few have moved into a home of their own.
“We need personalised budgets. Adequate funding is needed to ensure we can live independently. The reality is that most large-scale service providers don’t want to part with their funding.”
A statutory personal assistance service (PAS) could be legislated for, as a first step towards remedying this situation. With the laws in place, it would be easier to ensure it is adequately funded as per the projections in the Disability Capacity Review to 2032. Such measures would make a dramatic difference in the lives of disabled people.
Focus group participants pointed to a limited understanding of the types of support disabled people require to live independent lives. For example, one person with a visual impairment noted that he required no personal supports but needed access to assistive technology such as voice activated appliances. Other supports that people said they required included training on managing a household budget, transport to their day service or job, help with shopping, specific supports such as for autism, and help with home maintenance. The supports needed for independent living are as varied as the people who require them. Flexibility within the system to recognise, and accommodate, is necessary if people are able to live independently.
Some of the solutions to the housing crisis for disabled people mirror the solutions for the housing crisis in general, like building more social and affordable housing. However, some issues require solutions tailored towards the specific needs of disabled people.
Housing is not just about building homes. We need to recognise and reinforce in all policy development and implementation, locally and nationally, how independent living requires more than just building. For disabled people to live independent lives we need to consider how accessible the built environment is around homes. Accessible transport, which allows disabled to get to and from their homes, support services such as the Personal Assistance Service, accessible education and employment for disabled people – all these concerns must be addressed.
 “About ILMI,” Independent Living Movement Ireland, https://ilmi.ie/
 Independent Living Movement Ireland recognises that language is a powerful and evocative tool. The language and terminology we use and used in this paper has been carefully chosen to reflect the values of equality and empowerment which are at the core of ILMI. The term ‘disabled people’ is used throughout all our written submissions and key policy documents in accordance with the UPIAS classification of disability and impairment which has been developed by disabled people themselves (UPIAS 1976). For more see https://ilmi.ie/our-vision-mission-and-values/
 “What is Independent Living?,” Independent Living Movement Ireland, https://ilmi.ie/what-is-independent-living/
 “Independent Living Movement Ireland submission to the Oireachtas Committee on Housing, Planning and Local Government,” Independent Living Movement Ireland, June 2019, https://ilmi.ie/ilmi-submissions/
 “Personal Assistance Services Campaign,” Independent Living Movement Ireland, https://ilmi.ie/key-policy-documents/
 Ireland’s unfortunate history with institutionalisation as a policy response is also highlighted in a ““Family Hubs”: Lives on Hold”, available at https://www.jcfj.ie/article/family-hubs-lives-on-hold/
 “Census of Population 2016 – Profile 9 Health, Disability and Carers,” Central Statistics Office, last updated 02 November 2017, https://www.cso.ie/en/releasesandpublications/ep/p-cp9hdc/p8hdc/
 Respondents within this study were identified as disabled when they reported that they were strongly limited or limited their daily activities over at least the last six months because of a health problem. These include physical and psychological disabilities. This overrepresentation of disabled people within the homeless figures should be treated with caution as the harsh conditions of homelessness can cause deterioration of health conditions leading to physical and psychological disability as well as disability being a factor in a person becoming homeless. Grotti, R., Russell, H., Fahey, É. and Maître, B., Discrimination and Inequality in Housing in Ireland, Economic and Social Research Institute, 2018. https://www.ihrec.ie/discrimination-and-inequality-in-housing-in-ireland-set-out-in-new-research/
 “Wasted Lives:Time for a better future for younger people in Nursing Homes,” The Office of the Ombudsman, May 2021, https://www.ombudsman.ie/publications/reports/wasted-lives/
 “DISABILITY ACT (2005),” electronic Irish Statute Book (eISB): Government of Ireland, http://www.irishstatutebook.ie/eli/2005/act/14/enacted/en/html
 “HOUSING (MISCELLANEOUS PROVISIONS) ACT (2009),” electronic Irish Statute Book (eISB): Government of Ireland, http://www.irishstatutebook.ie/eli/2009/act/22/enacted/en/html
 “Time to Move on from Congregated Settings A Strategy for Community Inclusion,” Health Service Executive, June 2011, https://www.hse.ie/eng/services/list/4/disability/congregatedsettings/time-to-move-on-from-congregated-settings-%E2%80%93-a-strategy-for-community-inclusion.pdf
 “National Housing Strategy for Disabled People 2022 – 2027,” Department of Housing, Local Government and Heritage, January 2022, https://www.gov.ie/en/publication/60d76-national-housing-strategy-for-disabled-people-2022-2027/#:~:text=The%20National%20Housing%20Strategy%20for,Department%20of%20Health
 “Convention on the Rights of Persons with Disabilities – Articles,” United Nations Department of Economic and Social Affairs Disability, https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/convention-on-the-rights-of-persons-with-disabilities-2.html
This section summarises the report documenting the findings of the focus groups. The full report can be found here: Our Housing Rights: Tackling the Housing Crisis Disabled People Face, Independent Living Movement Ireland, 2021, https://inclusionireland.ie/wp-content/uploads/2021/09/Report.-Our-Housing-Rights-2021.pdf
 This type of community development can also be a more environmentally and socially sustainable model. A previous Working Notes essay argues the link between housing developments which are adaptable to all life stages, generating mixed and inclusive communities, and low carbon communities. For more details, see: Adams, K. et al, “Do We Really Feel Fine? Towards an Irish Green New Deal”, Working Notes 34, no 87 (October 2020), https://www.jcfj.ie/article/towards-an-irish-green-new-deal/
 “Survey on Income and Living Conditions (SILC) 2019”, Central Statistics Office, October 2020, https://www.cso.ie/en/releasesandpublications/ep/p-silc/surveyonincomeandlivingconditionssilc2019/
 “The Cost of Disability in Ireland: Final Report” Department of Social Protection (prepared by Indecon International Research Economists), November 2021, https://www.gov.ie/en/publication/1d84e-the-cost-of-disability-in-ireland-research-report/
 Such costs include additional heating requirements, small home adaptations, assistive technology for the home, maintenance, etc.
 Technical Guidance Document M – Access and Use (2010), Department of Housing, Local Government and Heritage https://assets.gov.ie/100486/12a529ae-7fda-49ab-bc3b-0521fe5be50b.pdf
 “Building for Everyone: A Universal Design Approach,” Centre for Excellence in Universal Design (CEUD), National Disability Authority, http://universaldesign.ie/Built-Environment/Building-for-Everyone/
 This would be in line with the Towns Centers First approach which was noted in the Programme for Government available at: https://www.gov.ie/en/publication/7e05d-programme-for-government-our-shared-future/
 Article 19, ‘Living independently and being included in the community’, specifies that disabled people should have access supports including personal assistance to facilitate inclusion in the community.
 You can find out more about the campaign at www.ilmi.ie