DFI's Opening Statement to the Joint Oireachtas Committee on Disability Matters on awareness raising of the lived experience of congregated settings

Opening Statement of Dr Emer Begley, DFI's Director of Advocacy and Inclusion, to the Joint Oireachtas Committee on Disability Matterson Awareness raising lived experience of congregated settings.

Thursday 9 February 2023

The Disability Federation of Ireland is a federation of over 100 member organisations. Many thanks to the Committee for the invitation to present on the social policy report which we and Citizens Information Board(CIB) jointly published last December: ‘The Right Home: The Housing Needs of People with Disabilities’. The report is based on evidence from people with disabilities, their families, DFI’s community team, DFI’s membership and other disability organisations, the National Advocacy Service (who are also here presenting today) and Citizens Information Services. This report revisits similar research carried out jointly by DFI and CIB in 2007.

I would like to frame this presentation within Article 19 of the UN CRPD, which commits signatories to “recognize the equal right of all persons with disabilities to live in the community, with choices equal to others”, and to ensure that “persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement”.

Our joint policy report shows that we are not delivering this fundamental right to independent living in Ireland. Some examples of the difficulties disabled people face in finding the right home include:

•Over one in four of the homeless population (27%) have a disability

•Some disabled people report being on the social housing waiting list for 10 years or more. The waiting time for people with disabilities has increased in recent years, while it has decreased for the general social housing waiting list.

•More than 1,300 people with disabilities under the age of 65 are inappropriately placed in nursing homes.

•Decongregation, originally due to be completed by 2018, is still far from complete, as Inclusion Ireland have outlined.

•The maximum funding available through the Housing Adaptation Grant has not been revised in more than 10 years, despite substantially increased building costs.

The Committee may wish to refer inparticular to Chapter Five of the report, which documents the lived experience, analysing 15 case studies outlining the human impact of the lack of equal housing options for disabled people.

In particular the system is failing disabled people currently living in inappropriate congregated settings and nursing homes. DFI has worked for over a decade to highlight the issue of disabled people under 65 being inappropriately ‘placed’ in nursing homes, due to a lack of alternative options and insufficient provision of supports to enable independent living.This work originally sprang from our experiences at a community level, however on further investigation it became apparent that this was a national issue. Our report in collaboration with DCU ‘The situation of younger people living in nursing homes’, published in 2018, explored this practice.

It has been positive to see this issue being increasingly highlighted -the Ombudsman’s 2021 ‘Wasted Lives’ report,and the recent budgetary allocation to address this was widely welcomed.The slow level of progress in moving people out of nursing homes and into the community is concerning, as is the fact that disabled people are still moving into nursing homes. The HSE is working to collect full data on the numbers of disabled people under 65 living in nursing homes, and this work needs to be completed as soon as possible. DFI member organisation Acquired Brain Injury Ireland who are also presenting today continue to do very important work in this area, including outlining many solutions to address the inappropriate placement of people in nursing homes.

It is almost twelveyears since the publication of the ‘Time to Move On from Congregated Settings’ Report in 2011 and yet decongregation is still far from complete. This is tragic given the transformative impact that moving out o fcongregated settings can have for disabled people, as many DFI members and the people they work to support can attest.

Our policy report also highlights the similar, systemic difficulties experienced by disabled people who do not currently live in congregated settings–such as those living with family who want to live independently, and those forced to live in inaccessible housing due to lack of options.

Disabled people spend longer time on the social housing waiting list than those without a disability - the disability waiting list is reducing at half the rate of the general housing waiting list. In 2020, for example ,the number of disabled people on the housing list declined by half as much (5%) as those without disabilities (10%). If this is not proactively addressed, there is a high risk tha tsome of these individuals could end up inappropriately living in congregated settings such as nursing homes in the future.

To make progress on these ongoing problems, and deliver on the right of all disabled people to live independently in a place of their choosing, our policy report makes a number of recommendations, including crucially that improved integrated working acrosspolicy areas and Departmental briefs should be prioritised –in particular housing, health and social care supports.

The publication of the National Housing Strategy for Disabled People 2022-2027 in January 2022 was a welcome developmentin this regard. However, we are still waiting for the implementation plan, which was initially due for publication in Junelast year. It is concerning that more than a year into the new strategy we do not yet have the crucially important implementation structures and monitoring mechanisms fully in place, at both local and national levels.

Adequate funding, effective collaboration, and robust management, oversight and reporting must form integral components of implementation. In particular sufficient funding must be provided for all areas of disability housing policy - for the decongregation process, for moving people out of nursing homes, but also to deliver sufficientfully accessible housing and support provision for those disabled people who are currently living in the community and/or wish to live independently.

The Right Home report stresses the need for a 'whole of government approach' on housing and disability. There is a need for leadership, resourcing, support and direction at national level. This Committee could help to drive this change–for example it could collaborate with the Committees on Housing and Health to hold a joint hearing to consider disability housing in the round.

Other areas that must be prioritised include mainstreaming disability in all housing policy, including future proofing the new housing stock that is currently being built under Housing for All by building to Universal Design++ standards. Health and social care supports, and HSE budget lines and allocations, should also be coordinated with budgetary allocation for housing building and offers. Another issue that must be addressed is the extra Cost of Disability where it intersects with housing issues – for example housing adaptation requirements. The Housing Adaptation Grants need to be improved, as highlighted by DFI in our submission to the Department of Housing, Heritage and Local Government last year for their review of the grant scheme. Changes needed include an increase in overall funding, increasing the maximum grant amount and raising the income threshold to factor in the Cost of Disability. Addressing these areas will enable more people to live independently in their communities.

The right to independent living is one of the central rights in the UN CRPD. To deliver on this right, there is a need for coordinated housing and social care supports. This requires cross-Departmental working at a national level, and collaboration at a local level between the HSE, Local Authorities, voluntary organisations and other stakeholders. The new Housing Strategy is an opportunity to make progress in this fundamental area and to ensure no-one in Ireland ends up living in a congregated setting due to lack of alternatives, but it requires strong implementation and monitoring processes, and resources to deliver on its aims. 

ENDS