Joint Committee on Disability Matters debate -
Wednesday, 6 Dec 2023

Planning for Inclusive Communities: Discussion

An Cathaoirleach

Apologies have been received from Deputies Seán Canney and Frank Feighan and Senator O’Loughlin. The purpose of today’s meeting is to discuss planning for inclusive communities. On behalf of the committee, from Independent Living Movement Ireland, ILMI, I welcome Fiona Weldon, capacity officer, and Claire Kenny, policy assistant. From St. Joseph’s Foundation, I welcome Michael Hegarty, chief executive officer, David Doyle, development manager, and Niamh O’Shea, children's disability network manager and occupational therapy manager. From Brothers of Charity Services Ireland, I welcome Ms Una Nagle, interim chief executive, and Eamon Loughrey, director of services for the west region. They are all very welcome.

I remind witnesses of the long-standing parliamentary practice that they should not comment on or make charges against a person or entity outside of the Houses in such a way as to make him or her identifiable or otherwise engage in speech that might be regarded as damaging the good name of a person or entity. Therefore, if their statements are potentially defamatory in relation to identifying a person or entity and they are asked to discontinue their remarks, it is imperative they do so.

Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside of the Houses or an official either by name or in such a way as to make him or her identifiable. I remind members of the constitutional requirement that members must be physically present within the confines of the Leinster House complex to participate in public meetings. Anybody participating via Microsoft Teams should let us know they are on the grounds of the Leinster House complex.

Without further ado, I call Ms Weldon to make her opening statement.

Ms Fiona Weldon

Independent Living Movement Ireland is a national cross-impairment disabled persons organisation, or DPO for short. Our vision is an Ireland where disabled people have the same rights as everybody else does. We believe strongly in inclusive societies where everyone can achieve more.

We recently launched our new ambitious strategic plan, which is led by our strategic values of human rights, collective empowerment and social justice. These core values reflect the philosophy of independent living as defined by the disabled people's movement and our ambitions for genuine inclusion where everyone lives to their full potential. They underpin our activities in pursuit of our mission.

Human Rights are very important to ILMI, as well as collective empowerment and social justice. Social justice is about making rights real for people and achieving a more equal distribution of resources. It involves dismantling structural ableism and embedding the social model of disability in policy thinking, policy-making, and policy implementation.

In our opening statement we want to focus on how disabled people are supported to organise in our own collective spaces so that we can be given the time to analyse how our communities should be and how the State needs to resource and support our collective spaces, which are DPOs

Planning for inclusive communities must from the outset be led and guided by the UNCRPD. Before even beginning to think about how we plan for these, or how we might design or build homes, we must embed the concept that disabled people, through their DPOs, are actively involved in the co-creation of strategic policies and practices that impact our lives. The realisation of disabled people's rights under the UNCRPD in resourcing inclusive communities must be grounded on the principle that as disabled people, we are the experts in our own lives. In realising the UNCRPD we need to move away from passively being asked to participate in consultations when policy has already been decided, and move towards resourcing disabled people to work together to drive the development of policy, practice and systems that will lead to our active involvement in our communities as equals.

Due to the historic lack of investment in community development approaches with disabled people to develop collective autonomous spaces in DPOs, policy discussions in relation to disability in Ireland have either happened through disability service providers speaking on our behalf or through individual disabled activists seeking change for themselves. Neither of these provides long-lasting results in making inclusive communities real. However, with the emergence of ILMI and other DPOs the process has thankfully begun to change and we welcome the chance to inform the committee’s thinking on the need for investing and resourcing the sustainability of local DPOs to inform local planning for inclusive communities.

The role of DPOs in realising inclusive communities is crucial. From the ILMI's perspective, planning for inclusive communities can only be effectively done when we as disabled people are actively involved in designing what our local communities should look like so we are able to participate as equals. Two fundamental changes are needed to achieve this. It is about shifting the thinking as to how the State engages with us. We need to move from consultation to co-creation. We also need to move from engaging with disabled people individually to structured engagement with us collectively through DPOs.

DPOs are disabled people's organisations and are very unlike disability services providers. They are led by and for disabled people. DPOs work on a cross-impairment basis with disabled young people and adults. DPOs are about bringing disabled people together to bring about a more inclusive, equal society through community development approaches. DPOs are social inclusion and collective spaces for disabled people, informed through an equality, human rights and social model of disability lens. DPOs must be the voice of disabled people. Disabled people working together in DPOs is a relatively new phenomenon in Ireland. DPOs are not just social spaces where disabled people meet online or, thankfully now, in person. They are spaces where we as disabled people are empowered collectively to critically analyse the social exclusion and oppression we face through a social equality and human rights framework.

An Cathaoirleach

I thank Ms Weldon very much. I now call on Mr. Hegarty of St. Joseph's Foundation to make his opening statement.

Mr. Michael Hegarty

I express my sincere gratitude for the opportunity to address the Oireachtas committee hearing today, which is shedding some light on matters pertinent to our sector, those we support and the work of this important committee. Our focus is on the challenges faced by individuals with disabilities in our communities and our collective responsibilities to respond to the needs of these individuals.

The Disability Act 2005 stands as a beacon of progressive legislation, designed to protect the rights of people with disabilities. However, its practical application often falls short, leaving many without appropriate housing and compromising their well-being and dignity. It is imperative that we reassess the implementation of this Act to ensure its intended goals are met. The Health Act 2007, which was crafted to enhance the quality and safety of health and social care services, must also be scrutinised in the context of housing for people with disabilities.

Our journey towards inclusive communities, anchored in Action 74 of the National Disability Inclusion Strategy, NDIS, finds its foundation in the Disability Act 2005. The principles encapsulated in national legislation are further reinforced and expanded upon by the UNCRPD, which Ireland ratified in March 2018. Article 19 of the UNCRPD, which emphasises the right to live independently and be included in the community, resonates profoundly with our national commitment to inclusive communities. However, challenges persist, primarily in the form of limited awareness and understanding of Action 74 of the NDIS . Locally, the community services programme serves as an exemplary model. This programme, aimed at empowering communities and fostering social inclusion, aligns with the UNCRPD's emphasis on the active participation of persons with disabilities in community life.

The call to increase universal design housing is enshrined in the Disability Act 2005. However, the financial barriers associated with implementing universal design principles necessitate innovative solutions. Drawing inspiration from successful grant schemes is crucial in addressing these challenges. The SEAI's deep retrofit programme, founded on principles of energy efficiency, offers insight into how financial incentives can drive positive change in the housing sector.

We must urgently review the housing adaptation grant scheme, which underscores Ireland's commitment to responsive and adaptable policies. Locally, the Dormant Accounts Fund offers one avenue to access funding. Redirecting resources towards programmes fostering social inclusion aligns with our national and international commitments to promote the active involvement of persons with disabilities in community life.

Our dedication to supporting socially inclusive communities aligns inherently with the principles of the Department of Children, Equality, Disability, Integration and Youth and Article 5 of the UNCRPD on non-discrimination, equality of opportunity and inclusion. However, fragmented efforts pose a challenge to the realisation of fully inclusive communities. To amplify our efforts, we can explore an existing framework that facilitates collaboration between communities and organisations and expand upon the successful models for building socially inclusive communities, for example, the success of mixed ability sports programmes.

This collaborative approach promotes international inclusion, thus ensuring no one is left behind.

As we participate in the Housing for All initiative and consider the state of housing in Europe in 2023, Ireland's commitment to the National Housing Strategy for Disabled People 2022-2027 is crucial. This strategy marks a pivotal step towards fostering inclusivity and accessibility within the housing sector. The strategy serves as a blueprint for fostering collaboration between Government bodies, private entities and advocacy groups, encouraging an holistic approach to accessible housing. At its core, the strategy underscores the significance of adequate funding for its successful implementation. One primary obstacle is the retrofitting of existing structures to meet accessibility standards. Adequate funds are required to make homes universally accessible. Furthermore, investing in specialised housing units and innovative assistive technologies will be instrumental in providing tailored solutions. Embracing this opportunity not only transforms the physical landscape of housing for persons with disabilities but also symbolises a true commitment to building a more equitable and inclusive society.

The capital assistance scheme, CAS, a cornerstone of Ireland's commitment to accessible infrastructure, aligns closely with the UNCRPD's emphasis on accessibility in Article 9. However, challenges persist, particularly inconsistencies across local authorities, thus impeding widespread implementation and utilisation of available funds. Simple solutions can be drawn from some existing and very successful grant schemes such as the sports capital programme.

As we navigate the intricate web of Ireland's disability policy and legislation, let us recognise the connection of our national laws with international commitments like the UNCRPD. By aligning our strategies and drawing inspiration from successful models, both locally and globally, we can create a future where inclusivity and accessibility are not just ideals but fundamental rights that are enjoyed by all citizens, regardless of ability. I thank the committee members for their dedication and commitment to building a more inclusive Ireland.

An Cathaoirleach

I now call Ms Nagle to give her presentation on behalf of the Brothers of Charity Services Ireland.

Ms Una Nagle

I am delighted to have the opportunity to contribute. I have taken a more practical approach to my submission. Being a service provider for people with intellectual disabilities and autism for more than 80 years in Ireland, we have seen a lot of changes in society. We promote the development of community housing for people with disability and community inclusion. We have seen lots of changes. As part of the national disability inclusion strategy consultative committee, I have seen a lot of initiatives being rolled out. However, many of them were delayed. I wanted to highlight some of those.

There are challenges under Article 19 of the UNCRPD and it is to be hoped we can get some practical solutions to moving on from decongregation. It is critical to recognise the stresses individuals with disabilities and their families are under in society at the moment. We have to up our game and start planning as a nation to meet the unmet need that exists.

We are members of the National Federation of Voluntary Bodies. A detailed submission on the UNCRPD was submitted in April 2021. I will not go back over that, but there was a transformation. The transformation for people’s lives when moving from congregated settings was acknowledged in that paper. As Ms Weldon mentioned in her opening statement, we acknowledge the role of the person in the planning, and they have to be a key part of the planning process. Our mission and vision are about supporting people to be valued and equal citizens. That is closely aligned with the Government’s policy and we as a nation are acknowledged internationally for that quality in our culture.

My focus is on why there is such slow progress in decongregation, why we do not have a clear pathway for people who are on the waiting list for housing, and on developing community models going forward. There are some strategic uncertainties that need to be addressed and there are some operational difficulties.

In summary, our strategy is to complete our decongregation, and the same is the case for other agencies around the country. I am referring to completing decongregation, ensuring all new developments are community-based and person-centred, and that there are smaller services. Under Time to Move on From Congregated Settings, we work proactively to get our numbers down, but we are now at the stage where we need help. The majority of residents who are remaining on campus settings have very complex support needs and we need clarity on the strategy to develop specialist services. We have to balance that with Article 19 to ensure we prevent seclusion and isolation if we are to develop specialist services.

We wish to highlight the lack of suitability of housing stock as well as the fact we cannot operate quickly enough through the CAS funding system. There are delays there. Therefore, if we identify a property on the market, we need to be able to act quickly and get bridging funding while we await the CAS funding.

Regarding Part V and working with building contractors, this has not really worked for us because site development is premium and builders tend to want to get as many houses on site as possible. On CAS funding applications, some local authorities will say we can only process one at a time. There are difficulties in engaging with housing associations because they have their own governance commitments. The CAS funding is not sufficient and they are incurring deficits in acquiring housing for the disability sector.

I also highlight the lack of funding streams for specialist facilities and respite facilities. We have identified probably four types of housing we should be working on with the model going forward. These include ordinary houses in ordinary communities, which the CAS funding should be able to address. Then we get into designing to support people with complex support needs such as autism and mental health issues. They need quiet environments and space. They need to be able to choose to be part of their local community on their own terms. There are also the issues of complex medical needs and elder care. We welcome the issue of universal design but we do not want for it to be seen as a, so to speak, disability house. The design should be bespoke enough to fit in with the local community. There should be maximum possibilities for integration with the local community.

Regarding other barriers, the lack of a plan is key. When we try to develop as a service provider, we have to source the site, get planning permission, get CAS funding, etc. Again, we feel that if the plan were in place jointly and all Departments were on the same page about the timeframe, things would get done fairly quickly.

We have highlighted that CAS funding is not bespoke enough to support people with disabilities. The amount in the fund is not sufficient. The timing of it can be quite slow. We also highlight the specific developments and whether there are possible solutions. There could be a disability focus on the CAS funding and on the CALF funding. There could be a disability focus on the approved housing bodies, AHBs, many of which do not want to get involved. They see themselves as being in the area of more general housing. There could be a clear pathway regarding who we are planning for, when we are planning for them, as well as a feasibility study. It is quite expensive to develop in the community for certain cohorts of individuals who have specific needs. That said, it is an investment for the future. A short-term funding outlay now will reap benefits into the future.

An Cathaoirleach

I thank the representatives for their presentations. We will now go to our members, the first of whom is Deputy Tully.

Deputy Pauline Tully

It is good to see and hear from the representatives.

It is good to meet Ms Weldon in person and it is good to see Ms Kenny again on screen. I will address Ms Weldon first. ILMI worked on a model of best practice with South Dublin County Council on the making inclusion a reality initiative. Has this been adopted by local authorities? What is Ms Weldon’s opinion on the housing and disability steering group in county and city councils? Is it working well? Is it the correct model? Is there DPO representation? We talk about consultation but Ms Weldon is right that it is much more than consultation, especially when it happens after the fact, after the plans have been drawn up, and it is only kind of a tick-box exercise. Is it the correct model?

We hear all the time that there are insufficient supports for DPOs to properly engage with local authorities or Departments. Often, meetings are held at times that suit the officials as it is their paid employment, whereas the disabled person might be the only unpaid person in the room, may not even have the correct supports given to them, or may not even have the fact acknowledged that they have a job and may not be able to attend. Perhaps Ms Weldon could talk about what supports should be made available to DPOs so that they can engage better with Departments and local authorities.

This question could be for any of the witnesses. Is there sufficient data available to plan properly for the number of disabled people in their communities to enable them to live independently? We probably have a pretty good idea of the number of people in congregated settings. We have many under-65s in nursing homes who should not be in nursing homes. It is not their choice and they should be accommodated properly in our communities. The people I sometimes feel we know the least about are the people living with aged parents, in particular people with intellectual disability. We do not seem to have a clear amount of data to indicate how many people we should be planning for. I often engage with the local authority, and if you are talking about an individual, they will have a file with that person’s needs in it, whether it is supported living or a certain type of accessible housing. However, they do not have an overall number. If I ask the housing officer how many people on their list require supported living, they will not know because they are all individual files. There needs to be a way to look at data better so that we can plan.

Are both St. Joseph’s and the Brothers of Charity approved housing bodies? I am a little bit unclear on that. St. Joseph’s is.

Ms Una Nagle

We have separate housing bodies but they are connected.

Deputy Pauline Tully

Perhaps the witnesses would expand a bit more on the following. They talked about housing with the capital assistance funding scheme. It was said there are issues with the schemes there. Will the witnesses outline in more detail what the issues are and how they could be addressed in making sure there is a disability focus for approved housing bodies? I ask for more detail on the following as well: that the funding is sufficient and timely; the approved housing bodies adhere to universal design when designing and building houses; there is engagement with DPOs at all levels from approved housing bodies; and that there is rights-based model in developing housing for people, and supports.

Ms Fiona Weldon

I will answer on DPOs and my colleague Ms Kenny will address housing. The UNCRPD has recognised the role of DPOs and the importance of resourcing them to be developed all over the country but all over Europe as well. Under our strategic plan and our value of collective empowerment, ILMI is working to develop local DPOs or trying to engage local disabled people in forming local DPOs within their counties. We have already begun this development. We have Sligo, Leitrim, Meath, Dublin and Cork. Through our funding through one of our other community development programmes, we are aiming to establish a DPO in Waterford, Wexford, Kilkenny, Carlow, Tipperary and Kerry. DPOs are for people and run by disabled people, which is important. They are also cross-impairment organisations. Therefore, if you identify as a disabled person coming from any of the intersectionalities of life, you are very welcome. The idea is that we will build power and skills to equip these people to demand locally the supports they need to live the life we want to live as equals.

Ms Kenny might speak on housing.

Ms Claire Kenny

ILMI has been involved in making inclusion a reality. It is about facilitating disabled people in the development of housing through housing and disability steering groups, HDSGs. The network is made up of disabled people from South Dublin County Council. It is about promoting real and effective participation of disabled people across all impairments in county and local representative structures. In South Dublin County Council, they are paid a stipend for attending meetings but the Deputy is right that, in general, disabled people are asked to attend these meetings and it is not always clear if their expertise is valued in monetary terms, so that needs to be looked at.

ILMI has a strong position in housing policy for disabled people and we have been fully involved in the national housing strategy for disabled people 2021-22. A number of our representatives are members on different HDSGs, which is a good step forward because it supports Article 4(3) of the UNCRPD.

Mr. Michael Hegarty

On the numbers of people, the HSE used to have a system called the national intellectual disability database, NIDD, which collected information. It was like a census for people with disabilities. That was changed in recent years to the NASS system. There are 74,000 people on that system, of which 29,000 are adults with disabilities. It has identified that there are 1,700 adults with intellectual disabilities who will require residential care in the next five years. In the 2024 budget, there is provision for 90 residential placements. If that is multiplied over the five years, that is 450, so it is coming in at about 25%. We know the Minister of State with responsibility for disability is fighting extremely hard for the sector, more than we have ever seen before, and I am in the sector for more than 20 years, but it is still falling very short of what is required and the revenue to be able to support those people.

That is compounded by decongregation and the costs involved in that. The economy of scale for supporting people is being lost through decongregation, which has to happen. Ms Nagle mentioned funding for disability within housing and the possibility for it to be ring-fenced, and we are looking at that. We are a small housing body. We build one for ourselves perhaps every three or five years. However, those who are getting those should ring-fence them not just for persons with disability but also disability organisations like us so that we can have access to them to be able to support those we know will not be able to look after themselves.

We also know there are about 1,400 adults with disabilities living with parents over 70 years of age. It is a sad state of affairs for those families. Those parents and their families have given this State enough service and, as they head into their elder years, they deserve to know their loved ones will be cared for appropriately, ideally within their own community and not sent outside it.

That is what St. Joseph's Foundation and other organisations across the national federation strive to do and we are advocating on their behalf all of the time. If we were able to get commitments in order to be able to initially resource and build these houses, either through CAS funding, buying them or retrofitting them, we could do it but there is no multi-annual plan at the moment. In the absence of that we cannot do it.

Ms Una Nagle

I will add to that in response to Deputy Tully's question and would like to add another category to the decongregation along with those in nursing homes, and the middle-aged parents, and that is complex support needs. There are many children and young adults whose families are at breaking point. It is that cohort as well. Increasingly, we find children and adults abandoned in respite facilities, so it is a combination of planning for residential and respite facilities. Families would hold on if they knew they were in the plan somewhere, but there is no plan at the moment.

In the southern region, as a federation we got together ourselves and started to develop a plan in the hope it might be looked at for multi-annual planning. Perhaps something similar could be done around the country because we know who we are planning for and their needs. There will always be an emergency situation we could not predict, but we would have captured 80% of them, I would imagine, as regards their needs going forward. We need to keep families together. It is part of our constitution. We find that families are breaking up because of the pressures, so we need to take it from the grassroots up, keep the family together and increase the respite. We do not have a capital stream for respite developments. There is probably a two-year lead-in time to develop a facility. There are different ranges of that as well. Home sharing has worked very well for a lot of children and adults, but for the more complex individuals we are looking at residential respite to give families a clean break.

An Cathaoirleach

Does Ms Kenny want to come back in?

Ms Claire Kenny

Yes. I will make a quick comment on older parents and disabled people. This is a concern that is raised time and time again by young disabled people and disabled people throughout their lives. They are scared because there is no planning in place for sensible, universally designed homes. Article 19 of the UNCRPD clearly states and recognises "the equal right of all ... [disabled people] to live in the community, with choices [and control] equal to others". Disabled people want to be able to live in their communities. Disabled young persons want to have the same right to live in the community apart from their parents in some form. Their non-disabled peers have that right when they reach a certain age. That is not always recognised or planned for, so that is what I wanted to add.

An Cathaoirleach

I thank Ms Kenny.

Ms Fiona Weldon

I would like to add to what Ms Kenny was saying.

An Cathaoirleach

That is no bother.

Ms Fiona Weldon

As a DPO, we have been running a campaign for more than three years on the right to a personal assistance service. For real inclusion within our communities disabled people need support and should have the right to a personal assistant over residential care. I do not really feel that at this time any of the smaller services are making a real impact in supporting people to have real choice and control over their lives. That is a really serious issue. Having access to the right to choose one's own support and what one does during the day is very important.

Deputy Dessie Ellis

I thank everyone for their input. I have listened to everything witnesses have said and I relate to a lot of what the witnesses are saying from my own experience. I have met a lot of people who are making housing applications, and the process of doing that varies between local authorities. How much help is available or how often do witnesses come across this issue? I have come across it many times.

The other thing in terms of the Part Vs, the local authorities get their 10% but it is not earmarked for disabilities. It is an absolute disgrace that there is no consistency on that. Local authorities vary as well, so do the witnesses do anything on that? As 20% of the population has a disability of some description, surely we can identify a certain amount for people with disabilities in all these planning applications. It just does not make sense and I do not know how much progress is being made on that.

I often find that housing adaptation grants are inconsistent in different areas. I think the witnesses called for a review of that and maybe they have some suggestions about that. Even the process that has to be gone through is quite disturbing and sometimes very messy.

The retrofitting issue was very interesting. While the retrofitting programme is in place with local authorities in general, it is also not in place with people who are in private settings and who may not have an awful lot of money. Retrofitting is quite expensive. Are any suggestions being made as to how that should be enhanced? I know grants are available but, my God, in private houses in particular with elderly people or people who are disabled or have all sorts of issues, it just seems to be a nightmare. It does not seem to be very fair from what I can see.

CAS funding was mentioned. Will witnesses give examples of all the different funding streams? I know CAS is one and that it is identified for particular housing and funding for that. What other funding streams are available to build or to help people?

In making homes accessible, the use of technology is very important. Are we making progress in making this argument when other places are coming on stream? Are we asking for assistive technologies? How far have we progressed on all of those?

An Cathaoirleach

We will start with St. Joseph's Foundation and then go to Ms Nagle and then Ms Weldon on this. Mr. Doyle might go first.

Mr. David Doyle

St. Joseph's Foundation has 18 residential sites. Twelve of those sites are funded by CAS. Some are privately funded or are managed on behalf of someone else.

I am coming up to 20-something years as a parent of a child with a disability and I can never understand it, really. It is about planning. We are in a very easy sector if we want to look at it like that. When our children are born, be it with autism as in my case or with a disability, most people around us or psychology can tell us what they will need for interventions, for schooling, as school leavers, and when they will need a day service. We have been saying for a long time that we need someone to plan it. There are so many different organisations involved between councils, the HSE and others, and one is blaming the other, or I will not say blaming each other but they are on each side. When we apply for CAS funding, we do it as a housing organisation and we have to get the HSE to sign off on it.

Of course, housing is for somebody to live in. When we are doing this and having to get the HSE to sign off on it, which I am not saying there is anything wrong with, is the HSE thinking about what services I need? If that house is built, revenue will have to be put into it. What we actually need is an overall agency, probably under the Minister for disability. We fought for a long time to get a Minister for disability, but she really does not have a budget. She goes to the HSE for her budget or she goes through the annual budget. What we need is someone who looks at this in its totality.

When it comes to the CAS funding, there are three areas. There is this decongregation which Niamh spoke about, and we have an area that should be planned for which we all spoke about. We know who is going to need residential care. If we look at the statistics from abroad, approximately 65% of people are going to need residential care at some stage in their lives. We need to look at that and what stage we are at with that. Then we have to look at the third area: emergency housing, which is really important for families as we speak. At the moment, all we can get is emergency housing. There is very little housing for the other two areas. We should look at an overall budget and pre-empt it. It should be multi-annual so we have a budget set aside for the decongregation, for the planning process, and for the emergencies. The biggest problem with the emergencies is that they are taking all the physical residential places we have, so we have nothing left for the planned places and those people go back on the list for the decongregation.

I have said for a while that I thought respite should also be covered by CAS funding, in that we should be able to plan for respite. Most families are always looking for respite places. This defers the need for a residential place in the future. It prolongs it. Therefore, the more respite and help we can give a family, the more we will find the residential numbers will come down or will certainly be put on the long finger. I feel we should be able to apply for CAS funding for respite and we definitely should not have to get a sign-off. If I want a residential house today, I do not have to get the HSE to sign off on the fact that I need one. Surely the local authority could sign to say that the person with a disability needs a house without having another agency involved that has to think about getting revenue. It would help with our planning situation if we could plan it better and put somebody into the Department for disability to oversee all of this and put it all together.

Ms Niamh O'Shea

On the point about the housing adaptation grant, one of the biggest challenges we are facing at the minute in north Cork, where I am the manager of the children's services, is that many of our families are in rented accommodation and their houses require significant modification. However, it is obviously the landlord's purview as to whether these changes can take place. Some sort of assistance for families in rented accommodation is needed. I would say I have about 20 children who are being lifted upstairs to go to their bedrooms or to use the toilet. Some of those children would be independent if they had access to a stairlift or some other accommodations. Even aside from the rental issue, the process of the housing adaptation grant, as was said, varies significantly from one place to another. The process is complicated. I think the maximum annual income for the household has to be less than €30,000, if a person is going to get the majority of the funding. We had one family that was struggling to put food on the table. The mother had two young adults with autism. Her application for a downstairs sensory facility was rejected because one of her sons was working part-time in SuperValu two days a week and that increased the family's income threshold, which was just ridiculous. That needs to be looked at as well.

Deputy Dessie Ellis

Regarding that point on the sensory issues, the local authorities do not plan for anyone who is looking for sensory facilities. Is that not correct? Certainly, my experience is that Dublin City Council does not. If you are looking for a sensory room or anything like that-----

An Cathaoirleach

I am sorry to interrupt but a vote has been called in the Dáil. I propose that Senators Clonan and Flynn ask their questions now. Maybe Senator Clonan would take the Chair while Senator Flynn is asking her questions and Senator Flynn would chair the meeting while Senator Clonan is asking his questions. The two Senators will keep the meeting going. We have a number of other things to tease out and we will be back. We will hold the point on the sensory facilities from Deputy Ellis. I suspect we will be approximately 20 minutes but if the questions-----

Deputy Pauline Tully

It is the voting block.

An Cathaoirleach

Yes, it is the voting block so will be about 20 minutes. There are five votes. I propose Senator Clonan takes the Chair while Senator Flynn asks her questions and vice versa until we come back.

Senator Tom Clonan took the Chair.

An Cathaoirleach Gníomhach (Senator Tom Clonan)

I have never sat in this chair before. I thank the witnesses for coming before the committee. As an aside, I have been married 25 years this Christmas and for the past 22 years, we have never been able to go out together without our son. In 22 years, we have never had one day's respite. It is not that we look for it but it relates to the question the witness has posed about what will happen when we get older. Who will look after our children when we are older? I spoke to the HSE disability service manager in the CHO in which I live and the usual answer was that they did not know. However, the social worker asked if my son had siblings. When I replied that he had, I was asked if he has a sister and told not to worry because she would look after him. That was in 2019. Therefore, we are all on the same page. We all have the same aspirations and ambitions.

Senator Eileen Flynn

I thank the witnesses for coming in. Until I joined this committee, I did not know there was a housing authority for people with disabilities. It is so welcome. We, in the Traveller movement, are looking for a specific housing authority for members of the Traveller community so I will be in contact with the witnesses again. Not many people even know there is an authority for housing that meets the needs of people with disabilities so it is something that is very welcome.

When I first came on this committee, going back nearly two years ago, I heard that LED lighting outside a person's home can impact or have an effect on people with disabilities. This is only after coming to mind now. I know that in halting sites, there are big LED lights that impact on people's sleep. Obviously, this is around building planning. Do the witnesses have any control over street lighting so that these lights would not go on? Do they think these lights impact on people? I ask their opinion on those lights for people with disabilities. Again, before I joined this committee, I did not have a clue that these lights impacted people with disabilities.

The representatives from St. Joseph's Foundation highlighted the community service programme as a best practice model of promoting community inclusion.

Will they expand on that? How can this programme help disabled people to realise their rights under Article 19 of the UNCRPD? What needs to be done to improve it? How do we let people with disabilities know there is an agency that can support them when they are looking for housing? I do not think many people know the agency is there. I know the witnesses are coming here with a lot of solutions but, in general, what is needed going forward for people with disabilities around accommodation? I would appreciate if ILMI and everyone around the table could answer that question. Our biggest problem at the moment as a society is homelessness and that includes people with disabilities. Last night I had a conversation with one of my friends who said that a large number of gay people are homeless. Gay people can have a disability as well so that intersectionality is important.

Regarding halting sites, under the TAP disability is not spoken about in local authorities in the context of Traveller accommodation. A few years ago, I was on the TAP for a house. I will go back to my own experience. When I was a child, I was in bad car crash and there were no facilities at home in the house. Twenty-three years ago, the local authority was meant to put a shower in my family home and that shower is still not in the family home. The HSE has to approve that. The occupational therapist makes sure the house is equipped. I agree with that to a certain extent but a house is for living in. Once it meets the person's needs, that is what is important. We need to look at that when building and laying out a house.

People are being failed when it comes to social housing in this country. There are thousands of people homeless on our streets. People with disabilities are definitely being failed through housing. One of our witnesses said things have changed in the past 30 years. While some things have got better, accommodation has not. Houses are not fit for purpose. There are issues with lighting on the streets.

I have worked with ILMI for years, on and off. The whole thing is your disability should not define you and you should have the right to live a life of freedom and to make your own decisions when you can. That is important. People should have a safe place to call home that meets their needs.

An Cathaoirleach Gníomhach (Senator Tom Clonan)

Thank you very much, Senator Flynn.

Senator Eileen Flynn

I did blab on a little bit because I know the other members will be gone for 20 minutes.

An Cathaoirleach Gníomhach (Senator Tom Clonan)

I was conscious of that. Would ILMI like to address some of the points?

Ms Fiona Weldon

There are many questions and many answers but to me and ILMI there is only one answer and it is real inclusion. I do not think we are talking about real inclusion here today because we are talking about services and segregating people and making them live outside the normal rhythms of life. We know from the NDA report on the national disability inclusion strategy that the next inclusion strategy must capture the lived experiences of disabled people in a meaningful way. We have a hierarchy of disability. Those with intellectual impairments are left behind. The Senator spoke of the provision of housing and the right for people to live in their own house, as I mentioned earlier, with supports. Fundamental to that is choosing who supports you. There are lots of documents and a support policy for developing universal design homes and communities. There is a 60% chance a new home will be occupied by a person with some form of impairment at some stage of their life. Most disabled people acquire their impairment. Most people lose mobility as they age. We are really good at putting people into institutions, historically, but not really good at asking disabled people what they want. We are really good at asking service providers. ILMI is about local representation, local DPO development and funnelling and resourcing of these spaces so people have a real voice. Those are some of the answers. There is lots more.

Ms Claire Kenny

First, I echo everything that Fiona has said. Second, yes, Senator Flynn, we are intersectional human beings. We are sisters, brothers, daughters, mothers and fathers. We have work life and all the daily stresses and rhythms of life, the same as our non-disabled peers. Accessibility is often thought about as wheelchair accessibility and physical environment impacting those who are wheelchair users, for example. However, it is much broader than that. The lack of accessible communication of information impacts members of the disability community, such as deaf people, people hard of hearing and people with impairments like that. Accessibility impacts on being spontaneous as a disabled person. There is a huge rural-urban divide in terms of accessible transport, services and broadband. There is a complete lack of joined-up thinking in how systems are developed in terms of accessibility, on the whole. The national strategy for disabled people is organised by the national Housing Agency but each local authority has a HDSG and they feed back information to the national strategy. There are also barriers and a lack of joined-up thinking in that a disabled person cannot move into a house if there are not supports available at the same time, such as PAs, assistive technology and devices like that. I hope that covers the Senator's question.

An Cathaoirleach Gníomhach (Senator Tom Clonan)

I thank Ms Kenny. Perhaps the representatives of the St. Joseph's Foundation or Brothers of Charity Services Ireland would like to come in.

Ms Una Nagle

I would like to make a few points. I thank Senator Flynn for that. We in the intellectual disability world, if you like, support people who are on a broad spectrum of ability. In recent years, we have found ourselves in reactive mode rather than proactive mode. Ideally, it is down to planning. Our approach must be person-centred as we educate and support individuals who are living with elderly parents to ensure they have the maximum choice of independent living. There are supports in place for people although probably not enough of them. It is about supporting people to live in their own apartments with visiting supports. That would be the ideal scenario. Too often, we have seen people coming into residential care in a crisis situation when, in fact, with support, they would be quite able to live in their own apartment and enjoy quality services in their local communities. The key message we want to get across is the need for planning. Our approach must be person-centred. There is a spectrum out there and as an organisation, we need to be able to promote independence. We find ourselves constantly in reactive mode due to the fact we do not get the time to do the proactive work. On that basis, I strongly advocate for people to sit down, identify who we are planning for and what training supports we can offer before it becomes a crisis situation.

Ms Fiona Weldon

Funding and resourcing disabled persons organisations, DPOs, will help to build the capacity of local disabled people to say, collectively, what they want. You cannot do something without asking us beforehand. I did not mention co-creation as opposed to consultation. Those things are very different. We need to understand that we are all intersectional with all sorts and types of impairment with which we have to live. Our biggest disability is the structures in place. We allow it to happen. We continually fund support services that are not doing a great job. That is a big issue.

Mr. Michael Hegarty

I will answer the Senator's question about the community service programme, which is for local community halls and sports and social activity clubs. Different NGOs come together to share their information about what they can do to support people with disabilities. Most of them have a disability inclusion officer, who may be a person with disabilities, to work together to share what they can offer and what others can offer them. They come together collectively. The sports capital grant, which I referenced earlier, and other grant schemes, are pushing social inclusion because I am led to believe that the waiting times to access those grants if they include people with disabilities are quite high. Whether sports agencies want to go that direction or not, they know that if they want the funding to deliver on their programmes, they have to include people with disabilities. That is the way we should go and that is where the community services programme comes together to share information.

We are an approved housing body, as opposed to a housing authority. A number of other agencies throughout the country are also approved housing bodies. The Senator asked about supporting the Travelling community of which she is a member. Perhaps there is something with which we can help. I will offer up Mr. Doyle in that regard because he is my expert on housing. We will do anything we can. Collectively, marginalised communities will stand taller together and there is no doubt about that.

I will defer to Ms O'Shea, who is an occupational therapist, on the question of LED lighting. She might have a little insight in that regard. It would not be my area.

Ms Niamh O'Shea

I thank Mr. Hegarty. The effect of LED lighting depends on the disability. For children who are autistic and have a visual sensitivity, LED lighting can be overstimulating and that lighting would need to be changed. Document M of the building regulations stipulates the different types of lighting that would be most suitable depending on the disability in question. I am not sure if that answers the Senator's question. I would refer back to document M, which stipulates the best lighting that would be most suitable depending on the environment. LED lighting can sometimes create a sheen which can be very distracting. I do not want to discuss that because it is not my personal experience. I refer the Senator to document M.

Senator Eileen Flynn

In the early days after I joined the committee, that was an issue that was brought before us. It is important if we are talking about accommodating people that the area around them is also fit for purpose. Numerous times at this committee I have raised the issue of making our play parks suitable for children with special additional needs. That is critically important. If we are looking for equality of opportunity, it starts in the playground for a child.

I am sorry that I used the wrong wording earlier. I will correct the record. The situation is the same with respect to CENA, which is a Traveller-approved housing body for which we are trying to get supports. I did not know until a few days ago that the St. Joseph's Foundation existed. It is about getting that information out to people.

People can be left waiting in our society. We have been waiting 23 years for a shower. It is appalling to think that is the case for a child or a family under stress. The brother of a friend of mine has a disability. When I first met my friend, the mum and dad used to look after the son. That was the job of the parents. The mother now has Alzheimer's disease and the father passed away a few years ago. My friend fought to get his brother into independent living. His brother can now walk up and down the bus and do anything anyone else can do. He is living an independent life through the supports we have for people. Our guests are doing their best but I do not believe the Government is doing its best. To me, it is simple to implement a measure that requires every park in this country to allow access to a child with a disability.

An Cathaoirleach Gníomhach (Senator Tom Clonan)

I ask the Senator to switch around. I will explain why in a moment.

Senator Eileen Flynn

I thought the Cathaoirleach Gníomhach was going to let me talk all evening.

Senator Eileen Flynn took the Chair.

Senator Tom Clonan

I apologise that I was not here earlier. I am also a member of the Joint Committee on Children, Disability, Equality, Integration and Youth, which is sitting at the same time. I will have to go back into that meeting shortly.

An Cathaoirleach Gníomhach (Senator Eileen Flynn)

As will I.

Senator Tom Clonan

I thank our guests for their contributions. Caring is the pathway to independent living. I was disappointed to read the wording of the proposed constitutional amendment. It allows the State to step back from its obligations and to put that into our Constitution would be a travesty. I do not know what to think about it yet but I was disappointed to see the wording as it is. I have one very specific question about the capital assistance scheme and the moneys that are there.

What is the single biggest recurring obstacle preventing organisations and individuals from accessing CAS funding? What is the pinch point?

Mr. Michael Hegarty

My response may be too critical but I believe some local authorities do not have the will. They are subject to advocacy from so many angles that it is easier to send money in other directions rather than to us. There is also an element of finger-pointing by Departments, from the Department of Health to the Department of housing, on who should support persons with disabilities. They are falling between stools in that regard. This could be one reason the model is not working. As Mr. Doyle said, there needs to be an element of ring-fencing for CAS funding, retrofit funding and other funding, but responsibility should all be transferred to or put under the Department responsible for disability, the Department that knows about this. There are too many Departments involved, creating such difficulty for us because we all have to find out how the Department of Health works in this matter, how the HSE works and how the local authorities work. We operate across two local authority areas. It comes down to there being too many people involved in trying to deliver one outcome.

Ms Una Nagle

The ceiling is too low given the additional needs of people with disabilities. It is just over €90,000 per unit. The staff support area is not always reckoned to be a unit. We recently bought a four-bedroom house in advance. Since there was a delay, we could not get the CAS funding in advance. The house cost us €500,000 but the maximum we could draw down was €360,000. The authorities do not take in the additional environmental needs and the sensory needs of the residents. I advocate a disability arm with respect to CAS funding so it can examine this in depth and come up with an appropriate mechanism and level of funding.

Mr. Michael Hegarty

One house per organisation per year on the part of the local authority just does not make sense in that we may have dozens, if not hundreds, of people in an equal state of critical need.

Mr. David Doyle

It is like the tail wagging the dog when the disability authorities come to our organisations asking whether we can build a house first, or do three houses every year for the next three years, on the basis that the money will be got for us through the CAS. The agencies are willing. We will do the work but someone needs to take the lead. That is why I referred to one oversight body. The Department responsible for disability must be borne in mind in this regard because the numbers have been given and because the federation will have given the numbers, knowing the number of people involved. Nobody is sitting down asking how to proceed. We are going to have to achieve this over a number of years. There is no doubt about that because the number is fairly high. Over, say, the next ten years, why not go to the various agencies and ask them to build three houses every year for the next three years, or four houses, depending on the size of the agency? They are relying on the agencies to do it.

Senator Tom Clonan

Who, in effect, is the lead agency through which the funding has to be accessed?

Mr. Michael Hegarty

For the building or-----

Senator Tom Clonan

For the CAS funding.

Mr. Michael Hegarty

It is the local authority.

Ms Una Nagle

There is also a fundamental issue that relates to creating groups of individuals who may not want to live with one another. It is a fundamental issue in the face of Article 19. It is about economies of scale. We have to offer four places to pay for the house, yet the four people may not want to live together. If they do, that is perfect. We do not really know that, however.

An Cathaoirleach Gníomhach (Senator Eileen Flynn)

The view that all people with disabilities can go in a certain location is absolutely wrong.

Senator Tom Clonan

My final question, on disabled citizens’ voices, is for Ms Weldon and Ms Kenny. Ms Weldon said that we should move forward ideally by co-creating, not just by consulting or, as is often the case, saying, “Take it or leave it”. Most commonly, people are told there is nothing for them, meaning they must rely on their elderly parents until they go into crisis, after which, as was suggested to me, a sibling is expected to take on the responsibility. I am very disappointed to hear there is reluctance in local authorities to be proactive in this regard, but I am not surprised. This has been a common feature of our experience. Apart from suggesting the full ratification of all the protocols of the UNCRPD, which mandates DPOs to be the first line of engagement in anything to do with the disability community, can the delegates point to a Department or initiative that allows them a co-creation opportunity? Ms Kenny or Ms Weldon, or both, may respond.

Ms Fiona Weldon

I will go first. Ms Kenny will also have a lot to say about this. One of the main things I believe is wrong is that disability organisations are industries and are seriously letting disabled people down. There is no accountability.

I agree on the issue of care. Disabled people do not need care; we want and need support, and we need it in the form of a personal assistant service. The other point is that we have this notion of being independent and being as able as we can to pass as normal. Our society says that unless we look like or look more like a normal person, we are not accepted and need to be fixed or cured.

Another point concerns independent living, a concept born out of the disabled people’s movement. It is very much about inclusion, supporting, nurturing and the co-creation of our involvement in everything that affects our lives. Here today, we are still talking about disabled people and how to come up with a solution. The solution is equipping and funding DPOs locally and nationally and asking disabled people for our views because we are the best experts on their lives. We do not realise that, but they are a power. They can really effect change, but only if they are listened to.

Ms Claire Kenny

To fully implement the UNCRPD, effective policy-making forums must be established to foster collaborative spaces with disabled people to develop and implement effective policies locally and nationally. Including us only at the consultative phase is too late because there is a lot of nuance to impairment and also to the disability community as a whole. Running consultative forums involves expertise that disabled persons’ organisations have because they consult their members. With regard to every submission we ever send to this committee or others, we have to run consultative spaces with our members, of various impairments. We have the expertise and are guided by our members on whether certain accommodation works.

Therefore, the consultation phase is too late. Also, for local authority planning, there is only a certain budget. Ideally, we would love to say make everything accessible and universally designed but we know for a fact that is not feasible because there are restrictions, and funding is limited. You would only be given a certain amount of money to make a certain area adaptable. Why not consult local DPOs and say there is a possibility of making a footpath, an area or, as Senator Flynn said, a park, accessible? Why do they not go to their local DPO in Sligo and ask what would that look like for disabled people or should we focus that money elsewhere so the money is not wasted and it makes a difference in disabled peoples' lives in that particular area?

Senator Tom Clonan

I have to go, unfortunately, because I have to attend a meeting in the committee room next door. It was really great to meet our guests. I am just so sorry to have to leave. I thank them for their time. It is late in the evening. We appreciate it. I apologise to the Chair.

An Cathaoirleach Gníomhach (Senator Eileen Flynn)

I thank Senator Clonan. I have to go to that committee as well. I will be there in a few minutes.

What comes to mind listening to the women from Independent Living speak is the phrase, "Nothing about us without us." It is so important that people, families and the organisations that work with people affected by issues are at the heart of decisions and choices, such as what is going on in communities. I just wanted to say that.

We will suspend for 15 minutes until the Chair comes backs.

Sitting suspended at 7.02 p.m. and resumed at 7.23 p.m.

Deputy Michael Moynihan resumed the Chair.

An Cathaoirleach

Other members will come along from the Chamber. I wish to raise a couple of issues. Over the years the CAS programme was very successful in delivering services but right now it is almost stopped. The service providers have ceased to use CAS. Why is that the case? What inconsistencies do the witnesses find between the Departments and the local authorities? If either one of the service providers were to identify a property today in a location, how difficult would it be - it was mentioned that there would be a need to secure a bridging loan first without a guarantee of CAS actually going through all the hoops - and how much time would it take to for the witnesses' organisations draw down CAS? What challenges are faced when drawing down this pot of money that is within the Department and that is going back into the Exchequer because it is unspent year after year even though there is a huge housing need?

Ms Una Nagle

The spectrum of support is quite wide. For people who can live in ordinary houses in ordinary communities, and I will take that group first, for planning purposes we are always on the look out for suitable housing. Driven by the needs of the individuals and their wishes, we aim to find an appropriate house. When we do come across it, we invariably must put a deposit on it straight away and close within a certain period. In that period, the application for CAS funding must be submitted and we must verify with the council that the people involved are on the housing list. The council is not that open to putting everybody on the housing list so there may be a delay there and that is one barrier straight away. We should ensure, for planning purposes, that everybody awaiting accommodation is on the housing list and accepted by the council.

The second barrier is the amount of funding that is available for CAS. We have some people living in their own apartments who need assistance, so there must be staff living in the house or in an apartment in the same complex to support them. Depending on the number of individuals, that second apartment is not always recognised for CAS funding purposes, so you are left with a sum of maybe between €93,000 and €95,000 per unit. You will not get an apartment for that. That is the third barrier, which is the gap between CAS funding and the actual cost of a facility.

We also find another reason CAS is not looked as is because it is seriously short of what is required for purpose-built accommodation. It is not the stream that would support such developments. Therefore, we either have to increase CAS funding to meet that need or find a separate funding stream. Agencies are looking to see whether we can identify funding streams, but it does involve us incurring debt and we have to mortgage some properties against it. We feel this should be a problem that is taken on board by the State which should work with us and plan for the need that is out there.

Mr. Michael Hegarty

I echo everything that Ms Nagle has said about the funding amount not being enough for houses. There are also different approaches across different local authorities. Some are very welcoming and will support us as a housing body and an organisation to deliver housing under CAS and, on occasion, will provide up to 100% of the funding. Other local authorities do not help organisations like ourselves or, more than not helping, will not assist them as much as they possibly should.

While the Chairman was absent earlier, we were asked to outline one or two things that would help the situation. Number one, money needs to be ring-fenced from within CAS for persons with disabilities and disability organisations. That needs to be managed by the Department with responsibility for disability matters. There are too many different Departments and agencies involved. Before we can have CAS funding for the people we support, we must make sure there is revenue coming from the HSE to support them when they move into their houses. So you have four people moving into a house who need that revenue before the local authority will even consider it. As there is no multi-annual planning at the moment, that cannot be given so drawing down money from CAS cannot occur. It is a cascade of barriers that are put in our way. I recommend that the Department ring-fences money for the scheme.

There are organisations like ourselves and other members of the national federation, the Brothers of Charity and others, throughout the country that want to deliver. If we were told we had land and money so go deliver, then we would deliver for people. We would deliver appropriate housing suitable to their needs if we were given the option to do so. We have ears on the ground so we know the needs and requirements. If were given the opportunity, we certainly would not let anybody down.

Also, because for CAS you have to put four people together, often they might not be a peer group, which goes against the UN charter in terms of who you live with. To a certain extent, we must cut our cloth according to measure. We understand that but at the moment there is no cloth that we can get. We are certainly willing to do that to be able to uphold people's rights as much as possible. For example, the Minister announced 90 new residential placements and funding for that next year at a cost of €220,000 each. That revenue is there but there was not one brick within her funding because she was not able to do it because the revenue comes from a different Department. Therefore, a cohesive and collaborative approach towards this is needed.

It should be easy to bring those people together. We are certainly more than willing to sit at that table, as we are here, to try to support the committee in its recommendations to drive on and deliver through CAS funding.

An Cathaoirleach

Deputy Ellis can return to his point. We were interrupted by the vote.

Deputy Dessie Ellis

I am curious about the sensory rooms, which I spoke about with the Chair. I know Dublin City Council does not approve of sensory rooms, which seems strange to me, but it was pointed out that the local authority in Limerick does. Is that correct?

An Cathaoirleach

Yes.

Deputy Dessie Ellis

Cork City Council, like Dublin City Council, does not. There are awful inconsistencies. I have another point. The bar seems to be set high in a lot of local authorities when it comes to medical issues. This is the case in particular for people with intellectual disabilities and mental health issues. The bar is so high for them to get places, and there are a lot of loops they have to jump through. In the case of someone with mental health issues, the mental health team has to endorse the decision. People have to go through all of that. For someone who is struggling, that is an awful lot to go through. I have had experience of it on a number of occasions. That needs to be addressed and we need to stop some of what is going on, because it is ridiculous. I have seen cases of people being refused medical priorities, which are beyond comprehension, but in particular for people with autism. Whatever it is, a person with autism is in real trouble trying to get certain services. I do not know if it is the same with all local authorities, but it is something I have seen.

An Cathaoirleach

Moving from Deputy Ellis's point, CAS funding is operated by the Department of housing. It is under one regulation. That local authorities can have two different interpretations of the scheme beggars belief. Last week, the committee signed off on a detailed report on legislation. If we were able to do one thing, it would be to put together in one or two pages how to deliver the scheme if funding was available. That is what we are trying to get at. We hope to have the HSE and the county and city managers before the committee in early January. We are trying to understand from the witnesses the challenges they are experiencing and how we streamline the scheme. The witnesses would be of the opinion that CAS is operated under the same regulations, but with different interpretations by local authorities.

Ms Claire Kenny

To return to the observations and recommendations for the review of the housing adaptation grant, the ILMI made a comprehensive submission at the time. I will read out a few brief points.

The Housing Adaptation Grant is restrictive in terms of its income threshold and means test. The qualification test is based upon your combined gross household income from the previous taxation year. That threshold may no longer be reflective of your current household income.

Disabled people should be viewed in that circumstance under their own income, as opposed to their family income. It should not be taken as a family thing because the adaptation is for the disabled person. The submission also touches on the cost of disability, with the threshold applied to the building of new works. The house has to be built to wall plate level, which can be restrictive. It is also a retrospective grant in the sense that a disabled person, or the family helping him or her, must already have the funds to do the adaptation. They then apply for the grant afterwards. That can take time and put disabled people in financial jeopardy.

Ms Una Nagle

Each local authority area has a housing and disability steering committee in place under the previous NDIS. I would ask them whether everybody who needs housing is on their housing list, what their plan is and how they will prioritise? Have they done a feasibility study on needs and what can be delivered within a reasonable timeframe while being accountable for how they allocate funding? While we are represented on those committees, they seem to be going around in circles and little planning is done in those forums. The intentional strategy was that it would be a steering group to oversee the delivery of housing for persons with disabilities.

Ms Fiona Weldon

There was a lot to unpack there. It is like an onion, with many layers. The cost of disability can be as much as €60,000 and that figure comes from a Government report. A few weeks ago, the HSE stated openly that disabled people were better off in nursing homes than in a community. That was quite scary. The thinking among disabled people is that there is segregation and they are being put away. Why are disabled people not getting involved in their local communities? It is not because they do not want to but because they cannot do so. In Ireland we have one of the highest percentages of employment among disabled people. Only 30% of disabled people are in employment. Disabled women are less likely to go to college, work or earn the same amount as men. This comes into our intersectionality with our non-disabled peers. Our funders and the HSE are saying it is okay for disabled people to live in nursing homes and they are better off in them. That is damning, is it not? There is something in the ideology of looking after us that we need to have assigned specialised support in the form of a congregated setting, which is what a nursing home is.

An Cathaoirleach

I apologise again for the interruption and thank the witnesses for their engagement. If there is anything they think we should advance, they should feel free to send it to the committee. The more information we get, the stronger our hand can be when we have the CCMA and the HSE before the committee. I thank our members for their engagement. I also thank our background team who do a massive job keeping this committee running.

They do a massive job in keeping the committee running and I thank them one and all.

Mr. Michael Hegarty

The southern area federation, of which Ms Nagle is also part, includes St. Joseph's Foundation, the Cope Foundation, the Kerry Parents and Friends Association, L'Arche and CoAction. Prior to the committee finishing its deliberation and listening, I assure its members that in collaboration with the Disability Federation of Ireland we will provided the information required to support the committee on the real lived experience of our organisations which are at the front of this.

Ms Una Nagle

The federation has a subcommittee on housing and it may wish to make a submission, if that would be okay.

An Cathaoirleach

The more information we have the stronger our hand is.

The joint committee adjourned at 7.40 p.m. until 5 p.m. on Wednesday, 13 December 2023.