Maria Bailey (Dún Laoghaire, Fine Gael)
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No. 6 on our agenda is housing for people with a disability. I welcome Mr. Tony Cunningham from the Irish Wheelchair Association and Ms Siobhán Barron, Dr. Gerald Craddock and Mr. Edward Crean of the National Disability Authority to the meeting. Before we begin, I draw the attention of the witnesses to the fact that by virtue of section 17(2)(l) of the Defamation Act 2009, they are protected by absolute privilege in respect of their evidence to the joint committee. If, however, they are directed by it to cease giving evidence on a particular matter and continue to so do, they are entitled thereafter only to qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given and asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable. 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 the Houses or an official, either by name or in such a way as to make him or her identifiable.

I invite Mr. Cunningham to make his opening statement.

Maria Bailey (Dún Laoghaire, Fine Gael)
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I invite Ms Siobhán Barron to make her opening statement.

Victor Boyhan (Independent)
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I thank the representatives from the Irish Wheelchair Association, the National Disability Authority and everyone else for their presence. In particular, I welcome Senator John Dolan who has an amazing track record in advocating for the disability sector, which I am sure is acknowledged by everyone in both Houses of the Oireachtas.

I thank Mr. Cunningham and Ms Barron for their quality submissions. We received other submissions that we have circulated and read. I thank the representatives for taking us through them again. The strong message that has come across from all of this is that we should provide the capacity to live independently with dignity and respect in the community. A home is more than just a house. Living is more than just a roof over one's head. Living is about being able to access one's community facilities. It is about meaningful engagement in one's community. It is about having equal access to that engagement be it to partake in one's community, employment or whatever. A lot of the committee's emphasis can be about housing, and bricks and mortar but the organisations present went further and rightly so.

Today's meeting is the first of two meetings on housing for people with disabilities and the second meeting is scheduled for 10 July. There will be other representatives from local government and Dublin City Council. Housing is part of a process and what the representatives have shared with us today will feed into the bigger picture of policy, which is welcome.

I was struck by recent research conducted by the Economic and Social Research Institute, ESRI, and the Irish Human Rights and Equality Commission that shows people with disabilities were twice as likely to experience discrimination when accessing housing, which is profound and disturbing. We need to do something about the situation. I make that point because it came out in the literature. I was not fully aware of such discrimination and only had anecdotal evidence. However, the other day I spoke to a woman who lives in one of the Dublin local authority areas and she has waited nearly 12 years for housing. Every time she approaches her authority she is told she can have accommodation eight or nine miles away from where her supports are located. I mean the people who care about her, love her and are there for her. When she makes her case she is told that she is choosy and difficult, which she finds very frustrating. She needs to live on the groundfloor. She also needs to be able to access a community on the street because that is where she goes out to read her newspaper. Her limited access allows her to get out in and around there.

Earlier today it was clearly confirmed that the targets and timelines to transition people with disabilities away from congregated settings have not been reached. That is extremely disappointing because this is a group of people who have historically had other issues and difficulties. The decongregation and transference of people from institutional care back into the community was flagged as being a progressive bit of work. I live near one of these institutions that is now closed. The people did not have happy experiences on many occasions and were forced out. The move was not altogether about making facilities better for them. They were taken many miles away from where they had lived for ten years and away from where they had built friendships and relationships. Clearly this is a very important issue so what is the problem with accessing housing? These people live in congregated settings. The Government policy is to close these places down and get people out. I always argue that there will be some people who want to stay in more formal residential settings. Housing has to be all about rights and choices. I have met people who have been forced to move from community settings into independent living arrangements but were not given supports and, therefore, did not like the new arrangement. We must respect all aspects of this issue. This is about empowering a person to make decisions about where he or she wants to live. I ask the witnesses to share their views on this matter. Is there a process of review? If so, what is the review mechanism? What do the witnesses think about Departments and relevant agencies in terms of people being moved from congregated settings into communities? Why is the transition not happening as fast as first envisioned? What are the pitfalls and problems? How does one overcome the pitfalls and problems?

Can the witnesses share with us their experiences of how local authorities have addressed the public housing needs for people with disabilities? In my experience, some local authorities are good and progressive yet other authorities tell people they do not have the facilities. The Part V obligation was mentioned by one of the witnesses. Sometimes local authorities offset developments, particularly small one-off developments by taking money or by dealing with other issues but these strike me as ideal situations.

The following point was well made in one of the submissions. We do not want disability zones. We want people living meaningfully right across the community so it strikes me that there are opportunities for one-off units, particularly in the private sector. We need to ensure that the target of 7% happens in both the public and private sectors. Also, there are elderly people who have different degrees of disability. I ask the witnesses to talk me through this aspect.

The Part V obligation is very contentious in some local authorities and they are not delivering. I ask the witnesses to comment further on the issue.

The RIAI has given us a brief questions and answers submission, which the witnesses have not seen. I am sure that the committee will be happy to circulate it to the witnesses. The RIAI compared this country with other European countries and said: "We understand that Ireland has no mandatory standards for either accessible or adaptable housing", and it is badly needed, with which I agree. I ask the witnesses to talk us through how they advocate for that because if the work of this committee is to have meaning and take the work of the delegations further, then clearly we need mandatory standards in legislation.

Finally, I wish to draw attention to Fingal County Council as it has recently drawn up an excellent document entitled 10 Ways To Construct A More Lifetime Adaptable and Age Friendly Home. The document is really positive and conveys its message simply. I appeal to the organisations present to not only engage with local authorities but to engage with the elected members of local authorities because they will find them to be advocates who will advocate for the objectives that we all want. Sometimes we tend to rely on the executive, architects and housing officials, be they in local authorities or Departments. I suggest that the organisations present would be much more effective as well as keeping them onboard to advocate and to have a similar engagement with them as they are having with us here. I urge them to have that engagement with local authorities because it would be fruitful and generate good results.

Again, well done. I thank the witnesses for their very detailed submissions and ask them to address the few queries that I have raised.

Mr. Tony Cunningham:

I will start with the congregated settings element, although it is not an area with which we work directly. In terms of housing, the members of the Irish Wheelchair Association, IWA, are community-based. We are talking about people who could be living with their parents and their siblings who have never had the opportunity to have a home of their own due to lack of finance to purchase or build, lack of social housing, lack of available housing to rent and high renting cost. We are also talking about people who are inappropriately placed in nursing homes and hospitals, people who are homeless who are wheelchair users, and people who have a disability. These are two very different groups of people. What is common to everybody is humanity and a person's right to have a home. We all get institutionalised one way or another, be that in a large institution of 100 rooms or one's family home with one's family, but we get used to that. As a country, we have an obligation to lead and to encourage people to flourish, to become independent and to experience that which they do not necessarily know. Many of us can be sheltered within our own workspace, living environment or social environment. It is through new experiences that one builds confidence. If someone had asked me 20 years ago to attend a meeting in Leinster House to talk to this committee I would have replied, "not on your nanny", yet here I am. Experiences bring growth. The Government has to encourage growth and give people the opportunities to grow.

IWA's vision is one of Ireland being a country that would lead in terms of its inclusivity. We are not doing that. We should be ashamed in terms of the lack of housing for people with disabilities. In terms of Part 8, an approved housing body can engage with a local authority in regard to the purchase of a housing estate that is being developed that does not comprise any wheelchair accessible housing. The Irish Wheelchair Association would also like to be able to engage under Part 8 but at the design stage to acquire some units for wheelchair users through capital assistance scheme, CAS, funding. However, the design and planning stages are completed before the houses are released for purchase to the approved housing bodies or the local authorities. The local authority, with the support of the Department, will give the go-ahead for these estates because they might comprise 100 three-bedroom, semi-detached, two-storey houses that will house families. There is no sustainable community in terms of people with disabilities or older people. Anecdotally, many local authorities would have accepted the funding from the Part V obligation or a one-off house in another location. For obvious reasons, it could be two or three years before the development comes to its end. We have an immediate housing need now such that when developers offer one or two units in another location or in an apartment block, the local authorities seize the opportunity to provide somebody with housing immediately. In my view and that of the Irish Wheelchair Association, we need strategic planning at the early stages to ensure we have inclusive communities throughout Ireland. Where State funding is being used to provide housing, there must be investment in sustainable housing developments of mixed tenure. This is provided for in policy.

In preparing for this meeting, the thought crossed my mind that we could build a few houses with all of the documentation on this issue. The intent and the policies exist but early stage design is not happening. Following on from discussions with various disability organisations, we have proposed that 7% of every development be wheelchair accessible, but not wheelchair exclusive, homes. This is about the structural design being such that it caters for wheelchair users. In regard to Part V opportunities, I am sure some of them are availed of but many of them are being lost.

On personal assistance, PA, services, the IWA pre-budget submission, which I am sure members have received, calls for an additional 500,000 personal assistance hours nationally for people with disabilities to touch the need that is not being met currently. There is definitely a clear link between the two issues. In theory, it all stands up. We need houses for the personal assistants to kick in but there is no housing. It is not being designed or built and there does not appear to be any strategic planning around it. The goodwill is there but the offers are not coming out. We need both. We need the PA hours and houses. Incidentally, all of these issues are contributing to the economy. If people get their independence, they can work. Personal assistants are employees as well. All of this generates income and inclusive societies.

Ms Siobhán Barron:

I will start with the key demands because I think they cover a lot of the points that have been raised. Some of the issues we see relate to housing planning. I refer for example to decisions on the site of very small apartments. One would question whether they would be habitable by many persons with disabilities given their different needs. That applies particularly to persons with wheelchairs, but also concerns the wider needs of others. We have always advised that there should be a universal design approach to that. We have submitted guidance on how to approach it and we feel that it would make a significant difference if it could be addressed in the future because many large developments are being planned and invested in. We gave the example of the approach taken by one local authority which set a target for the number of universal design homes. As the Deputy noted, they can be designed in such a way that they can be easily and very cost-effectively adapted over time. We are hearing from at least one local authority area that by effective design, a standard 100 sq. m three-bedroom house can be a really accessible home. It does not represent a huge extra cost. We also hear anecdotally that the cost of developing a universal design home is about €4,500 more than the cost of an average home. We are going to carry out a cost-benefit analysis exercise, but that is the information we are hearing anecdotally. The long-term savings that can be derived from that by avoiding expensive relocation, alternative types of residential care and future retrofitting would very easily meet the increase in cost.

As the Deputy stated, a revision of Part M is urgently required and could provide the basis for making a lot of these requirements mandatory. There are potential ways to incentivise the market, particularly developers. Perhaps there could be a VAT measure to encourage more universal design developments. As pointed out earlier, the plans coming forward are sometimes already so advanced that it is difficult to row back.

We believe that a lot could be done through disability impact assessments of rules, regulations, policies and programmes. For example, we hear about cases where people have gone for affordable housing and taken out the loan, supported by the local authority, before acquiring a disability later in life. They find that the clawback provision prevents them from moving to alternative accommodation. Disability-proofing would involve looking at the rules in black and white and realising that they have a discriminatory effect on some people.

Promoting and enforcing a universal design approach is about the sustainability of communities. It allows people to live within a community rather than an area where a group of homes for persons with disabilities or older persons is clustered together. Universal design provides for that integrated approach. It allows older persons to stay in their homes for longer instead of going into nursing care. There are interesting examples of this. We operated a joint project with the Department of Housing, Planning and Local Government, namely, the homes for smart ageing universal design challenge. The winning project looked at how an older person could remain living in a three-bedroom house, close to neighbours, services and facilities, by converting the upstairs area to a separate apartment. This could accommodate somebody who needs housing while providing an opportunity for company, a bit of security and better use of accommodation. The winning solution went on to be progressed and the Department is now funding five further projects on that. There are lots of practical things we can do, but rather than big projects it is about rolling this approach out as some kind of national programme.

In the transport sector there are good examples of persons with disabilities on boards. However it is important that there are effective means of engaging with persons with disabilities in design and planning. There are housing and disability steering committees in each local authority. We must consider how they could be more effective in their engagement, the action plans they devise and the targets in those plans. I refer also to cross-agency work. National strategies are in place but cross-departmental work must happen. In the past, each Department had a sectoral plan outlining how it would progress issues for people with disabilities, inclusion, accessibility matters and other issues. Within those plans Departments were obliged to outline how they would work collaboratively with other Departments and agencies on particular issues. There are many ways to progress housing accessibility in that way.

John Dolan (Independent)
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I will conclude on the grant waiting lists. Marvellous things have happened in the past ten or 20 years in terms of kids being able to attend regular schools and being educated with their brothers and sisters, but most adaptation grant applications are from families that are trying to kick off family formation, pay high mortgages and rents, etc. They are living in houses that are not adapted and do not have significant capacity to be easily adapted. That is a fact of life. As such, families join the waiting list but the income criteria and so on make it virtually impossible for such families to have houses in which their children can live and operate. That is a vignette.

Regarding decongregation, there are a further 1,300-plus young people, that is, under 65 years of age, in nursing homes. The HSE has accepted that some of them should not be there. None of them should be, given that nursing homes are designed for people who, on average, are 80 years of age plus and who live just two years of their lives there. Someone aged 60, 50, 40 or 30 years could be put in one of those homes. What is being done to maximise independent living?

I thank the committee members for their work on this matter.

Mr. Tony Cunningham:

On the grants scheme, I have a copy of the pre-budget submission that the Irish Wheelchair Association submitted for this year. One item relates directly to the housing adaptation grant. I just noticed yesterday that the fourth report on the implementation of the national housing strategy for people with disabilities cites expenditure on the grants as €60 million. While that sounds enormous, it actually averaged out at about €6,000 per person. A practical example of that is when the needs of one of our own tenants changed. She had a profound physical disability and applied for the grant because she needed an extra bedroom built onto a small, one bedroom house. After tendering and going out for a number of prices, the cost to complete the extension - an en suite bedroom and a bit of reconfiguration - was €63,000. The maximum grant was €30,000. Fortunately in that case, the person contributed the other €30,000 which luckily came to her at that point in time. That is my understanding. Otherwise, it would not have gone ahead. That is a typical example.

The grant is a figure that somebody set and stood back from. It does not deal with the reality of life, the economy or the increasing costs that have been referred to again and again. It is wonderful for the small adaptations in a house but for more substantial work, there needs to be serious consideration given to it. The flexibility should be given to the local authorities to deal with it. Expenditure is needed and the grant creates savings elsewhere. These adaptations cut back on the requirement for personal assistance if someone has a house that meets their needs. For example, someone could have a ceiling tracking hoist which would mean they would only need one personal assistant, PA, to support them as opposed to two. It is a complex set-up. It is a figures game but somebody has just turned the other way and is not looking at it. How long are we going to continue with expenditure of €60 million on the housing adaptation grant and not build houses that are wheelchair accessible in the first place? A high degree of universal design could allow for simple adaptations over time. If we look at sustainable communities, if we do some long-term planning and design these houses to a degree of specification, over time we will be reducing the requirement for the housing adaptation grant.

I was asked about what Departments come into play. The obvious one is the Department of Health in terms of the funding of PAs and the protocols and all that. The Department of Public Expenditure and Reform holds the purse strings. Everyone needs to talk and realise there are verified costs here so that it is not a battle every time we go back to something. The Department of Transport, Tourism and Sport was referred to earlier. Going back to our pre-budget submission, personal assistants, housing and transport are obvious ones and I am sure there are others we can bring into the loop.

The Senator referred to 1,300 people inappropriately placed in nursing homes. I referred to that earlier. I would be encouraging that the unmet need for housing be recorded in order that we get a full picture. Some local authorities are resisting a call from people to register their housing need to plan for the next five years or whatever, because they have such numbers as they are they do not want it to grow. The Government does not want to see the numbers grow, it wants to see them coming down. There is a lot of need there, including among people in nursing homes. Many others are sleeping on couches or living in family homes with siblings, elderly parents and so on. It is only a snapshot of a bigger number. Going back to the housing design issue, there is room for creativity in terms of the models of housing. There are many models that could lie in between that of a two-bed house with one person living in it with their PA, and that of a nursing home with 50 or 100 bedrooms. For example, we could have two houses sharing a PA room so they can share the one PA at night on whom they can call. There could be three or four houses sharing a PA room. Instead of four separate PAs in four separate locations, or a nursing home, there could be a facility designed and funded and provided with assistive technology, which we have not mentioned today. A short-term outlay would have long-term savings for the Exchequer. There is a lot of creativity that can be brought into that loop to bring people out of nursing homes into set-ups that support them socially, emotionally and physically within a nice environment.

Mick Barry (Cork North Central, Solidarity)
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I have two questions. The first is about decongregation. The 2019 target is not going to be met. What is our guests' take on how that is likely to pan out? Is it a very short delay or is it going to be more significant? What are the implications?

Ms Siobhán Barron:

I am not sure I can be clearer on when decongregation will happen. Certainly there are a number of thousand people yet to be moved into the community. When they talk about decongregation it is looking at residential centres of ten persons or more. They have invested in an accelerated programme for a number of sites and there are a few hundred people from those sites who are yet to be moved out. That had a specific investment programme to support it.

I might come back on the other question about the Departments now as I did not answer it earlier. The Department of Public Expenditure and Reform is critical. The focus in all Government Departments now is on financial sustainability. Universal design provides a financially sustainable approach to housing across the board. The whole area of housing in the community is about the development of the community as a whole, so the Departments with responsibility for community development have a key role. I would include the Department of Children and Youth Affairs in the context of supporting families, what happens in the community and holding units together. There are many Departments with this in their remit. Living in the community, good living arrangements and so on are also relevant. I suspect that many Departments and agencies are involved to some degree. Disability is part of everybody's agenda. On living in the community, having access to a home and what that means even in terms of getting access to employment, for example, having a fixed address, they would all have relevant roles.

Mick Barry (Cork North Central, Solidarity)
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My second question relates to mandatory standards. Are mandatory standards the norm in the European Union or in a majority of EU states? Based on the research that has been done, what is the difference in real terms - in facts and figures, but also in people's lives - between a country with mandatory standards being implemented and the current position here? Could the witnesses give us some insight into that?

Ms Siobhán Barron:

Standards can often be voluntary, whereas regulations are mandatory. There are different approaches to this and there is often a minimum degree of accessibility built into those regulations as well. Standards can push beyond the limits of regulation to a higher standard. We are not seeing universal design at a high level of accessibility being factored into many countries. However, we have been progressing in other areas, particularly in the design of goods, services and products. We have been working with EU standard bodies and the ISO on standards and we are starting to see a buy-in to a universal design focus generally in manufacturing and goods. A standard was launched in recent weeks which promotes and rewards anyone who signs up to a standard on universal design in producing goods and services. We are starting to see support for universal design at international level, which is a helpful opening for adoption at local level. Our role in the Centre for Excellence in Universal Design is to promote the adoption of standards by different bodies, voluntary and non-voluntary, and we engage with that proactively. We often develop practical guidelines to support the implementation of those standards. We have worked with the tourism sector, for example, and have developed a suite of guidelines called Building for Everyone: A Universal Design Approach. We have designed universal design homes. We have also developed a set of guidelines for homes for people with dementia in order that they can continue to live in their own homes. Again, those are voluntary standards.

Mr. Tony Cunningham:

Yes. I acknowledge the standards of the NDA and the different levels there. I also acknowledge the standards and guidelines of occupational therapists and I present the Irish Wheelchair Association's best practice standards. I emphasise, based on 60 years of experience that we are, as Deputy Ó Broin said, a very practical organisation grounded in the experiences of people with disabilities. Our standards are all required in order for someone to live independently, but they are only standards. Part M only allows people to visit houses but not live in them. In practice, that means someone can get into the house where possible, access the downstairs living room and the Part M toilet, which a person in a wheelchair may not fit into depending on the size of the chair. God forbid someone would want to stay in that house or live in it, because Part M does not provide for that. The UK building regulations have different levels of regulation, including wheelchair accessible housing. Standards, as Ms Barron said, are not mandatory, which is the reason they need a complete overhaul. Do we have to wait for that or do we get the Department to fast-track an agreed specification for wheelchair accessible housing, for instance? There is a great deal in place, including the standards, the paperwork and the intent, but the obligation to deliver on them is lacking.

Mick Barry (Cork North Central, Solidarity)
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Does the UK have a high standard?

Mr. Tony Cunningham:

I cannot answer that as I do not know.

Dr. Gerald Craddock:

The standard used in the UK is BS 8300. As others have noted, standards are voluntary but BS 8300 is used in the revised Part M 2018 in the UK, to which Mr. Cunningham referred. That revised Part M refers to three levels of housing: standard, lifetime adaptable and wheelchair. That is compatible with the three levels we have built in to our universal design home guidelines. Our home guidelines would be above both the UK standard and the new Part M in the UK. A standard has been developed and many developers and agencies use the BS 8300 as a reference. However, as learned colleagues have noted, the regulation is the mandatory part. We all agree that needs to be updated and the level currently in place needs to be improved. As Mr. Cunningham has highlighted, it is currently more about visibility, rather than actually living in the homes.

Mr. Tony Cunningham:

Did Deputy Barry ask about the gold standard in the EU or here?

Mick Barry (Cork North Central, Solidarity)
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The UK had been instanced as a jurisdiction with higher standards than here. I was wondering if the UK had the best practice or if other EU countries had gone further.

Mr. Tony Cunningham:

I thought the Deputy referred to the EU.

Dr. Gerald Craddock:

A new standard is being developed in which we are heavily involved. However, it will be 2021 or 2022 before that is agreed. It will address not only housing but buildings in general. The National Standards Authority has a mirror committee as part of the wider consultation with key constituents in Ireland. The Irish Wheelchair Association sits on the committee which examines better, more accessible building, including housing. The European standard is some way down the road.

John Dolan (Independent)
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She is a grand lady.

Mr. Tony Cunningham:

I was referring specifically to wheelchair users as opposed to people with disabilities.

Eoin Ó Broin (Dublin Mid West, Sinn Fein)
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We had a session a couple of weeks back on retrofitting. The Tipperary Energy Agency said that to simplify and improve access to retrofitting funds, there is a blended model of grant aid and long-term low interest Government-backed loans. We are talking about the same set of problems. Although there are grants for private homeowners, they are difficult to access if a person does not have the matching funds. It may be worthwhile, in the context of the report, to look at making the same argument for a blended funding model to make it easier to access adaptation grants coupled with long-term low interest loans where the household does not have the means. We heard mention of a person with €30,000. Perhaps it is something we can work in as a recommendation.

Ms Siobhán Barron:

On the cost relating to a universally designed home, there is only anecdotal evidence so far but we will do a cost-benefit analysis and we hope to have further information within the next 12 months. Sustainability is the added value in that housing and it is not just about physical cost and savings in the context of retrofitting. We are doing much work with the agencies dealing with the environment, including the Sustainable Energy Authority of Ireland, on the matter. Much can be advanced in that way.

Mr. Tony Cunningham:

I thank the committee for affording us the opportunity to come before it. I reiterate our invitation to members to visit people and get first-hand experience.

John Dolan (Independent)
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The Vice Chairman mentioned engagement of people with disabilities at different fora, including committees. He also mentioned Councillor Miriam Murphy, who came back with an enhanced vote, which is good news. That is important. When the transport report was written, it was published with evidence and quotes from people with disabilities. They were lived experiences. Would it be possible to have a session with some people with disabilities some day? I know the logistics involved with setting up committee meetings but they could set out the impact of these issues. We could have the testimony of a parent or something like that. It would really enrich the report and drive home the point so well made by our guests.

The National Disability Authority indicated that we must be ready to make the first report to the UN disability committee next year. The report we will compile will be really important in that regard because it will demonstrate that the committee takes seriously the UN Convention on the Rights of Persons with Disabilities and its articles relating to housing and community.

Ms Siobhán Barron:

On retrofitting, the UK has carried out a study in respect of its housing stock and discovered that 50% of houses are not adaptable. It would cost over £15,000 each to upgrade half of the remaining 50%. That is something interesting to add to the discussion.