Michael Moynihan (Cork North West, Fianna Fail)
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Apologies have been received from Senators O'Loughlin and Seery Kearney. The purpose of today's meeting is to discuss aligning disability services with the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, future systems and innovation, and service providers. On behalf of the committee, I welcome the following: Mr. Peter Broadhead of the Australian National Disability Insurance Scheme; Dr. Simon Walsh and Ms Fiona Walsh; Ms Louise Loughlin and Ms Joanne Condon from the National Advocacy Service for People with Disabilities; and Ms Aoife O'Toole.

I must remind members that they are only allowed to participate in the meeting if they are within the confines of Leinster House. In this regard, if members are joining the meeting remotely, I ask them to confirm they are on the grounds of Leinster House before they make a contribution to the meeting. For anybody who is watching the meeting online, the witnesses are joining us remotely, not just from Ireland but from across the world, and if there are any unprecedented circumstances, I ask everybody to bear with us should any technical issues arise.

Before we commence formal proceedings, witnesses are directed that only evidence connected with the subject matter of these proceedings is to be given and they are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person, persons or entity by name or in such a way as to make him, her or it identifiable. I advise witnesses giving evidence from a location outside the parliamentary precincts to note that constitutional protections afforded to witnesses attending to give evidence before the committee may not extend to them. No clear guidance can be given on that issue and, of course, persons giving evidence from another jurisdiction should be mindful of the domestic statutory regime. If witnesses are directed by the committee to cease giving evidence on a particular matter, they should respect that direction.

I remind members of the long-standing parliamentary practice that they should not to comment on, criticise or make charges against a person or persons outside the Houses in such a way as to make him or her identifiable.

I call on Mr. Broadhead to make his opening remarks.

Mr. Peter Broadhead:

I thank the committee for allowing me to speak on how the Australian Government has changed the way specialist disability support is provided in Australia and developed new models that are in accord with our obligations under the United Nations Convention on the Rights of Persons with Disabilities. Australia has a population of 25.7 million people of whom 4.4 million have some form of disability, ranging from mild to profound. The Australian Bureau of Statistics estimates in 2018 about 400,000 people aged zero to 64 had a severe or profound disability.

The Australian Government’s approach to addressing disability is framed through Australia’s Disability Strategy 2021-2031, a ten-year plan launched last Friday on the International Day of People with Disability. The strategy addresses the things people with disability said need to improve in order to achieve the vision for an inclusive Australian society that ensures people with disability can fulfil their potential as equal members of the community.

The convention was a key driver in the development of the strategyand the preceding National Disability Strategy 2010-2020. The strategy plays an important role in protecting, promoting and fulfilling the human rights of people with disability in Australia. It is Australia’s overarching policy framework for all levels of government to improve the lives of people with disability because, of course, we are a federation. The new strategy was developed by Australian, state, territory and local governments through more than two years of extensive engagement with people with disability, their families, carers and representatives. In delivering on what people with disability have said they need, the strategy will play an important role in protecting, promoting and realising the human rights of people with disability. This aligns with a number of commitments under the convention. It includes an intensive focus to drive practical changes through the development and implementation of targeted action plans, under which all governments in the Australian federation have committed to specific actions. The first five focus on employment, community attitudes, early childhood, safety and emergency management.

Within the strategy’s framework sits the centrepiece of Australia’s support for people with significant and permanent disability, the national disability insurance scheme, NDIS. The NDIS is a tax-funded social insurance scheme that delivers funding to eligible persons with significant and permanent disabilities, known as participants, to purchase the disability supports they need. It is a major change to the way people with significant disability are supported in Australia. At its core, the NDIS takes an individualised and rights-based approach to disability support, empowering eligible participants to exercise choice and control in accessing support. It provides access to individualised funding to help participants realise their aspirations and to participate in the social and economic life of the community. The NDIS is not means tested and provides its participants with funding for supports to help them live an ordinary life. The NDIS does not provide income support, which for those who require it is provided though a separate tax-funded social security system.

Eligibility for the NDIS is based on being under the age of 65 when applying, being a citizen or permanent resident and whether a person with disability has one or more impairments that are significant and permanent, or are likely to be permanent. Eligibility is not based on a person’s diagnosis or specific medical details, rather the scheme focuses on how a person’s functional capacity to undertake the activities of daily living is affected by their disability.

The NDIS is not limited to supporting individuals with a physical disability. It also provides support to eligible people with intellectual, sensory, cognitive and psychosocial impairments. Early intervention supports are also provided for eligible people with disability and children with significant developmental delay. The design of NDIS eligibility recognises that disability results from the interaction between persons with impairments and the environmental barriers that hinder their participation in society, which is also a key component of the convention. The NDIS has grown rapidly and is close to reaching 500,000 active participants, having grown from around 30,000 participants in 2016. As best we can tell, half of participants are receiving specialised disability supports for the first time.

Prior to the NDIS, combined Commonwealth, state and territory funding for services to support people with disability was around AUS$7.9 billion in 2019-20, or about €4.9 billion. The 2021-22 Commonwealth budget estimates that AUS$26.5 billion, or €16.6 billion, will be spent on participant supports this financial year, increasing to over AUS$31 billion, or €19.5 billion, in 2024-25.

Importantly, the level of funding attributed to participants for their supports is individualised according to each person’s reasonable and necessary needs. There is no minimum or maximum cap on the level of funding a participant can receive. Rather, a participant receives a NDIS plan and associated funding developed through assessment of what supports are reasonable and necessary given a person’s level of functional capacity and circumstances, and his or her current access to formal and informal supports. Included in each person’s plan is the person's statement of his or her goals. It is not told to them by anybody else. This individualised approach is central to the scheme and has been aligned with the overlaying themes of the CRPD, which are to respect the inherent dignity and individual autonomy of people with disability and their need to participate fully and effectively in society.

Examples of the supports included in plans which people can purchase with the funds provided to them are: therapy; home and vehicle modifications; assistive technology devices and equipment; assistance with household tasks, personal care and transport; and assistance for family and carers. Funds can be included for capacity building supports and supports for community participation.

The articles of the convention were built into the design of the scheme from the outset. The first object of the National Disability Insurance Scheme Act 2013, a Commonwealth Act, is to, in conjunction with other laws, give effect to the convention. The objects and principles also include giving persons with a disability choice and control over the care and support they receive, protect and prevent them from experiencing harm arising from unsafe supports, promote the provision of high quality and innovative supports, and raise community awareness of the issues that affect social and economic participation of people with a disability.

A relevant example of a principle in the Act is where it states that people with a disability should be supported to exercise choice, including in relation to taking reasonable risks, in the pursuit of their goals and the planning and delivery of their supports. The general principles of the convention reflect the need to respect the inherent dignity and individual autonomy of people with a disability as well as their rights to participate fully and effectively and be included in society.

The NDIS sets out to support people with a disability to exercise the same rights as other members of Australian society to realise their potential for physical, social, emotional and intellectual development, to live independently and to be included in the community as fully participating citizens. The NDIS provides Australians who have a significant and permanent disability with the reasonable and necessary supports they need to live an ordinary life. It is the realisation of an insurance scheme that takes a lifetime approach, investing in people with disability early to improve their outcomes later in life.

I am happy to take any questions the joint committee may have on Australia’s disability programmes and its commitment to the rights of people with disability, and to answer them as best I can. I thank the committee for its time and for letting me speak today.

Dr. Simon Walsh:

It is a sunny summer day. Families are getting ready for a day at the beach. They pack a picnic, sandwiches, juice and treats. We look out the bedroom window at the neighbours packing their cars with parasols and buckets and spades. Happy children are strapped into the car. Zoë has not slept for 72 hours. She is crying constantly. She is six years old and non-verbal so we do not know whether it is hunger, thirst, pain or tiredness. It could be multiple other things but these are the things we address first. We flush a tube going into her stomach with water and pain medication and we try to feed her. We give her daily anti-epileptic medication and we carry her around - she weighs 18 kg - because she gets distraught if we put her down. We apologise to our eight year old daughter that we cannot do the day trip we had planned because Zoë did not sleep, and one or other of us has been up with her overnight, again. Thankfully we do not need a trip to the hospital. We have been through this before, all too frequently. I am a consultant in emergency medicine so we do not have the worries of other parents about whether this could be appendicitis or another medical emergency.

We have pleaded for overnight help from the HSE but we do not meet the requirements. We have figured out over the years that a drive might calm her. We take turns driving around County Cork to give the other parent a break from the constant background noise. Should we use this time to clean the house, because we have not had an opportunity for three days, or should we try to spend time with the other two kids? I am not working today so we have two pairs of hands. When I am working I may be gone for up to 16 hours or even overnight. Our families live in different counties. They are helpful but they have their own lives.

Zoë has a severe disability due to a condition called CDKL5 deficiency disorder. There are seven people with her condition in Ireland, all girls. She only learned to walk one year ago. She does not talk. She has epilepsy and she requires medication through a tube into her stomach twice a day. We have had to pay privately for physiotherapy, occupational therapy, speech and language therapy and carers because none of these services is available to us publicly in Cork. This is because of a non-functional system. We have had to pay for equipment too. Nothing has been funded in Cork.

We moved from Australia to Galway three and a half years ago so have had the benefit of experiencing disability services in three places. Australia was in the process of introducing the national disability insurance scheme Mr. Broadhead spoke about. Through this scheme funding is provided to families to try to reduce costs in the future by achieving a child's potential with early, personalised intervention, guided by the parents and the therapists. We are dual citizens of Ireland and Australia and could have stayed in Australia but with Zoë being unable to make 25-hour flights in the future and the thought of never seeing our elderly parents again we made the hard decision to move back to Ireland where we knew the health system was not as mature. We spoke to a paediatrician in Galway who advised us there were better services there than in other regions in Ireland and we made the decision to come back.

Galway had early intervention, including regular physiotherapy, hydrotherapy, occupational therapy, speech and language therapy and even respite. Despite all this, we still felt that family support was closer in Cork and after two years in Galway we reluctantly made the move, during the pandemic, with a third child on the way. A friend in Australia whose child has the same condition gets two hours of occupational therapy, one hour of physiotherapy, one hour of speech therapy and one hour of vision therapy per week plus every three months gets an intensive therapy period of three weeks which involves three hours per day, Monday to Friday. This child also gets a carer for nine hours per week and there is funding for equipment.

The financial burden of having a child like Zoë has a great impact on families. Fiona is not entitled to the carer's allowance because it is means tested, so despite being a full-time carer she is not entitled to an income. She is a radiographer by profession but is unable to return to the workforce. If therapy was available in schools, she would not have to spend time driving the family around to appointments.

We knew after researching that the services in Cork would not be as good as in Galway. Covid-19 has obviously had an impact but what we have found in Cork is a completely underresourced and underfunded system from the perspective of both health and special education. We regularly think of packing up and moving back to Australia. This is not acceptable. Zoë should have the same opportunities as all other Irish children to reach her potential and we should have the opportunity to live as normal a life as we can. The current system does not allow Zoë or children like her to take their place in the world by developing their skills and abilities.

Ms Louise Loughlin:

I thank the Chair and committee members. The National Advocacy Service for People with Disabilities provides representative advocacy to adults with disabilities throughout Ireland. We ensure that their will and preferences are heard in decisions that affect their lives. In 2020 we provided more than 3,700 advocacy interventions. We host the patient advocacy service, which was commissioned by the Department of Health. It provides independent, free and confidential advocacy for people who wish to make complaints about patient safety incidents in HSE-funded public acute hospitals or nursing homes. This will play an integral role in protecting the rights of people in receipt of healthcare into the future.

Advocacy services are vital to the future of disability service provision. Advocacy ensures that a person's will and preferences are heard. Advocacy acknowledges the lived experiences of people with disabilities and works to uphold people’s rights. Covid-19 coincided with a notable drop in inquiries to our services from mid-February 2020 to May 2020. During pandemics and their associated restrictions there is a greater risk of human rights violations. Access to advocacy services must continue to be promoted in future service design to safeguard human rights.

The disability capacity review published earlier this year highlighted that the demographics of our population are changing. By 2032 there will be more people in Ireland living with disabilities. We welcome the recent investments in disability services in the national budget. However, as Dr. Walsh has highlighted, much of this is not focused on the needs of people with disabilities. A total of 65% of this funding went to residential care. More funding should be invested in community-based services. An issue we have recently identified is the commissioning of residential placements for people far away from their communities and families. This is linked to the lack of suitable housing in urban areas due to the ongoing housing crisis.

More investment in community-based services would also facilitate the acceleration of decongregation, which is the Government's policy to close residential services for ten or more people. We strongly support the commitment in the programme for government to decongregation. We also recognise the various State initiatives in place to support it. Ongoing decongregation is vital to align future service provision with Article 19 of the UNCRPD. Its completion will improve the lives of people living in unsuitable placements.

HIQA’s 2020 annual report stated that of the 9,166 residential places registered by the end of 2020, 31%, or 2,841 places, continued to be located in congregated settings. In 2020, only 75 people moved out of congregated settings. We have worked with many people who have moved to community-based living and have seen its positive impact. However, if the current rate of decongregation continues it could take up to 20 years for all those living in congregated settings to move to the community.

The Assisted Decision Making (Capacity) Act 2015, when fully commenced, will bring a legislative underpinning to the rights of people with disabilities to have their will and preference heard. It will also help to align Irish disability services with Article 12 of the UNCRPD, on supporting capacity and decision-making. Based on our experience, a focus should be placed on eradicating the practice of next-of-kin consent. There is no legal basis for next-of-kin decision-making, except under legal instruments such as ward of court or enduring power of attorney. Unfortunately, we continue to encounter poor practice regarding consent matters in healthcare settings, social care services and financial institutions. This severely impacts on a person's fundamental right to make decisions for themselves. The HSE human rights and equality office has carried out valuable work on this issue, and this work should continue to address the issue in all sectors.

The role of nursing homes in disability service provision is a barrier to the alignment of disability services in Ireland to the UNCRPD. People under the age of 65 being cared for in nursing homes is particularly serious. We provide advocacy to residents in almost 21% of private and 13% of public nursing homes. A total of 90% of people living in nursing homes whom we support are under the age of 65. As of 30 June 2020, 1,320 people under 65 were living in nursing homes supported by the nursing home support scheme. We welcome the HSE's ongoing pilots that are moving people outside of nursing homes and the announcement of more funding for this project in 2022. However, only 18 placements have been funded this year. We request this committee to support an increase in funding to expedite a swifter relocation of people under 65 out of nursing homes and into more suitable community-based placements.

The Ombudsman's Wasted Lives: Time for a Better Future for Younger People in Nursing Homes report, published earlier this year, examined the issue. It highlighted that the needs of people under 65 are often quite different from those of older people. It recommended ensuring informed consent is obtained from those entering nursing homes, in line with the HSE's consent policy. We recently published a report that illustrated the experiences of people living in nursing homes during the pandemic. We found many issues highlighted in the Ombudsman’s report had been compounded by the pandemic and the associated restrictions.

Last year, a nursing home expert panel report that was published acknowledged the central role advocacy plays in combating powerlessness and loneliness in the face of these issues. Residents' rights, particularly concerning dignity, freedom, choice and equality, must be respected. They need to be at the forefront of policy development and advocacy is a critical component of this. We are also a strong supporter of personalised budgets, which are an effective method of providing flexible funding for a person's care and help address some of the issues Dr. Walsh and Ms Walsh highlighted. They offer people greater independence to choose services that suit their needs. We look forward to seeing the outcome of the HSE's current pilot programmes with this model. We also support HIQA's ongoing work in the regulation of home supports. Regulation should be extended to personal assistance services in order that people will receive the supports they need at the time they need them.

Personal finances and banking constitute another important issue in the future of disability service provision. Equality legislation and the Central Bank code of practice offer people certain rights in this area. Despite this, however, we work with many people who do not have full control over their money. Better access to banking supports is essential to ensuring people with disabilities can have control over their finances.

We thank all the members of the committee for their commitment to implementing the UNCRPD and to disability matters. We thank them for their invitation and welcome any further questions.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Ms Loughlin and invite Ms O'Toole to make her opening statement.

Ms Aoife O'Toole:

I thank members for the invitation. It is very encouraging to see the work of this committee, which demonstrates a new approach for governments throughout the world in monitoring the implementation of the UNCRPD.

I have worked in disability services in Ireland and Australia for more than 30 years. The question I asked when I began, and still ask now, is why people's lives are so different just because they have a disability. The UNCRPD exists because people with a disability are still experiencing inequality and discrimination. Today, in 2021, there is still a prevailing narrative of people with a disability as objects of pity, objects of charity and as a burden to their families and the State. The Taoiseach stated in the Dáil in October 2020 that the system needs to change and reform. The HSE has also committed to the reform of disability services in its 2021-2024 corporate plan. From my perspective, reform is not enough; we need a transformation of the system and within society.

Over the past two years, I have been researching systems change, systems thinking, social innovation and the use of technology to drive transformation. I was really curious about the approaches other sectors use to transform successfully and achieve value for all. This was a fascinating journey and it led me to ask what if we could make more use of the tools and technologies that work in other industries to transform the disability sector and, in doing so, improve the lives of people.

I will share three matters that can help in this transformation. The first is a change of mindset. All lives matter. Just like the Black Lives Matter movement, which addresses the unconscious bias against and inequality experienced by black people, we need a movement to do the same in Irish society in the context of disability. It is not a person's disability that limits his or her life but rather the cumulative impact of how society sees, treats, devalues and discriminates against people.

Transformation begins when we change the narrative and see people as whole, just as they are. The reform of disability services in Australia, which Mr. Broadhead mentioned, is very instructive for us. It was propelled by the actions of people with a disability and their families in the “Every Australian Counts” campaign. This campaign fought for the introduction of the national disability insurance scheme, NDIS, and won. It was a call to action that gave all Australians a reason to care about disability through the sharing of stories on the impact of living with a disability. In line with Articles 3, 4 and 5 of the UNCRPD, I urge the committee to use its influence to invest in a social movement campaign that shifts mindsets and makes equality the new normal and not the exception.

Second, we cannot support people to lead a good life if they are not part of creating their own solutions. Article 4.3 of the UNCRPD is such a wonderful asset to guide us in the reform process. Partnering with people with a disability and their families will drive innovative solutions and shared value. The demonstration project on personalised budgets, which Ms Loughlin mentioned, is one of the ways the system can learn how to do this. People with a disability and their families, in partnership with services and community, are designing the supports that work best for them. They are doing this with the support of small agencies such as PossibilitiesPlus and the AT Network. The demonstration project and the research into the resource allocation tools place Ireland in a position to have the potential to transform, similar to what was outlined in regard to the NDIS. Individualised funding is already happening in Ireland, and there are wonderful, compelling examples of co-creation, collaboration and good lives being realised by individuals and their families throughout the country. I suggest we invest more in these opportunities. They remain very fragile.

What is also exciting and may not be widely known is that a new ecosystem is emerging in Ireland, where social enterprises, networks, entrepreneurs, coaches, mentors and new alliances have formed. These entities are partnering with people with a disability and their families and achieving the kinds of change, support and outcomes people want. These initiatives include the Inclusive Living Network; Positive Pathways and the In Conversation series; Blossom Ireland; In Charge; Humankind Coaching; Future Solutions; and Codie: Communities Driving Ireland, to name a few. Like many start-ups, they have the potential to scale, solve problems and open the marketplace, but only if they are invested in.

The third area concerns how digitisation can positively support the transformation of disability services. The pandemic has altered life as we know it and digitisation is transforming so many aspects of our lives, from how we shop to how we connect and work. A deliberately different and innovative approach to transformation is needed, and there are many ways digitisation can make people's lives better. For example, it is helping many companies throughout the world to be more efficient and effective by creating digital end-to-end processes and automated workflows, such as rosters, timesheets, payroll, purchases and payments. Another example is learning platforms, where people with a disability and their families and staff can build their confidence and capacity in new approaches.

A third example of digitalisation are online platforms that can help with the challenges in recruiting and retaining staff, which is highly problematic at the moment. These platforms enable people with a disability and support workers to connect based on needs, interests and location, and offer choice of who to work with, which is a win-win for all. The platforms also have the potential to connect people with other supports, such as community co-ordinators, mentors and natural supports in the community. They work successfully in other countries and are starting to emerge in Ireland.

I urge the committee to consider three things. First, investing in a social movement campaign that shifts mindsets and can bring about the societal change needed to achieve equality and non-discrimination. Second, investing in how we grow and scale approaches in designing and delivering services in partnership with people and their families. Third, investing in the digital transformation of disability services in a way that keeps relationships at the heart of what we do.

I believe we are on the cusp of this transformation, especially with the transfer of disability out of the Department of Health, the ratification of the UNCRPD and the knowledge and expertise that exists in Ireland when we harness the benefits of partnering with people and their families. If we make the right investments now, we have a pretty good chance of achieving equality. Can members imagine a time when people with a disability can be where they want to be in their day, their life and their community? I thank the committee for the opportunity to address it.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank all the witnesses for a very thoughtful presentation. We will now go to the members for questions and answers and comments.

Violet-Anne Wynne (Clare, Sinn Fein)
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I thank the witnesses for their contributions. It has been interesting. This has been a big week in Ireland with the publication of the Indecon report, which is long overdue but is a comprehensive document of 200 pages looking at the nitty-gritty of the extra costs incurred by disabled people. Most of the speakers referred to the cost of disability and it is something the committee is extremely focused on. Creative solutions are welcome. That is why it was a pleasure to hear from Mr. Broadhead on the comparative analysis between what is happening there and what is happening here. I was interested to hear Australia is responding to the challenges posed by implementing the UNCRPD and about the whole-of-system response he referred to in mechanisms such as the NDIS.

I have questions for Ms O'Toole and Mr. Broadhead first. How difficult was it to get to a place where the Government was in a position to introduce the NDIS? What social, economic and political factors provided the impetus to introduce something so progressive? Was it the UNCRPD?

The NDIS is across impairment provision. My question concerns equality between disabilities. Based on the witnesses' experience and critical observation, is there any subgroup or people with a specific type of impairment who have struggled to access or benefit from the scheme to the same extent as others?

On the differentiation between the disability representative organisations and disabled people's organisations, distinguishing between the two of them in terms of consultation, funding, etc. has been an ongoing challenge in this State.

Decentralised funding comes up against a lot of resistance to the idea that an extra responsibility or burden would fall on the disabled person. Will the witnesses speak about how that was overcome in the Australian context?

I thank Ms Walsh and Dr. Walsh for their honest and open statement. It is glaring and stark to hear the differences they have experienced in terms of access to services and supports between Galway and Cork and between Ireland and Australia. Even more striking is detail of how much more support Zoë's peer in Australia received. It is disappointing to hear that is the case in Ireland. They mentioned precise access to support provision. That has been pretty non-existent since they relocated to Cork. I wanted to come back on that and ask how that has impacted them as a family, in terms of going forward, hope and all that kind of stuff that comes with dealing with despair on a daily basis.

Mr. Peter Broadhead:

Deputy Wynne will have to remind me of a couple of her questions because I did not take notes quickly enough.

The Deputy asked first about how the change happened at the level of Government. That is difficult to describe but it was driven by the UN convention. In 2007, we had a Government that signed up to the UN convention and it was ratified in 2008. The carry-through of that into the scheme involves a definite relationship. As a federation, previously the disability services people mostly think of, including the kind of support for people Dr. and Ms Walsh mentioned, was provided by our state governments and some additional funding was provided by our federal Government to those state governments to do that. It was done by funding providers on a block-funding basis, giving them a grant and so on to meet their costs. That was the principal approach.

Somebody said there was a deal of organisation by people with disabilities and that is true. It was our civil society and non-governmental organisations who mounted a campaign but it is also true that at the time there was a wish to do something more than had been done in the past. The Act creating the scheme was passed in 2013, following the 2008 ratification. The scheme was set up as a series of trials. There were seven trials around the country to see how this different approach would work. That was it for the first three years. From 2013 to 2016, it operated as a series of islands of doing things differently in different parts of the country. In 2016, it rolled into a period of transition. By this time, there had been a change in federal Government. I have not kept track of all the state territory governments coming and going. The Act was passed with multiparty support so when the new Government came in, there was a commitment to carry on with the scheme. We went through this period of transition from a series of trials to progressively rolling it out across the country, which meant transferring people out of the old arrangements into the new.

I do not have the time and neither does the committee to go through the whole process but it was not straightforward and in some ways it is not over yet, despite the fact we are in 2021, eight years later. The ambition was to do it in such a way that the thing was stood up in full by 2019 or 2020 but it turned out to take a bit longer.

The federal Government had commissioned our Productivity Commission, which is a sort of independent government entity that provides advice on economic and social issues when asked to do so by the Government. That commission did a report which led to the creation of the scheme. It was invited to do so. It gets its terms of reference from our treasurer. It was asked to do an investigation into disability care in Australia and that report set out the shape of arrangements that were then introduced by the Act. That report came out in 2011 and can be found on the Productivity Commission's website. There was an organised push and an acceptance by the Government of the day of the need to do something. There was a commissioning of a report. That was handed down in 2011 and led to the Act in 2013 and on to the scheme.

One of the questions concerned inequality by disability type, as I would characterise it. There is unevenness in the way the scheme is rolled out because everybody is different. As we moved from the previous system, our eight states and territories did not do things exactly the same and did not take the same approach to bringing people in and the level of change required. There was concern in the early years of the scheme that people with psychosocial disabilities were struggling to get in. There was an anticipated level of participation that was not met. It began at 8% and is now at 11%. Perhaps the position in our country is different from this country. Groups we particularly struggle to reach, engage and include our First Nations people such as people from Aboriginal and Torres Strait Island backgrounds. Most of them live in our cities but a disproportionate number live in remote areas. Simon and Fiona, who lived in Alice Springs, will be aware of this. Reaching those people has been a challenge for us. It is a challenge for us in a range of ways outside disability but also for members of that community who have disabilities - not by disability type but for other reasons.

We have had much larger involvement of people with autism than we expected. That was not anticipated, in particular, the numbers of children with autism who are now participating in the scheme. The others might take a different view and, of course, different groups advocating for people with different types of disabilities may have a view but, overall, I would say the scheme is fairly inclusive across the board because it only focuses on functional impairment. It does not distinguish by diagnosis.

The one area that is contentious is the fact that due to the way the scheme was developed, the assumption was made that people aged 65 and over would go towards our age care system rather than the disability system. For this reason, people must be under 65 to apply for the scheme. A person who ages in the scheme can remain in it or choose to go to our age care system at some point but a person over 65 cannot get into the scheme. There has been a fair bit of pressure on that.

Ms Aoife O'Toole:

I am happy to address Deputy Wynne's questions.

Michael Moynihan (Cork North West, Fianna Fail)
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We will come back to Mr. Broadhead at a later stage.

Ms Fiona Walsh:

The Deputy asked about access to support provision. Covid-19 has obviously had a big impact on that. Our daughter is in a special needs school in Cork. We have seen a physiotherapist publicly twice in a year and a half. On both occasions, that was just to assess her, make sure her back was still in alignment and determine whether she needed shoes or specialised equipment. We saw an occupational therapist. When our daughter joined the school, I highlighted that she did not have correct seating, sent seven or eight emails forward and backwards and was told that they would get to her at some stage. That stage came a day after she fell out of the seating she had been given, which had been taken out of a storeroom in the school and was not appropriate for her to use. The first time we saw an occupational therapist was after an incident. An occupational therapist has visited her once this year - also in the school. We have not had any public speech and language therapy for a year and a half since we came to Cork.

In contrast, when she was in an early intervention preschool in Galway, there was a physiotherapist, speech and language therapist and occupational therapist in the grounds of the school. They would be there a couple of days a week. We had plans where we worked with her. In contrast to here, she was doing five days a week there. I am not sure how many hours it was per day.

Dr. Simon Walsh:

It was 20 per week.

Ms Fiona Walsh:

The reason we put off moving to Cork was that we were told Zoe would have two hours early intervention preschool here. Since then, the preschool in question has shut down. There is no early intervention preschool for a child like Zoe in Cork. There is no support for us in the public system. We have not seen it anyway. I have just gone through the process of completing her individualised family service plan. We were told to pick three areas we would like to work on. This is a child who can walk very short distances, cannot talk and spends hours crying because she is frustrated and cannot communicate. She has issues with her diet and medical issues. When it comes to picking three areas, where do you start?

We pay for therapy ourselves. We are very fortunate to be in a position to do that so we have to take her out of school several days a week to drive her to physiotherapy and occupational therapy, which we do in the house. We had been doing speech and language therapy online. That was not really appropriate for Zoe because she does not look at a screen. She has a condition called cortical visual impairment, CVI, so she is effectively blind. Looking at a screen does not work. The cost of that every week is €80 for physiotherapy and €80 for occupational therapy. When we were doing the speech and language therapy, that cost was €130. We will be doing intensive therapy next September with a group that comes over from the NAPA Center in Boston and that will cost €10,000. We have travelled to Boston, which probably cost us €15,000 between accommodation, the therapy and flights. We are able to do that. We are very lucky.

I look at other children going into Zoe's school in wheelchairs and I think they should not be in wheelchairs. They could be walking, they could be toilet trained and they could be self-feeding. Zoe does not use a toilet at the moment. If she had an individual SNA, we might be able to work towards that but she does not have one. They have too many children to look after. Walking is such a basic right for children. One of the major things Zoe can do now is take a couple of steps around our house. When she is hungry, she will walk to the kitchen. That is her communication. I feel that the job of an occupational therapist now is to decide which wheelchair to put a child in, rather than to work on helping Zoe feed or on her sensory issues or do timed toileting with her. It seems more like facilitating the child to be disabled rather than helping the child to progress as much as he or she can.

The Deputy asked about hope. I do not have much hope with the current system. Hopefully, we will get to 90 years old and Zoe will still be living with us. If the system remains as it is, we will be changing a 40-year-old's nappies. She will not be able to tell us when she is hungry. She will be crying because she is tired and we will not know whether it is tiredness. We will be going for drives with her to try to relax her.

Regarding speech and language therapy in the school, we have worked with companies from England and tried assistive technology with her but that needs to be done every day in school. They need more staff to be able to do that. They need the specialist speech and language therapist within that setting to be able to do that but none is provided. Some day, down the track, we will not be able to do this. What happens to Zoe then? I do not have hope. I do not want my other children to have to look after Zoe when she is older. I want her to be as independent as she can be. I want her to be able to walk around the house, pick up a spoon or tell me she is hungry. I want her to be able to go to bed when she wants to go to bed.

Dr. Simon Walsh:

A lot of Irish therapists living in Australia, the US and the UK are extremely specialised and want to move home but the system is too immature for them to even consider moving home. It is the same for the medical profession. The system in Australia and the US is so far advanced compared with what we have here. The reason many consultants who have gone overseas to do fellowships will not come back is that they would not get the same job satisfaction here.

If we can make our schools and our facilities for therapists more attractive, more people will come home. They are highly trained and want to come home.

Ms Aoife O'Toole:

I acknowledge what Ms Walsh spoke about in responding to Deputy Wynne's question on what some of the drivers were to put this scheme in place and how the disabled people's organisations, DPOs, work together. Three elements underpinned the reform in Australia. Those were public support, political will and bureaucratic backing. Regarding public support, in every Australian campaign that was run, families told their stories just like Ms Walsh did, but they told them in a way that resonated with the Australian population. The public were not aware of the lived reality and they were quite shocked by it to the extent that 80% of the population voted for a 0.5% increase in their taxes in order that a system could be developed that was fair and equitable. The other feature that underpinned the reform was that it began with honesty. The productivity commission's report that Mr. Broadhead mentioned stated the system was broken, fragmented, unfair, crisis-driven, underfunded and inadequate. There was agreement and unity about the system being problematic but we are not seeing that in Ireland. That is very important. In terms of the DPOs and the disability organisations working together, they were quite fractured just as they are in Ireland, but they developed an inclusive and collective leadership and created an alliance. The agencies came together and worked on what they were in agreement with, which was that the system was broken, it needed to change, they needed to speak with one voice and they needed to work together to do that.

Michael Moynihan (Cork North West, Fianna Fail)
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Does Deputy Wynne want to comment further on an issue she raised with Mr. Broadhead?

Violet-Anne Wynne (Clare, Sinn Fein)
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I am conscious of the time I have used so far, and if there is time at the end, I will come back to it.

Michael Moynihan (Cork North West, Fianna Fail)
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We can come back to it. The next speaker is Deputy Canney.

Seán Canney (Galway East, Independent)
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I apologise for being late in joining the meeting. I was tied up at another meeting but I got here for the first round of questions. I had read the presentations and made some notes. We are at a stage here where our system is fractured. It is under-resourced and it is crisis-only solutions we try to bring forward. The system is fragmented.

I listened to what Dr. Walsh and Ms Walsh said. In terms of getting the whole process up and running in a proper way, reference was made to public support, political will and overcoming the bureaucracy involved when a system is being publicly funded. Our committee is one avenue by which we can inform the public in order that they can support what we are trying to do.

I have a question for whoever would like to answer it or give an opinion on it. The Indecon report published this week probably sets out much of what we all think about the sector, but it brought it together in terms of the cost involved with respect to the disability sector.

Ms Walsh spoke about the services she could get in Galway that were not available in Cork. Other services are probably available in Cork and not available in Galway. We do not seem to have a level playing field and ours is a small island. We have different levels of services in different places.

We are trying to move responsibility for the disability sector from the Department of Health to the Department of Children, Equality, Disability, Integration and Youth, and that in itself involves bureaucratic trauma. I feel frustrated sometimes listening to people tell stories of their lived experience and put into a few sentences what needs to be done. As politicians we need to stop talking about the issues and put the processes in place to change things.

To return to the assets we have in terms of people with expertise who are not here but in other countries around the world, I would have experienced that on a professionally and have thought if only we could get these people home and how we could bring them home. We need to get to a stage where we can give these experts confidence they would be coming back to a system in which they could enjoy working and have a sense of fulfilment in their job rather than having to deal with issues on a crisis basis. Mr. Broadhead might give us some insight on that. Is it all about money at the end of the day? I have been long-winded in making these points and the witnesses might have some thoughts on them.

I feel frustrated when constituents call to my clinics with issues concerning their children. They are caught like a rabbit in the headlights in that they do not know where to turn and there is no clear pathway for them. They fight for something and get an appointment and that is that. Then they have to start fighting again the next day for the next step. There does not seem to be a co-ordinated pattern as to how parents can go down a pathway to improve their child's life. That is a fundamental issue. We can talk politically about ratifying treaties, and all of that is great. People will say money will be targeted at this, that and the other, but we do not seem to be getting it to where it is needed or to be getting the required expertise in to deal with the children.

Mr. Broadhead and any of the other witnesses who wish to contribute might comment on those points.

Mr. Peter Broadhead:

It is hard for me to comment on what might work in the situation here but I can talk about the commitment that was made. The report that was done in 2011 made clear the scope of people who were expected to be supported through a scheme, as proposed, and made clear what it expected the cost of that to be. It involved taking all the money that was previously spent in the area and adding more on top of that. That was part of the commitment. Arguments were put forward in that report about the economic benefits down the track and so on. It is fair to say the scheme that was stood up through the Act is not identical to the scheme that was recommended in the 2011 report, but there was a recognition all along that it would cost more to do what was proposed than had been spent in the past, which is proving to be true.

We have a Medicare levy, which is an identified tax. It is not hypothecated but it is identified. It has a label on it that was introduced when we moved to publicly funding some parts of our health system. That was introduced to meet the additional cost of that. That was increased, as was mentioned. The revenue from that is not sufficient to meet the additional cost of the scheme. The additional cost goes well beyond that. A decision was made by the government of the day that in the end that would be funded primarily out of general taxation rather than out of an identified levy, although that extra increase is still there and is still distributed back to the state governments that contribute. Approximately AU$11 billion to AU$€12 billion is allocated to the scheme by our state governments. It is not purely funded by the federal government, rather the balance is funded by the federal government. That was a decision taken at the time.

Reference was made to public support, the idea that the scheme should support people with disabilities and that this was the right thing to do. Various groups take surveys from time to time and there is still clear support for it. There are still many teething problems in the scheme and there are various views on the rights and wrongs of it and if it is doing everything as it should be done. We are not past all that and probably never will be but, nevertheless, the major features of the scheme are understood, accepted and in place.

Ms Louise Loughlin:

I thank the Deputy for the question about what we need to do. I suppose what we would consider from an advocacy prospective when we look across the range of issues that emerge for us is this is not only about healthcare or social care. The costs for families and people with disabilities go much wider. Ms Fiona Walsh spoke eloquently there about the educational situation. As well as the impact now for children in the system, there is a future impact in terms of what they are not being provided with. Another issue that comes up for us is housing and accommodation and we know from the disability capacity review what the increased demand will be. It is about money but it is also about where that money is going and how that is joined up. It is probably more about trying to pull the threads of that together into something more coherent and saying that we need this across different Departments. There is probably a need for political drive to bring that around. It probably also is about going back to the principles of Sláintecare and about devolving decision-making to communities and looking at it that way rather than having centralised decision-making around these types of issues.

Those are the issues. Where there was more a focus there at political level, it might get to this Holy Grail we are all after more quickly.

Ms Aoife O'Toole:

One of the other things that underpinned what happened in Australia was acknowledgement that government alone is not fully responsible to support people to have good lives. Good lives come from having loving family and friends around you, but also having sufficient funding. One of the things they did was invest in capacity-building strategies to support families and people with disabilities. The change process has taken many years in Australia and it will take many years in Ireland. Families continually telling their stories is quite distressing and they work when those stories translate into action. Putting more money into doing the same thing will not cut it anymore in Ireland. We really need to think differently. Money does not think; it is people who do. We need to get people around the table and use some of those design-thinking processes that will help us to create something different, and invest in families and people with disabilities themselves to be part of those solutions.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Ms O'Toole. I call Deputy Tully to ask her questions.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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Gabhaim buíochas leis an Chathaoirleach. I thank all the witnesses for their presentations. It has been informative and moving and has given me much to think about.

I could not agree more with Ms O'Toole. There is a substantial budget for disability services here. Although not enough, it is not only about the money; it is about how it is distributed. It is not getting to the people who need it.

We are ten years behind Australia in ratifying the UNCRPD, and it will take time to make the changes that are required. We cannot let time pass. This has to be done with a sense of urgency, and that is not happening. Persons with a disability must play an integral part in determining how the UNCRPD is implemented and how they would be allowed to live a fully independent life, and that cannot be done without a properly funded and functional advocacy service.

I am struck by what Dr. Simon Walsh and Ms Fiona Walsh have talked about here. Ms Walsh stated they do not qualify for overnight support. I cannot understand why they would not. Ms Walsh talked about the lack of supports that they receive for Zoe's care. Unfortunately, that is indicative of what we are hearing on the ground from many parents. The needs sometimes vary and they certainly might not be as much as Zoe needs, but we are hearing about parents who are waiting for assessment of need. When they get an assessment of need, they are put on another waiting list for early intervention. Their concern, as pointed out to me, is that the longer they have to wait for early intervention, the more it will cost down the line to deal with the different issues and it is not cost effective. It has been suggested to me that to deal with the existing backlog perhaps there should be a scheme such as the National Treatment Purchase Fund to clear the backlog and start afresh with a proper service.

We are being told that the progressing disability service model is the new model that is supposed to deliver all a child's needs in one place and I am anxious to hear what Ms Fiona Walsh's interpretation of that is. She mentioned the difference in services in Galway and Cork. That is what we are hearing on the ground. The services differ from place to place. That is not good enough. I would be interested to hear Ms Walsh's thoughts on the disability service.

Dr. Simon Walsh talked about how we have a wealth of experience in other countries, such as Irish people who are qualified therapists or even medical personnel, who would like to come back here. He stated it is not attractive for them to do so. What would make it attractive for them? Is it better pay or is it pay and conditions? How would we attract people back? We need them. We are hearing there is a shortage of therapists in all our disability services. There is a shortage of speech and language therapists, occupational therapists and psychologists. Across the board, we need the people here if we are to provide a proper service.

The model we should aspire to is what is happening in Australia. Was the optional protocol ratified at the same time as the UNCRPD or afterwards in Australia, and has that made much of a difference? I am also wondering how people are assessed for the supports they receive in Australia. Do they apply and are they then assessed? Are there waiting lists for those assessments or how was that overcome? Were additional personnel put in?

We have many service providers who provide service for people, especially post secondary school. They may go into a service. Many of the services are of the one-size-fits-all type. There is very little around what the person needs. Some of the services are good but some are not. It is basically take what you get or there is nothing else on offer there. I wonder was there a structure in Australia. What happened to those service providers? What options are there for people post education? Are there other opportunities for training and education and for work as well?

Michael Moynihan (Cork North West, Fianna Fail)
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Now we will go to Dr. Simon Walsh and Ms Fiona Walsh to take those questions.

Ms Fiona Walsh:

The Deputy asked how the roll-out of progressing disabilities is going. I guess it has just transitioned over to that here in Cork. As I said earlier, I was told to pick three things that I would like to work on. That is just not practical. I got a lovely type-out of what those three things are maybe two months ago and nothing has been done since then. I do not call it progressing disabilities; it is regressing disabilities.

I have no therapist. I spoke to somebody on a Zoom call such as this and that is my only access so far to the progressing disability services, PDS. That is not good enough. I want somebody to come and do practical things with my daughter. I do not want it on paper; I want it in person. I am baffled by what the progressing disabilities is meant to be achieving because I am not seeing any results from it here. I am part of a Cork mum's Facebook group and there has been no positive feedback about it. I understand much of that is down to staffing.

There is one physiotherapist who works part time for 800 children under the foundation that our daughter is with. Obviously, he will never be able to see all our children. We should be getting weekly physiotherapy. He has 800 children to see. In a part-time role, how is that possible? Maybe it looks okay on paper. I have seen the videos and thought that this could be a step forward. It has not been.

In Australia, the way it works is you do not go to somebody and be assessed. You say that your goals for this year would be, for example, for us this year if I lived in Australia, that I would love for Zoe to be able to put her clothes on in the morning and the NDIS would fund a carer to come in in the morning and work on that with Zoe. I would say the carer might be there for an hour in the morning helping Zoe get dressed and feeding her breakfast, not like I am while looking after two other kids but focusing on getting her to use a spoon or to pick up a cup and drink herself, and trying to make Zoe's life better and try to give her autonomy.

She needs physiotherapy because she needs to walk up steps. We live in a two-storey house and her parents cannot lift her up and down the stairs forever, so the physiotherapy goal might be walking up steps for the year. Then, we talk about occupational therapy. We would say that Zoe needs sensory breaks and needs a sensory room, so we might put a light in, and the occupational therapist would work on different strategies with us. We would have weekly sessions with the therapist whereas my CDKL5 family in Sydney have two hours of OT per week.

On speech and language, we would be working on different strategies with them but we would get to pick the therapist that we think works for us. It would not be that this is the one person available and this is who we get because of where we live. My daughter’s needs are very different from what that person has trained in, so I might want to go to see another therapist. We have the choice to do that, we are given the budget and we have control of the budget. We then pick out where our goals lie and work on that for the year, and it is reassessed at the end of that year.

It is so far away from this PDS, where we pick three things to work on. It is chalk and cheese.

Dr. Simon Walsh:

With regard to getting specialists home from a medical perspective, I have worked in Australia as a doctor for ten years. The quality of life there is much better, the services are much better and the system works much better. People do not leave work stressed or anxious about the stuff that has happened during the day and they are not attending meetings all the time to try to get things fixed. Their focus is patients and they are able to help patients.

The problem in regard to being with Zoe, with her special needs, was our being so far from family and with parents getting older, so we made the decision we were going to go back to a system that is less functional, and pay did not really come into it. It is about coming home to family and wanting to come home to a system that works. There are a lot of young people out there who do not have the same desire to get back to Ireland. However, we need to make a system that has a better work-life balance so people are not working every hour in the week, and where work is enjoyable because the place people are going into is not a building that is 150 years old and has not been painted. Little things like that make a workplace more attractive. In Galway, my office for two years was in a prefab and the whole department was essentially a prefab. I know they have funding in place to get a new department but that does not happen in Australia, where there are new hospitals. It is little things like that that make people happy to work in a place, and it is the same for all of those specialists and therapists. If they come back and they are stuck in a room with no windows for 40 hours a week, that is not as attractive as a situation where there are people to help with the job, and they are able to work together and have meetings to strategise about how to help these families and children. As Ms Walsh said, someone who is working half-time to see 800 kids cannot see them because those kids are on waiting lists and that does not work. There should be three or four physios. It is just about funding.

Ms Joanne Condon:

I want to pick up on the Deputy's comments on the resourcing of advocacy. We know from the disability capacity review the increase that is coming in the population of people with disabilities. In that context, the role of independent advocacy is essential. It is essential that it should be adequately resourced and essential it should be adequately promoted and facilitated right across the spectrum of supports and services that are being discussed today.

With regard to the people we support, particularly those who may not be able to voice their own experiences, we have a remit to work with those who may lack natural supports or may not be able to verbally share their own lived experiences. Advocacy plays a particularly significant role in representing the lived experience of those people who are still living in congregated settings or inappropriate placements, such as nursing homes for those who are under 65. It is essential to highlight the role of the assisted decision-making legislation, particularly around supported decision-making supports for such people. It is not only advocacy that will play a significant role in giving voice to those people's experiences and the lack of quality of life, the lack of access to community and the lack of access to appropriate therapeutic supports that many of those people experience, and the impact it has on their life, but also the support that people will need once options become available, such as personalised budgets and options within the community. Many of the people who have lived in institutional settings for up to 30 or 40 years have never experienced choice and have never experienced options. They need to be given appropriate supports in line with the supported decision-making set out in the UNCRPD and the assisted decision-making Act to be empowered to be able to make informed decisions of their own free will by sampling and by being afforded appropriate time. It is very important to recognise, in the context of all of the discussion we are having about the future of services, the important role of hearing the voices of those who often do not get heard.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank the witnesses for their powerful presentations. I call Deputy Murnane O'Connor.

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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I thank all of the witnesses, in particular Dr. Walsh and Ms Walsh for their story on Zoe. There are many more families who are affected like Zoe’s. Many of the questions I want to ask have been asked. Dr. Walsh and Ms Walsh were in Australia and had the services there, and they then came to Galway and Cork. Do they see the failings within the HSE? We have nine community healthcare organisation, CHO, areas. Within the CHOs for the different areas, do they feel we could make changes? There seems to be a lack of communication, a lack of services and a lack of awareness. While Covid has affected everyone's life, the past two years have been particularly hard on families who have a family member with a disability. Where do they see the failings within the HSE? The CHO will play the biggest part. Do we need a full change there?

I have a question for Mr. Broadhead on the NDIS. Is there any other model like that around the world? If he had to pick an action plan on the basis that there are a certain number of actions that Ireland needs to take, where does he feel the actions should be?

It is not right that we are here listening to this story and I know there are many others. We need to make sure that we make change now but how do we begin that change? Where do we start? We need to start. Ms O’Toole said that we need to change our mindset but we also have to be practical. Funding is one of the biggest issues facing all of the health sector, as we can see ourselves. Ms Loughlin spoke about the national advocacy service and while she did get extra funding and we welcome that, some 65% of that funding went to residential care. We need to expand our other services. I want to know what we need to do to start the plan. How do we start it? How do we, as Oireachtas Members, commit today to working towards and supporting the actions?

We need to talk to the Minister, and I will speak to the Minister of State, Deputy Anne Rabbitte, on this because it is important. She tried to attend this morning but she had other meetings, although I told her this meeting was important. As in other areas, she is trying to give funding across all of the sectors of disability. What do we need to do to start going forward? What groups need to meet? What areas do Dr. Walsh and Ms Walsh feel we need to prioritise? In fairness to them, they are so professional about what road we need to take. As a doctor, where does Dr. Walsh think the start needs to come?

Dr. Simon Walsh:

The big things Deputy was talking about were the HSE’s failings. For the South/South West Hospital Group in Cork and Kerry, where I work, the problem is that its budget is for the hospital and all of the community hospitals in the area, and disability services as well.

They are being pulled in many different directions. The hospitals are underfunded and understaffed. Most people see the need for a major hospital and the trauma network that is coming in. Considerable funding is going to that. Disabled people represent a small proportion of people who require funding meaning there is less of a draw for the head of the South/South West Hospital Group to provide funding for that. In Galway, the Brothers of Charity and the Department of Education came together and both fund the disability services, whereas in Cork it is all done through Cope Foundation. It is just underfunded.

Do the people at the top need to be diverting more money towards disability? That is an easy thing to say but then money is being pulled from elsewhere, for example, from the emergency department. If there was a big bucket of money and it was possible to do that, they would rebuild all the buildings and get all the therapists in, but we just cannot do that because there is pull from every direction. Everybody wants money in their direction. It would be great if we got money in the disability direction, but money is needed everywhere.

Ms Fiona Walsh:

In Australia now with NDIS it is done through private therapists. Someone might identify a speech and language therapist who is a specialist in eye-gaze technology and decide to see that speech and language therapist rather than one in the local area. That person can then decide that from their budget €130 a week will go towards that speech and language therapist. I do not know if that model could be used here. The only access to services we have is to go privately, which was part of the consideration in moving to Cork where there are private services. There is a great market for them because access to public services is so poor. Much of that is down to the population here. It is a big city and everything is oversubscribed, including the waiting lists for schools. There are many kids with disabilities but we just do not see them very often because like us they are hidden in the home much of the time.

Michael Moynihan (Cork North West, Fianna Fail)
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Does Mr. Broadhead wish to comment on Deputy Murnane O'Connor's point on where we start from here?

Mr. Peter Broadhead:

I understand the question and it is not really my role to tell in another country what it should do. The most radical part of introducing the NDIS in Australia was moving away from funding providers to funding people with disability. That was the transformation in a nutshell. That was not easily done. You can imagine how it was received by the organisations that had been funded to provide services. It was very painful for organisations, all full of good intentions and good people. They had to change from an organisation that had certainty of funding to provide a level of services to as many people as they could with that funding to actually having to compete to get payment from the people with disability for the services they provided. Many made the transformation successfully; some did not. That is still something that is working out in the way we have created a market for provision of services rather than a block-funded set of arrangements.

The phrase I hear most often repeated by the government for which I work is "fully funded and demand driven". It is a repeated statement because people doubt that this thing will be fully funded and demand driven and yet that is the commitment that has been made. The cost has now reached a higher level than was expected, but the government of the day has said it is committed to fully funding it and it is demand driven.

The Act sets the criteria for assessment and then for the funding people receive. It is not formulaic; it is individualised. Simon and Fiona Walsh probably know more about it through direct experience. A plan is prepared taking account of the reports and information a person or his or her family brings to a planning meeting and that is what determines the level of funding provided to a person. The application is based on significant and permanent disability. Any person with significant and permanent disability is eligible for the scheme assuming they meet the permanent residence, citizenship and age requirements. The plan is then done, the person receives a sum of money and purchases services in a market with various providers.

There are difficulties in Australia, as Simon and Fiona Walsh will know. It is a very big country with a small population for the area of land. Therefore, we have difficulties getting out to remote areas. We do not have hot and cold running therapists in the remote parts of the country. We have had our problems and challenges in doing this. A market model is quite difficult to make work in those circumstances. However, considerable work has being put into expanding the workforce. We still need another 83,000 people to join the workforce in the coming years and that is after already increasing it by a significant number. Much of that is not high-level therapy, but personal care and those sorts of workers. However, throughout there has been a political commitment by governments to it and the journey goes on.

Somebody asked if there is another one like it in the world. I am not aware that there is, but that is not to say there are not some that are similar. In the early days of what people call client-directed care in the UK, we looked at that years ago as interesting experiments again where people were given sums of money to use how they thought suited them best. This was not completely new in the world, but I do not know of another scheme that has rolled it out on this scale, in this way and in this timeframe. I would not claim to know what each of the 190 countries around the globe does.

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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I compliment Mr. Broadhead; you have a great scheme.

Mr. Peter Broadhead:

It was not me personally, but I thank the Deputy.

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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I refer to the Australian Government. It is a great scheme. Well done.

Ms Louise Loughlin:

I wish to clarify my point on the funding for the advocacy service. The point I was making was that the funding for disability generally, not just for our service, is still very focused on residential services. Some 65% of the HSE's budget goes to residential services. That feeds into something that Mr. Broadhead highlighted. We have many very big providers. There is considerable interest in disability service provision. It is still driven by a model of people having to fit into the service and it is not individualised. We need to harness things such as the pilot programmes on individualised budgets, which are due to be completed next year as I understand it.

We also have the transition of responsibility for disability away from the Department of Health into the new Department. While I know that is quite controversial, it grounds disability in equality and not in healthcare. Disability is not just about healthcare; it is about a whole-of-life approach. Some good things are happening but we need to work out how to harness that to get to the next level. To get a model similar to what Mr. Broadhead has described it is about building an alliance in civil society and at governmental level. It also requires looking at legislative provisions. People do not have access to services as a legislative right here. It is not a justiciable right to say I need access to speech and language therapy or that my child does. There is no law underpinning it. There are other pieces we could also look at.

Ms Aoife O'Toole:

I wish to add to what Ms Loughlin said. We are already on the journey to offer some hope. The demonstration project on personalised budgets is one of those ways we can learn to do things differently. We need to invest in it because families are on that journey alone. They are not connected and are not sharing their learning with each other. The HSE is developing its action plan. We could insert into that supporting new and innovative ways of working. We could set some targets and look at partnering differently with social enterprises and some of the emerging entities that can deliver services in a different and perhaps better way while we are still trying to fix the system.

Take the example of Covid-19. The HSE did not develop the Covid tracker app; it partnered with other industry experts that use technology and digitalisation. They got together and looked at the problem, what the options were and how it could be fixed. They decided to create a minimum viable product, get it out and test it. Those methods are ways that can help us in the disability area and offer some hope. We are on that path. There is a huge amount of expertise in Ireland because there was massive investment from 2010 to 2020 whereby we learned from other countries. There are family bodies that have been on this journey and that know how to do what is different. There are new organisations in the marketplace now. We are there, but we cannot be risk averse and the system has to support that. When I was working in services, trying to do something different was very difficult. If anything, the system pulls and sucks one back into its way of working because that is what systems do. We have to be brave and courageous and use the mechanisms we have now, invest in the projects and other things we are testing and share the stories of what is possible, as well as hearing about all of what is not broken. There are many things that are working.

Holly Cairns (Cork South West, Social Democrats)
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I thank the witnesses for attending the committee meeting today. It has been both informative and infuriating to hear from the different witnesses. I am particularly struck by the statement of Dr. Walsh and Ms Walsh. Being a Cork Deputy, I can attest to that. There is nothing my office is contacted about more than the absolute absence of support services in the area. They spoke about the absence of kindergarten services in Cork city. In all of Cork South-West, south of the city, there is not one special school. It is a constant issue and one this committee has heard about continually. Dr. Walsh mentioned that they are fortunate enough to be able to pay. We speak to many families who just cannot pay and their children are not getting the services they need. The early intervention is so important. We are talking about how to do this, and asking questions and scratching our heads as to how we go about it, but we need to call a spade a spade as well. Dr. Walsh clearly mentioned that progressing disability services is a failure. I said that straight out to representatives of the HSE at one of our meetings - I think it was last week. People are not getting the services they need.

If we want to look at how we should go about addressing this issue, there is an obvious first step, which is funding it. The Department's capacity review stated that €350 million is needed to meet the unmet needs of people with disabilities in this country. There was an additional €65 million in the budget, so there is no actual intention. Mr. Broadhead spoke about how Australia ratified the UNCRPD a year after it was introduced. It took Ireland ten years to do so, which is disgraceful, and we still have not ratified the optional protocol which obliges the state to allow people to exercise their rights. We have to be more upfront about the reality of the situation here. It comes down to political will, and that must change. Mr. Broadhead spoke about creating awareness in Australia and the public wanting it. The public in Ireland absolutely want it. One can see that by virtue of the fact that where the State abdicates responsibility one sees the general public often swooping in with fundraisers and not-for-profit organisations trying to support families and individuals. There is certainly the public will; we just need the political will and the funding. The country can afford it.

The comparison between Cork and Galway is stark. Even more stark is the comparison between Australia and Ireland. Having worked abroad in disability support services, I have to say that it is not just Australia. When I was working in Malta the service I was working with had daily access to speech and language therapy, occupational therapy, equine therapy, hydrotherapy and art therapy. The list goes on. It is about encouraging people to live independently, but here one cannot even get an hour of speech and language therapy. I am sorry for going on, Chairman.

As to my questions, because of the ones addressed by previous speakers I will direct my questions mainly to the representatives of the National Advocacy Service for People with Disabilities. I hear many positive reports about the service it provides and it would be useful for the committee to learn a little more about that. Perhaps the witnesses could give us a sense of its work. One of the clearest and most worrying points raised before this committee is that individuals and families have to fight repeatedly for basic health, education, transport and care services. As well as it being simply wrong that people have to do that, it also implies that people have the capacity and means to struggle for services. It would be useful for the committee to understand the vital service provided by the National Advocacy Service, the issues it helps individuals with and how long it can take to resolve those cases. Ms Loughlin mentioned in her opening statement the reality that there will be more people living with disabilities in the future. How will the service be able to cater for the accompanying increased demand? How many advocates are there nationally? Is there an estimate of how many more will be needed to reach international best practice?

Ms Loughlin also highlighted eradicating the practice of next-of-kin consent. It has no legal basis except in certain circumstances, yet NAS advocates encounter it in different settings. Can she elaborate on that for the committee so we can have a better understanding?

Finally, Ms Loughlin specifically discussed the disgraceful situation of over 1,300 people under 65 years old who are forced to live in nursing homes because the State is not providing independent supported living. I am aware of situations in my constituency where people are forced to be in a psychiatric ward because there is no opportunity for any type of independent supported living. Can Ms Loughlin describe the issues advocates have encountered and the rights they have helped individuals fight for?

Ms Louise Loughlin:

I thank the Deputy for her questions. I will reply and bring in Ms Condon later. I will tell the committee a little more about our service. The National Advocacy Service for People with Disabilities is funded by the Citizens Information Board, which is funded by the Department of Social Protection. It has a particular remit to support people who are isolated in their communities, living in residential services and who communicate differently. Our service is only for adults so we do not provide support to children, although we see people when they age out of our education services and come into adult services. That is where we see the future impact of the issues and situations that Dr. Walsh and Ms Walsh have so eloquently highlighted.

On the Deputy's question about the types of issues that arise for us, they are very wide-ranging. Housing is a major one. When we describe housing we mean the broadest range in terms of accommodation. We are talking about people who might be living in residential services, an old-style institutional setting, who no longer want to be there. It can take a very long time to support people to transition out of that into independent living. It can also mean people, particularly on the autism spectrum, who can find themselves on the cusp of homelessness or homeless. That can be an issue, especially in Dublin.

One of our main areas of work is supporting people to build their own capacity in decision-making and to be involved in decisions. Ms Condon highlighted in one of her earlier remarks the fact that when many disabled people are given the opportunity to make decisions or exercise choice they find it extremely challenging due to the disempowerment they experience from quite a young age in terms of not being supported to live their lives to their full capacity. They require a lot of support to get to that point. Much of our work is on building people's confidence and autonomy to even voice their concerns about decisions that are being made for them and about them in respect of quite fundamental basic rights regarding where one lives and how one spends one's time.

The other area in which we are involved is access to justice. Some of the issues in respect of next-of-kin and ward of court are a particular theme of our work.

We have not done a projection per sewith regard to what has emerged from the capacity review in terms of the longer term growth in the number of disabled people. We currently have approximately 28 advocates around the country and eight senior advocates, with a very small management and support team for that. We have waiting lists, and they have been growing. We will be seeking an increase in resources to support us to fully deliver those services because it takes us a long time to support people to achieve the outcomes that they want to achieve.

We anticipate that when the Assisted Decision-Making (Capacity) Act 2015 is commenced next year, there will be an increased demand for advocacy there, as people seek to implement the provisions of the Act in terms of their own decision-making. I might refer to Ms Condon to talk about next-of-kin, some of the case work, how long it can take and the complexity of it, some of the issues that Dr. Walsh and Ms Walsh have highlighted that we see on the adult side, how complex they can be and why advocacy is so critical.

Ms Joanne Condon:

I thank the Deputy for her question. As Ms Loughlin has mentioned, the work of advocates can span across all of the areas that Ms Loughlin mentioned in terms of the issues involved. The Deputy asked a question on the length of our case work. I guess it depends on the complexity and the number of issues involved. For many of those we work with, they are facing not just one or two single issues; there can be multiple issues. A person may have lived in an institution for many years and he or she may have a poor quality of life, limited natural supports, limited access to appropriate therapeutic supports and limited access to his or her community. That can be further compounded by the likes of next-of-kin consent issues. For example, we do a lot of work around issues such as Do Not Attempt Resuscitation orders, where individuals' own wishes are not being sought should they be facing end-of-life or emergency decision-making. Their decisions around treatment choices as to whether they should be accessing healthcare services are often ignored to the detriment of seeking families' wishes as to how they want their loved one to be cared for. Obviously, for an adult with a disability in the context of discussions around the UNCRPD and rights and people living ordinary self-determined lives, it is essential that people's voices are heard and they have the opportunity to make those decisions for themselves. We do a huge amount of work in upholding rights in pointing to the HSE's consent policy, which very often is not understood or implemented across many divisions of healthcare services. There is a prevalence of next-of-kin forms that exist within our healthcare services that seek the consent of third parties, which has absolutely no legitimate basis without proper legal authority to do so. That is a huge area of our work.

Throughout the Covid-19 pandemic, we have also seen much next-of-kin decision-making with regard to Covid vaccines. Again, people's own wishes around whether they chose to receive or refuse vaccinations were ignored and family members were asked to make decisions. At a very basic level, rights are not being respected in day-to-day decision-making, never mind the fight with regard to access to services that we have already heard so well described by the previous speakers. We also work with those who are most marginalised, wards of court and those whose voices often do not get heard in decision-making forums. We work to represent those voices and ensure that they are heard so that people can have a say in what happens to them, where they live and the decisions that others are taking. We very much welcome the abolishment of that system as we move towards full implementation of the Assisted Decision-Making (Capacity) Act .

With regard to other areas, such as employment and parenting with a disability, we also provide quite complex support to those who are navigating the social care system when their children may be taken into care, they are attending court and there are care proceedings. We support people's access to justice, ensuring equal opportunity and fair process, ensuring that people understand and have support. Significant improvement can be made in the area of accessibility and access to services. There is a distinct issue in how Ireland currently defines disability with regard to HSE service provision. We need to move more towards the definition of disability with regard to how people access services. It is really encouraging to hear Mr. Broadhead explain that in the Australian system, the definition of advocacy that applies in terms of accessing services is that broader piece, and it is not based on assessment that we see here in HSE services, with the distinction between mild and moderate disability defining whether individuals can access services. There are so many obstacles that people face on a day-to-day basis to access their basic rights and services, to have their voices heard and to live quality lives. We must come back to the fact that it is not just about receiving a service; it is about having a good life. Everything that the advocacy service does right across all of those issues that we have just described is about supporting people to live lives of their choosing where it matters, with access to home supports, PA support and community services, and ensuring that they can build capacity and have the opportunities that everybody else has. There is a big gap there still.

Emer Higgins (Dublin Mid West, Fine Gael)
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Apologies, but I had to duck down to the Chamber for ten minutes so I missed a bit of the last session. I have been listening with huge interest. This has been a most interesting discussion today. I think it has been particularly useful to get the international dynamic from Mr. Broadhead. My sister-in-law is Australian and her family are quite familiar with the new system over there. She raves about it to me all the time. It is interesting to hear Dr. Walsh's and Ms Walsh's experience of Zoe's counterpart. It is interesting to hear that they can see like for like, and the Australian system is outperforming our system and is meeting the needs much better than we are, unfortunately. In respect of my own background, before I became a Deputy I worked for a multinational corporation. When we worked on projects, we used to always identify successful projects and things that worked in certain countries or areas of the business. People were tasked with coming up with a play book that could effectively be given to other arms of the business to show them how to do it and what success looked like and to provide them with all of the tips and tricks to get there. Obviously, even in that situation, national laws were sometimes an impediment and national resources had to be looked at. It was key that there was such a focus on sharing that information in cases where something worked and was successful, and trying to bring people up a level. I value the contributions of all the witnesses, but it is really valuable to hear the Australian perspective today. We have a lot to learn from it. I am pleased that Mr. Broadhead has taken the time to talk us through it. I hope that we can further collaborate, because that is how we can improve the Irish system.

The funding model, in particular, that Mr. Broadhead spoke about is quite interesting, where funding is allocated to an individual or a family and they acquire the services that they need themselves. I was not expecting that to be working so well, given that quite often we hear from witnesses at this committee who may have been given funding for a PA-type service and cannot acquire it. They have the money, but cannot access the service and it is of no use to them. I would like to ask some questions around the practicalities of that in the hope that we could learn and put in place systems that could help the likes of Dr. Walsh, Ms Walsh and Zoe and all of the organisations that are represented here today.

I am wondering what happens from a human resources perspective. Are there enough professionals in the area? Were there enough already when the new scheme started out, or was investment in recruitment strategies required? Did the Australian Government have to invest in courses so that people could qualify in an area to be recruited? Are there geographical issues? Obviously, Australia covers a massive area. Mr. Broadhead referenced Alice Springs, where there may be a higher prevalence of demand, but it obviously has quite a small population. How does it work in situations like that? I would be particularly interested in hearing any lessons learned from the recruitment aspect. A number of my colleagues referenced Sláintecare. That is quite similar to the strategy that Mr. Broadhead spoke about in that it continues no matter who is in power or government. It is an initiative that is cross-party and that everybody signed up to. I believe there is a lot in that that we need to continue, but we also need to ensure that it adequately addresses this entire area. As we set out to do that, I wonder if there are particular lessons that the Australian Government has learned or challenges that it has had to overcome on the human resources side, in particular. I would appreciate any information on that.

All the participants have brought unique perspectives to the meeting and I really value them. It is important that we have these kind of discussions. They put these issues on the agenda nationally. That is what we have to do if we are to make a change.

Michael Moynihan (Cork North West, Fianna Fail)
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Does Mr. Broadhead want to start? Then we will go to Dr. and Ms Walsh.

Mr. Peter Broadhead:

Workforce has been a challenge. We are lucky that we have got a reasonable workforce. The biggest expansion has been in personal care workers - people providing assistance with activities of daily living. The Chairman mentioned geography. We have some shortages in some types of therapies here and there depending on which part of the country one is in. In Australia we have always had a challenge in any form of provision when we get out into our remote areas. That is a continuing challenge. We have a phrase, "thin markets", which basically means that people do not have sufficient choice of providers in those areas. We have thin market strategies where we try to encourage people into those areas. Fortunately, we have some large-scale providers that will take steps to move their workforce into areas that are underserved. It is still a continuing challenge, partly because it has been such a big expansion. If we had only taken what we did before and re-engineered it and provided the same level, the workforce would be there but it has been a significant expansion.

A website was built that modelled small local areas. We took data from people who were participating that anticipated the funding we were giving and the kind of services they would require. The website can map small areas and predict how many workers we can expect to be required in that area. Because it is a market-based model, it is about trying to give service providers sight of where they have opportunities to expand. Because it has been expanding for some years, there is some gearing up, workforce training and so on. The training institutions in our country see this as an opportunity. People see it as an opportunity to get work. There is a lag and there are challenges but over time the workforce is expanding. I mentioned earlier that we still need to bring in another 83,000 workers to meet what we expect to be the level of demand going forward.

Emer Higgins (Dublin Mid West, Fine Gael)
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I am sorry, could Mr. Broadhead repeat that figure?

Mr. Peter Broadhead:

It is 83,000.

Emer Higgins (Dublin Mid West, Fine Gael)
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Wow, okay. That is huge.

Mr. Peter Broadhead:

That is on the back of expansion of a similar order that has taken place. Many aspects relate to ratifying the optional protocol, which we did in July 2008. I did not mention that earlier. I will have to have a reboot enforced by our IT department. That is the best I can answer that question.

We have a history in our health service in Australia of applying insurance models to the supports. If I go to a GP I get a reimbursement from the government towards the fee but I pay when I go there. Social insurance was included in the terms of reference of the review of how disability care should be provided. I was specifically asked to look at the notion that this should operate as an insurance model. The associate commissioner at the productivity commission, who was one of the key people in writing that report, had a lot of history in workers' compensation schemes. We have government-based workers' compensation and transport accident schemes at state level. They brought that expertise and world view to some of the questions in the terms of reference. Does that address the Deputy's question?

Emer Higgins (Dublin Mid West, Fine Gael)
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It does. It shows how big a challenge it is. I thank Mr. Broadhead for taking the time to go through that and for staying on the call. I am sure it is late at this point where he is.

Michael Moynihan (Cork North West, Fianna Fail)
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Do Dr. and Ms Walsh want to come in?

Ms Fiona Walsh:

Yes. We lived in the outback while we were in Australia. Simon was a flying doctor. Zoe had medical emergencies while we lived there and we had to go to hospital in Adelaide. I was flown down there with Zoe. I have a friend who lives in Alice Springs whose son has disabilities. She travels to Brisbane and Sidney for therapy. Therapists also fly in and out from there. They might do two weeks on and two weeks off.

In Ireland, we are lucky in that if I have to go to Limerick for a specialist appointment, I can hop in the car. We go to Boston to specialists so that would not be a big deal for me. Recently myself and six other mums came together and approached the therapists in Boston. The name of the group is Neurological and Physical Abilitation, NAPA, Center. We put a proposal to them to come to Ireland and work with the kids here. They are coming here for six weeks next year. These are world-renowned experts absolutely at the top of their field. Unfortunately, they are coming here for six weeks only. They do three-week sessions. There were more than 500 applications and only 18 places in the six weeks. The demand is massive. NAPA Center is a business. They can see that. For myself and other mums, our hope is that they will see how much of a need there is for this service here. They have locations in Australia and all around America. Our hope is that they would make Ireland their European base. If the funding is there, the specialists will come.

Michael Moynihan (Cork North West, Fianna Fail)
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Do Louise, Joanne or Aoife want to make any comment? They are okay. I thank the witnesses for their very thought-provoking discussion. Deputy Cairns is indicating.

Holly Cairns (Cork South West, Social Democrats)
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Is there time to ask one quick question before we wrap up?

Michael Moynihan (Cork North West, Fianna Fail)
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Yes.

Holly Cairns (Cork South West, Social Democrats)
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Mr. Broadhead mentioned the ratification in July 2008 in Australia. Was that the ratification of the UNCRPD alone or of the optional protocol also?

Mr. Peter Broadhead:

The optional protocol was also ratified in July 2008.

Holly Cairns (Cork South West, Social Democrats)
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Ireland is yet to ratify the optional protocol and it took us ten years to ratify the UN convention. The Irish Human Rights and Equality Commission was before the committee as was the UN special rapporteur. They both said that Ireland can ratify the optional protocol in the morning. There is no good reason for delaying any further. We consistently hear from the Department that it needs measures such as the assisted decision-making Act to be in place beforehand and that it needs all these other things. It keeps shifting the goalposts and putting something else in the way that means we cannot apparently ratify. To alleviate some of the worry about ratification that seems to be blown out of all proportion here, did Australia encounter any disasters after it ratified the optional protocol?

Mr. Peter Broadhead:

Not to my knowledge. I was not in the role I am in now back in 2008 so I do not have first-hand experience. I cannot comment on the Deputy's local situation. It is not my place to do so.

Michael Moynihan (Cork North West, Fianna Fail)
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Thank you. I thank the witnesses for their honesty. We are intercontinental this morning in more ways than one, with witnesses contributing remotely from abroad and describing their lived experiences in Australia as well. Throughout our committee work we have spoken about the lived experience of people with disabilities and their families.

It has been very powerful to hear Dr. Walsh and Ms Walsh and to hear of the advocacy groups' work behind the scenes. I know the effort that goes into trying to fight for facilities and rights. It is a never-ending issue. I thank Mr. Broadhead for joining us from Australia.

There is an ingrained attitude within some systems, and that attitude needs to change fundamentally to ensure adequate funding. We will follow up on the optional protocol and do whatever we can to ensure it is implemented as soon as possible rather than listening to any further excuses. I was struck by Dr. Walsh's and Ms Walsh's commentary on Galway versus Cork. Ireland is a small State yet we cannot have universal delivery within the country. We need to look at that. We have to challenge the CHOs individually to see why there is not conformity throughout the country in the delivery of the services. I deal with one of the service providers that span one of the CHOs, the south west and the mid-west, and they tell me there is a different attitude between the two. That is simply unacceptable.

The witnesses have been very honest about being able to provide the therapies privately because of their position. We need to challenge the HSE. I have heard of several cases in which people have left the private sector for a job in the HSE. They get frustrated by the HSE and go back to the private sector. I am talking about occupational therapy and speech and language therapy. People working in those fields say that if they go into the public sector, they have secure employment, but they have gone there, been at the coalface and experienced huge frustration and then they have left the sector and joined the private sector again because they get more job satisfaction and a sense that they are doing something with their training. We have to look at that and challenge it.

At this point in time do we have to see whether the HSE can buy the services of the private providers? A large number of private providers have set up play, speech and language and occupational therapy services. Is it a question of how we need to look at the HSE contract for those services? I do not see another solution in the short term. I see families coming to my office, as other members have said, looking for help, guidance and support, and I do not know what it is. I do not normally ask questions because I believe it is for the members to keep the ebb and flow of meetings but I will put one point to Dr. Walsh and Ms Walsh. They are getting services from private providers, and many of them are excellent and dedicated to their job beyond words. Is this something that should be looked at? It is only a commentary. I am thinking of Dr. Walsh and Ms Walsh as having the lived experience and being at the coalface of trying to deliver services for their daughter.

Dr. Simon Walsh:

Definitely. Every parent will decide how much therapy his or her child needs. No one wants to overburden their child, and some parents will be much keener to get more therapy for their children because they think it might make them better, but after a while people find a happy medium. We have recently cut back on the physiotherapy we provide because it was a lot of work for us to be travelling around the county every week. We have cut it back to fortnightly. If we were able to submit the bills to the HSE and get reimbursed, that would be amazing. That is only one small thing. Wheelchairs, high chairs and little things like that come out of our mortgage budget. Other people are not able to fund them. If we were able to submit those bills to somebody, it would be a huge step.

Michael Moynihan (Cork North West, Fianna Fail)
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Ms Loughlin is anxious to come back in.

Ms Louise Loughlin:

There is already quite a bit of private provision funded directly by the HSE in the form of home support and personal assistance. A lot of that goes through private providers. Additionally, the HSE and the traditional section 38 and section 39 services we have are using private providers to provide residential placements. That can be welcome, but I would add a note of caution that the positive experience Dr. Walsh and Ms Walsh have described is not reflected across the board. Sometimes there can be providers coming in and going out of Ireland quite quickly for different reasons, and that can lead to a lot of inconsistency in services. While we have regulation around residential service providers, it does not always look at the quality-of-life issues. HIQA is focused on what is in its regulations. Our experience of quality of life and some of the issues Ms Condon has described is that the variety of provision is huge when we look at traditional providers and private providers. Another experience we have had is that many private providers in the residential space are using properties that are very far from people's home locations or their bases of interest, that is, their families and communities.

We all love the hybrid models these days. We need to think a bit differently about this and look at private providers. We really have to look at the values and ethos of those services as well and make sure they have the commitment the Chair described such that it is not just an in-and-out, money-making exercise. They have to have certain standards to which they operate. Again, it has to go back to a person-centred service. It cannot just be the provision of a bungalow for six adults with intellectual disabilities. It has to be tailored to those individuals. That is the critical piece if we want to bring in private providers. Private providers should not be used just for a quick fix; it should be ensured that the design of what they are delivering meets the needs of the people the service is for.

Ms Aoife O'Toole:

Chairman, you have probably brought us full circle because the demonstration project on personalised budgets allows families to do that. It gives them that option to look at what they need most and they have the fund to be able to pay for that. We are on the journey towards getting to where Australia is at with the national disability insurance scheme, NDIS. It is here in Ireland and we need to invest in it and protect it. That would be very helpful for families into the future.

Michael Moynihan (Cork North West, Fianna Fail)
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The two things coming out of this meeting are funding and attitude. I thank all our witnesses sincerely for a very informative discussion, our members for their commitment to the Oireachtas Committee on Disability Matters every week and our team in the background that keeps it going. If there is any information or evidence the witnesses would like to share with the committee either now or in the future, we would very much appreciate it if they would email us the relevant documentation or anything else. We are keeping this matter under constant review. We have a fairly busy schedule of work over the next while, but we are very interested in seeing whether we can do something about this. Thank you, one and all - the witnesses, the members and the team.

Our next meeting will be a private meeting at 9 a.m. on this day week. The public meeting next week will be at the later time of 11 a.m.