Pauline Tully (Cavan-Monaghan, Sinn Fein)
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Apologies have been received from Deputies Moynihan and Phelan, and Senator O'Loughlin. The purpose of today's meeting is to discuss aligning disability services with the UN Convention on the Rights of Persons with Disabilities, UNCRPD, in particular an update on progressing disability services. On behalf of the committee, I extend a warm welcome to the Minister of State at the Department of Health with responsibility for disabilities, Deputy Anne Rabbitte; Ms Patsy Carr, principal officer, and Ms Audrey Hagerty, principal officer, Department of Health; Mr. Bernard O'Regan, head of operations, disability services, Ms Breda Crehan Roche, chief officer of community health organisation, CHO, west, and Professor Malcolm MacLachlan, clinical lead for people with disabilities, HSE; and Mr. Niall Brunell, principal officer, Department of Children, Equality, Disability, Integration and Youth.

I remind members that they are only allowed to participate in the meeting if they are physically located on the Leinster House complex. If members are joining the meeting remotely, I ask them to confirm they are on the grounds of the Leinster House campus prior to contributing to the meeting. For anyone watching this meeting online, witnesses are accessing this meeting primarily from this committee room. Due to these unprecedented circumstances, I ask that everyone bear with us should any technical issues arise.

Before we commence formal proceedings, I must begin with some formalities and advise our witnesses on the matter of privilege. Witnesses are directed that only evidence connected with the subject matter of these proceedings is to be given. 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 wish to advise witnesses giving evidence from a location outside of the parliamentary precincts to note that the constitutional protections afforded to witnesses attending to give evidence before the committee may not extend to them. No clear guidance can be given on whether, or the extent to which, the evidence given is covered by absolute privilege of a statutory nature. Persons giving evidence from another jurisdiction should also be mindful of their domestic statutory regime. If they are directed by the committee to cease giving evidence in relation to a particular matter, they must respect that direction.

Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise, or make charges against a person or persons outside the Houses or an official either by name or in such a way as to make him or her identifiable.

I call on the Minister of State, Deputy Rabbitte, to make her opening remarks.

Anne Rabbitte (Galway East, Fianna Fail)
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I thank members for the invitation to appear before them once again. The work of the committee is an important vehicle for making sure that the whole of Government looks at disability issues as a priority. I am thankful for the work it has done, not least the work that was carried out in producing the report on aligning funding to the UNCRPD which we spoke to in the Dáil last week.

To help ensure that our health-funded disability services are progressing to meet our obligations under the convention, this Government has acted to bring the different branches of disability together. Early next year the disability policy functions currently in the Department of Health will transfer to the Department of Children, Equality, Disability, Integration and Youth. This means I will have all strands of disability policy under my remit in one Department. This will facilitate easier collaboration and innovation in the delivery of services to persons with a disability.

More than 90% of people with disabilities are supported through mainstream health and social care services. However, the 60,000 people who require specialist disability services will continue to be my responsibility in the new Department. Transforming Lives currently is the major policy programme for services for people with disabilities. This is a national collaborative effort to build better services. My objective is to build a more responsive service model for people with a disability where greater flexibility, choice and control from the service user's perspective is central, progressively improving in line with the social model of disability and the UNCRPD. Under Transforming Lives the focus is on developing individualised person-centred supports to enable people with disabilities participate to their full potential in economic and social life in the community and be enabled to live ordinary lives in ordinary places.

My opening speech is limited to five minutes and members have asked specifically about services, so let me give them a whistle-stop tour of where we are with the health-funded disability services. I can provide additional details later if members wish. Members will be aware that we recently published the disability capacity review which outlines capacity needs to 2032. This report quantifies and costs future need for health-funded disability support services. It is important to note the report quantifies this from a 2018 baseline and not a 2021 baseline, that is, the funding requirements as set out in the report are relative to 2018 expenditure, and not to 2021 expenditure. An interdepartmental working group is now preparing the action plan for consideration of the Cabinet social policy subcommittee as soon as possible. I understand our obligations under Article 4 of the UNCRPD and the development of the action plan that is currently under way was enhanced by a wide ranging consultative process undertaken by my officials in September this year. I fully support the term "nothing about us, without us".

Budget 2021 provided more than €100 million new development funds for health-funded disability services, and in budget 2022 a further €115 million was allocated to these services. This unprecedented level of funding serves to demonstrate Government’s commitment to persons with a disability. The main policy areas being developed with this record funding are: progressing children’s disability services, which will see 91 children’s disability network teams in place by the year’s end. This represents the most significant reorganisation of health and social care services ever undertaken in the State. Under New Directions, day services assist and support adults with disabilities to engage in and be part of their community. New Directions states that service locations should be decided with a view to enabling people with disabilities to be an integral part of the community rather than segregated or removed from the community. New developments take the form of hubs from which people with disabilities are supported to access local services and take part in local activities. The school leaver programme has seen 1,700 people profiled for offers of day service places this year, and preparations are under way for the 2022 class.

I am committed to allowing people to live at home with their families and loved ones as much as possible. To support this eight respite centres have opened this year, with another one to open in early 2022. This will add an additional 10,400 respite nights in a full year. The HSE also provided 214 intensive respite support packages to children and young adults as well as alternative respite in the form of innovative in-home supports, sports or summer camps, holidays, or hotel breaks. For 2022, the breakdown of service provision will be finalised as part of the national service planning process. However, respite is a priority as the pressure it eases for families cannot be underestimated.

An additional 40,000 personal assistant hours are provided in 2021. The HSE will deliver more than 3 million home support hours to 2,550 people for delivery of more than 1.7 million personal assistant hours to 2,590 people this year. I have also ensured that the single biggest increase in funding will be made available for personal assistant hours in 2022, after allocating €3 million extra for personal assistant hours next year.

This year 144 people were supported to move from congregated settings to smaller homes within local communities. A similar number of people will be supported to move in 2022. An additional 102 new residential places were provided in 2021 based on priority need, including 58 emergency places.

I am aware that colleagues are interested in the movement of under 65s away from nursing homes, as I am too. Some €3 million was allocated to the HSE-led pilot project in 2021 to assist 18 people inappropriately placed in nursing homes to move to more appropriate housing options in the community. Budget 2022 provides an additional allocation of €5.5 million to address the situation of such young persons. The HSE is progressing work in this regard, including a survey and mapping of the records and wishes of existing under 65s in nursing homes. It is envisaged that the mapping exercise will be completed by mid-2022.

I will pause here and hand over to the HSE but before I do, I would like to say that I am delighted to see my colleague and the Chairman of the committee, Deputy Michael Moynihan, join us this morning on the call. I thank the Chairman for all the work he and the committee have done since it was set up. It has been a huge asset and a benefit in creating not just awareness but in feeding into how policy is decided and delivered on.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I thank the Minister of State, Deputy Rabbitte, for her opening remarks. I now call Mr. Bernard O'Regan.

Mr. Bernard O'Regan:

I thank the committee for the invitation to meet it today to address matters relating to aligning disability services with UNCRPD and, in particular, an update on progress regarding disability services. I have recently taken up the role of head of operations replacing Dr. Cathal Morgan who previously attended meetings with the committee. I am joined today by Ms Breda Crehan Roche, chief officer, community health organisation west, and Professor Malcolm MacLachlan, clinical lead for the national clinical programme for people with disabilities.

The UNCRPD requires that the rights and needs of people with disabilities are considered across all aspects of Government and its agencies. It reflects the shift from a medical, paternalistic model of service delivery, to a model where citizenship, rights, will and preference of the individual are at the core of policy and service provision. It puts the needs of people with disabilities at the core of public policy and the relevant service provision. It has at its core that people with disabilities are citizens with the same entitlements as all other citizens and it challenges states to make the necessary legislative, policy and funding decisions so that people with disabilities realise that citizenship, that right to an ordinary life.

The HSE welcomes the transfer of functions from the Department of Health to the Department of Children, Equality, Disability, Integration and Youth as being an important enabler in ensuring cross-departmental and whole-of-government approaches to ensure that people with disabilities have equity of access. HSE disability services are primarily focused on the specialist service needs of the 60,000 people with disabilities with complex needs requiring specialist services based on individual needs. Some 600,000 other people with disabilities do not generally need access to specialist services, but require access to mainstream services such as primary and acute care, older person’s services and so on.

The HSE corporate plan 2021–2024 commits to a vision of reimagined disability services to be the most responsive, person-centred model achievable with greater flexibility and choice for the service user. It will support people with disabilities to live a full life in the community with access to a range of person-centred community services and supports across their lifespan. Specialist services are provided within the context of Transforming Lives. This is the broad policy banner for a wide range of other policies, including, but not limited to New Directions, Time to Move On from Congregated Settings, neuro-rehabilitation strategy and implementation framework, personalised budgets, progressing children’s disability services and autism policy. It is important to note that even though Ireland did not ratify the UNCRPD until 2018, many of these policies were developed in the context of, and aligned with, the UNCRPD which has set the strategic and operational direction for the services provided by the HSE and by providers funded by the HSE.

In operationalising these policies, the primary activities of the HSE include more than 1,000 people who transitioned from congregated settings to community based living arrangements in line with promoting inclusion and participation in community life, as well as 19,000 people who avail of day services in line with the 2013 New Directions policy that outlines that all supports available in communities be mobilised so that people have the widest possible options for how they live their lives and spend their time. It places a premium on making sure that being part of one’s local community is a real option and recognises that people with severe and profound disabilities may need specialised support throughout their lives.

Progressing children's disability, PDS, is a significant programme of reform that changes the way we deliver services and supports for children and young people with complex needs through 91 children's disability network teams. The reform of services in line with the PDS programme is an integral part of Sláintecare health reforms and is a key policy commitment in the programme for Government. It provides a clear pathway and fairer access to services for all children and young people with disabilities based on their needs, ensuring that effective clinical teams work in partnership with families and education staff to support children and young people in reaching their full potential.

The personalised budgets demonstration project is an important initiative piloting a range of options for personalised budgets to inform Government decisions on the viability of various approaches in the future for those who wish to avail of them.

The national service plan sets out the HSE investment and reform programme year on year. The HSE welcomes the significant additional investment in disability services of in excess of €200 million over the past two years, which has been utilised to advance alignment with UNCRPD by increasing personal assistant hours to 1.7 million hours and home supports to 3.12 million hours; providing more than 8,000 residential places for those who need them and responding to urgent and emergency need but also developing planned options that prevent people from going into crisis; developing respite services and balancing increased centre-based respite with more innovative respite options, including intensive support packages, Saturday clubs, home sharing and contract families; establishing the digital and assistive technology committee to lead on the use of these technologies in promoting independence for people with disabilities; developing a neuro-rehabilitation service with ten additional beds in Peamount and two community network teams being established initially; increasing the number of staff in the children's network teams by 285 with a commitment to significant further development in 2022; and establishing the integrated steering group to oversee implementation of the recommendations of the Ombudsman’s report on under-65s inappropriately placed in nursing homes.

The HSE has embraced the "nothing about us, without us" concept of participation through a number of committees that have lived experience representatives and the establishment of a project to ensure that people with disabilities are fully included in decision-making and policy-setting within the HSE.

The national clinical programme for people with disabilities was established in 2020 with a specific remit to ensure the UNCRPD was implemented in disability and cognate clinical programme services. Its governance structures explicitly reflect this. There is also a focus on assisted decision-making implementation. The HSE recognises that the 2022-24 disability action plan that is being developed will be instrumental in shaping disability services and aligning them further with the convention.

I acknowledge the commitment and dedication of staff, non-statutory service providers and partners in the work they do each day in providing supports and services. The response shown in the face of Covid-19 and in pursuing a wide range of reforms gives us optimism for the future. I also note the increasing challenge of staff availability at the same time as the increasing need for well-trained staff to meet the emerging needs in the most appropriate settings. The HSE and its funded agencies have made significant progress while also acknowledging the areas for continued focus.

We are happy to address whatever questions the committee wishes to ask.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I thank Mr. O'Regan. Before I go to members, I am aware that a large number of issues will be raised. If necessary, could more detailed information be forwarded to the clerk for circulation to members? We will know as the meeting goes on whether that is necessary.

Erin McGreehan (Fianna Fail)
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I wish everyone a good morning and thank the Minister of State and Mr. O’Regan for their statements. The Minister of State is welcome and I congratulate her on her work and advocacy in her role so far. I also congratulate her on the Government’s approval this week of the assisted decision-making (capacity) (amendment) Bill. It is an important issue that this committee has been keeping an eye on and for which we have been pushing.

Although there are many issues to discuss, I will start by focusing on just one, that being the transfer of functions from the Department of Health to the Department of Children, Equality, Disability, Integration, and Youth. What is the reason for the delay? Has the delay helped or hindered the Minister of State in her role over disabilities? What about the budgetary handover as well as the transfer of accountability? When can we expect to see the Bill being published?

Anne Rabbitte (Galway East, Fianna Fail)
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I thank the Senator for her questions. Members and everyone watching this meeting would like to know when the transfer will take place. The Cabinet has approved the draft heads of the Bill handling the transfer. When I was asked to become Minister of State with responsibility for disabilities, I was asked to move the area out of the Department of Health and into the Department of Children, Equality, Disability, Integration and Youth. There is a €2.2 billion budget, so it is not as simple as walking out one door and in another. It is complex, not only in terms of staffing, but also in terms of the people whom we support, our arrangements with the HSE and our memorandums of understanding. I thank everyone for being patient and allowing us to get to the point of the Cabinet approving the draft heads of the Bill. The legislation will be drafted based on those heads and be laid before the Houses.

There are two important points to make about the transfer. First and foremost, it has not impacted whatsoever on the delivery of services. The reason we are transferring is to focus on the equality, inclusion, integration and rights pieces. We all have health issues regardless of whether we have disabilities. The area of disability is being transferred into the Department of Children, Equality, Disability, Integration and Youth to ensure we are looking at it through the lens of the UNCRPD. Our vision is to have the transfer of functions done by the end of next March and for all budgetary positions to transfer with me so that by the time I arrive in the Department, the money and staff will have transitioned across. The element that used to be in the Department of Justice has already transitioned.

Mr. Niall Brunell, who is joining me on the call remotely, is from the Department of Children, Equality, Disability, Integration and Youth. In terms of the State draft report, decision support services and the legislation's drafting, I am operating as a Minister of State within two Departments. I have functions within the Department of Health but I am operating within the other Department through the lens of inclusion and integration and with a view to people with disabilities. March is the deadline and funding is coming but services have not been impacted. We and the HSE have a good working relationship and the memorandum of understanding is being prepared. The complexity of this will see two Ministers liaising with the HSE on the delivery of services in future. It is a smooth transition and I can see it all happening. To date, everyone has worked well together.

If I had transitioned on the first day, I would have missed the opportunity to understand the integrated role and value of primary care as well as the role of aids and appliances and the complexities in that respect. That is what I have learned. Once my memorandum of understanding is approved, I will be transitioning in the full knowledge of what we cannot leave out.

Erin McGreehan (Fianna Fail)
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I thank the Minister of State for her comprehensive answer. This is an important issue. She mentioned the level of budget that was being handed over.

What will that bring to the Department of Children, Equality, Disability, Integration and Youth as regards its budget? I imagine there is a huge oversight change in the Department relating to that huge budget. How do the two budgets compare?

Anne Rabbitte (Galway East, Fianna Fail)
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Currently my budget is €2.2 billion to €2.3 billion and the whole purse in relation to disability is coming with me to the Department of Children, Equality, Disability, Integration and Youth. It is a huge budget that is coming into that Department. The Minister, Deputy O'Gorman, will be the senior Minister with oversight. We will double the budget within the Department of Children, Equality, Disability, Integration and Youth. The full funding and staffing will transfer across to meet the needs of the expansive role of having the lens of working with the HSE and having inclusion, equality and participation.

Mary Seery Kearney (Fine Gael)
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I thank the Minister of State and the HSE for being with us today. I note that in the Minister of State's speech she referred to doing ordinary things and living ordinary lives. That was a theme from one of our participants a number of weeks ago. I have used it in speeches with the Minister of State since and it demonstrates that she is listening to the witnesses of our committee and to us. I appreciate that and it is really good.

Senator McGreehan has talked about the transfer of functions. Another passion of the committee, and one we are united on, is the ratification of the optional protocol. I appreciate there is probably a disparity between the desire to get it in place and the Government's cautious approach of making sure everything else is in place before ratifying it, so we have a chicken-and-egg debate going on. I ask the Minister of State's position on it, though I think we already know that. What is going on with regard to the implementation of the UNCRPD? What is happening on the ground? Who is driving that? Is it the Minister of State, who is our dedicated Minister for disabilities?

If I have time, I have questions for the HSE on autism and the letters that go out to families about their child moving under PDS and children's disability network teams. Those letters tell people they have up to 40 or 48 months of a waiting list. Are the people drafting those letters engaging with the seriousness of what is in them? Do they consider the impact on a family receiving such a letter?

Anne Rabbitte (Galway East, Fianna Fail)
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I thank the Senator. I am repeatedly asked about the UNCRPD and the optional protocol. It is a programme for Government commitment. However, when we did the programme for Government we were in a space where we had sight of a timeline for going before the UN, which was mid-2022. That does not seem to be the timeline at the moment. The Minister, Deputy O'Gorman, and I are still committed to ratifying the optional protocol, even before it has been seen by committee, for a simple reason. As I said last week in the Dáil, we must ensure all Departments are on line so we can exercise all options. When I talk about exercising all options, there are certain things we as a state need to ensure. If people take their actions further when it is fully ratified, we will need to have all the State mechanisms in place.

The Senator asked a valid question about whether I am doing all this myself. Absolutely not. I am working with the various steering groups, including the disability steering group, and the national disability inclusion strategy, which is made up of parents, carers, academics, advocates, designated public officials and umbrella organisations. The current iteration of it is the fifth disability stakeholder group, or DSG 5, and we are in the process of formulating DSG 6. That is where members of disability steering groups sit with representatives from all Departments. I chair it on a quarterly basis. That is one part of the umbrella. Under that, each Department has a disability committee, where they meet regularly with members of the disability steering group. That feeds into and formulates the policy to ensure every Department is working at pace and, when the report is lodged and submitted, the State is in a position to ratify the optional protocol. That is where we are working on that at the moment.

It is important to note the legislative work going on in relation to the decision support services and the decision amendment Bill that is coming before us. These are crucial pieces. Wardship is being abolished. There are many layers within it. Everybody is working in a parallel process to ensure that we get the State report submitted and that we are then on track to have decision support services operational and in a position to ratify the optional protocol. "Nothing about us, without us" is the method of it and that is where I am working with the various groups. Does that answer the question?

Mary Seery Kearney (Fine Gael)
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I am thrilled that people with disability voices, who are best educated to talk about the lived experience and to influence that, are being listened to and are influencing Department representatives. I assume they meet more than quarterly. The Minister of State said she chairs it quarterly, which implies there are other meetings. How frequently do they meet?

Anne Rabbitte (Galway East, Fianna Fail)
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They could be meeting monthly in some cases. Education meets frequently, as do justice and social protection. There is not one Department that does not show up to the national disability inclusion strategy quarterly meeting. The engagement of the Department representatives who attend with the DSG is wholesome, practical and about what they are doing. This is an opportunity for the umbrella organisations, parents, carers and designated public officials to hold Departments to account. They come before me quarterly and, in the meantime, they meet to work through what they have set out as their goals for the next quarter with various officials. This is at a high level and feeds into circulars and implementation plans. It is no different from how policy in the Department of Health filters across to the HSE and how they deliver it across various community and network teams. It is the same for education and justice.

I talk about the Office of Public Works, OPW, all the time because we have the most fabulous monuments but sometimes we cannot access them. That is a clear practical piece. The role the OPW has played for me has been heartening, as has the role the Department of Housing, Local Government and Heritage has played. We have seen how that has fed in to the recent Housing for All policy document. There is a section on disability and that is because persons are participating from Departments and the DSG.

I have to give the shout-out in relation to employment. We have a comprehensive employment strategy but, while we have people from the Tánaiste's office participating, we all know employment is a huge issue.

The Senator can see there is an emphasis on a cross-departmental, whole-of-government approach to ensure that when the State report is lodged and the Minister, Deputy O'Gorman, and I want to bring forward the enacting of the optional protocol, each Department is up to speed and in line.

The most important thing is that the system is in place to ensure that all systems work.

Mary Seery Kearney (Fine Gael)
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That is great. If there is time for the HSE to reply in respect of the letters, I would value that.

Mr. Bernard O'Regan:

Those letters are certainly considered. The reason they are issued in the way they are is to be compliant with the Disability Act and to link to the service statements. We have to provide a factually accurate estimate of when a service might be in place based on the point in time at which the letter is being written. In order to address that, with the substantial investment in additional posts, the restructuring of the service into the children's disability network teams and the building in of the requirement that service statements are reviewed on an annual basis, we will look to improve that situation over the coming year in order that those letters are followed up by additional letters that improve the timelines for people. We are very conscious that when those letters issue to families it is not reflective of the direction and model of service we are working very hard to be able to implement, which is around people being able to access essential therapy services as soon as possible.

Mary Seery Kearney (Fine Gael)
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That is not indicated in the letters. Nobody sees that. Another side of it is that where parents are engaged, there is such a turnover of staff that parents start all over again with the next person they are dealing with. People go on leave, which they are entitled to do and I am not in any way commenting on it, but no replacements are put in for them. There seems to be a difficulty in recruiting people for short-term placements to cover maternity leave, parental leave or whatever permutations of leave are required. Whole spaces of time go by where there is no service, then someone else comes in and that parent, or organisation, has to go back over the whole story. It seems that there is a mismatch. On the one hand, one cohort of parents is receiving these letters, they are then operating and sharing information in communities, which then state that this is what will happen, and parents have this process repeat, they have to start all over again and tell their story again. There does not seem to be a handover of files or a centralised understanding for each child, with his or her plan and access to information. A parent should not have that disheartening thing of "Oh God, here we go" and the process starts again. We need to hear how that is being planned around.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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We will move on. There will be opportunities to come back on those issues.

Holly Cairns (Cork South West, Social Democrats)
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I thank the Minister of State and the HSE representatives for coming before the committee. Their opening statements made reference to the progressing disability services programme intended to reform services and supports for children with disabilities through the creation of the children's disability network teams. In particular, Mr. O'Regan's statement claimed that the programme provides "fairer access to services ... based on ... needs, ensuring [that] ... clinical teams work ... with families and with education staff to support children and young people", but I have to conclude from the accounts of multiple parents who have explained their situations to me, and those of people who come before the committee, that progressing disability services is currently a failure. It is as simple as that.

In September, 41 children were waiting for initial contact with the west Cork children's disability network team, CDNT, 11 of whom have been waiting less than four months, while 30 children have been waiting between four and eight months. To give one example from the very many constituents who have contacted me about this, one child with autism spectrum disorder has received one hour of occupational therapy and one and a half hours of speech and language therapy in the 15 months since the child's assessment of needs. Some families can afford to pay for this privately but when we are talking about early intervention, it should not come down to who can or cannot afford it.

The committee has discussed a case in Cork where young people will not be able to access spaces in special classes in secondary school because the CDNT will not be able to make the recommendations in time. I know the representatives cannot discuss individual cases but I am citing these as evidence of the failure of the progressing disability services programme to date. I do not expect the HSE representatives to comment on individual cases but the teams obviously are not sufficiently staffed. Promises of staffing next year are not good enough for the children who needed interventions yesterday, or 15 months ago, not to mind over the coming months. Staffing next year will not address that.

I have a long list of constituents who have major issues with the shortcomings of the CDNTs, as I am sure all public representatives do. I will contact those constituents later today with the HSE response. What, if any, assurances can the HSE representatives give that these issues will be addressed? The HSE previously offered the committee a visit to a community children's disability network team, but it was one of its choosing. I have been trying for months now to meet the west Cork CDNTs. I ask the Minister of State to help me arrange that.

Mr. Bernard O'Regan:

I thank the Deputy for her question. I will invite Professor MacLachlan to also comment on it. The nature of the reform and change we are engaged in as regards children's disability services is very significant and is one of the most significant reform programmes. The reorganising of the children's network teams, which will be completed this year, is a major shift in trying to reconstruct how services are delivered in order that they are fair and equitable. That has to be accompanied by expanding the size of those teams and increasing the staffing on them. Significant additional posts were allocated for this year, which are being put in place. There will be additional increases next year, but it is also about introducing new ways for those teams to work, such as the standard operating procedure we have introduced in order that people can have their needs assessed as expeditiously as possible and that we can get into the space of intervention and aligning it with the assessments that need to happen.

This is one of our most significant priority areas. Colleagues in community healthcare organisations, CHOs, CDNTs and nationally are working in alignment with one another to effect the changes that are needed. It is in order to make sure that we have a system in place where the kinds of issues the Deputy identified become redundant, we have a service model that is easily accessible, one that is not reliant on families having to use resources in order to access private services, and that the system is equitable. Professor MacLachlan might want to comment further.

Professor Malcolm MacLachlan:

I thank Deputy Cairns for her question. We all share the frustration expressed by her constituents. It is one of the reasons we have been motivated to develop a completely different approach to providing services to children with disabilities. As she knows, the basis on which people previously accessed services was often to do with the area they lived in, what school they attended, how rich they were or the nature of their disability. The design of the CDNTs is supposed to create a situation where there is equal opportunity of access.

I suggest that the PDS approach is working. For instance, in considering the preliminary team analysis, which is being incorporated as part of the assessment of needs procedure, an intervention is immediately recommended for 86% of the children assessed through that process. To give the Deputy an idea, prior to the introduction of that standard operating procedure, people were sometimes waiting for four or five years for an assessment and there was a subsequent waiting list for the intervention.

We certainly acknowledge that the teams are not yet fully resourced. The Minister of State has been very successful in getting funding to support the resourcing of those teams. There is also a pipeline issue. We need more therapists across a whole range of different specialties. Unfortunately, it is not a matter of us being able to immediately resource all teams fully. We need to identify the pipeline of producing and educating people and not merely in the traditional approaches that have been taken.

The CDNTs are very much focused on the ethos of the Convention on the Rights of Persons with Disabilities, CRPD, which emphasises interdisciplinary working and moving away from a sort of deficit medical model and so on. That also requires a change in work practices among the various clinicians. We share the Deputy's frustration but we are committed to the idea that this is the right way forward. It is certainly compliant with the CRPD and I submit that it is already showing very encouraging results.

Holly Cairns (Cork South West, Social Democrats)
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I will quickly respond, if I may. I cannot say that I can see those results on the ground yet. It is not the experience of families. Professor MacLachlan stated the design is for equal access and that it is working, but it is not. That is not the experience of families. As I stated, there is a family who got a diagnosis for their child 15 months ago and have received, overall, two and a half hours of essential therapy. Professor MacLachlan referred to the previous five-year wait. That is an incredibly low bar. The case to which I refer is pre-assessment of needs. He referred to more recruitment of therapists next year. The reality is that nothing will change in the next year. People will continue to wait and will have to pay privately, so it is not equal. Only people who can afford to pay who are getting the services. Are we at a point where we need to, at the very least, be honest with families in respect of the wait they are facing, rather than those families just being kind of fobbed off by the CDNTs and not hearing back from them, with all the energy and effort that goes into trying to get these services when they are literally not available? Is it high time to at least acknowledge that and, in the meantime while staffed teams are being built up, maybe consider supports that could be provided in the context of subsidised care in the private sector because that is the only option that people have at the moment? For some people, it is not an option because they simply cannot afford it.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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Does the Minister of State wish to come in?

Anne Rabbitte (Galway East, Fianna Fail)
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I will allow the conversation to finish and then come in on a question asked by the Deputy.

Ms Breda Crehan-Roche:

I thank Deputy Cairns. As regards the children's disability network teams, this is a significant Government change and change programme. There will be 91 teams in operation by the end of the year. Some of them are already in operation. For example, this has been ongoing in CHO 3, covering the mid-west, for several years. The teams will be there. It is not an excuse but there is no doubt the pandemic has affected delivery. Yesterday, I chaired a meeting. The information we saw was very encouraging, as my colleague, Professor MacLachlan, just stated. The whole premise of the progressing disability services programme relates to putting the child and family first. It is very much a move away from the medical model. When the teams are operational, there will be local implementation groups. Families are very much part of that. It is important that they have a voice and it can be heard. If there are issues, we need to address them.

I acknowledge the commitment of the Minster of State and the Government to this programme. The resources provided have made a significant difference and will do so in future. We are very aware that these are children's formative years and so important. We are working closely with our colleagues in education. The good news is that the 91 children's disability network teams are coterminous with the primary care teams. That is really important because, in the context of therapists and so forth, my colleague, Professor MacLachlan, referred to the fact that we need to train more therapists and retain them. The commitment from the Government and the additional funding will certainly help in that regard. There is a significant amount of change and we are seeing good progress. We need to be in partnership with families because we recognise that the family knows their child better than anyone. The Deputy is correct that we need to have that honest conversation. We will see more of that as we go on. There is certainly great commitment, passion and energy around the whole progressing disability services programme. A very different picture will be seen next year as the teams bed down. We are currently seeing significant progress. Although we cannot comment on individual cases, I am sure my colleague, Mr. O'Regan, will take that up with the CHO in question and the head of service there.

Anne Rabbitte (Galway East, Fianna Fail)
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I thank the Deputy for her question. She asked me a direct question. She asked whether I can help her to set up a meeting. I will bring her up to speed. I am currently meeting with the lead agencies. In CHO 4, the main leads are Enable Ireland, CoAction and COPE. Ms Crehan-Roche will correct me if I am wrong. We do not have any HSE organisation in CHO 4 delivering services; my understanding is that it is all outsourced to those lead agencies. I visited Cork in July but to address the particular point raised by the Deputy, I am meeting CoAction, which covers the area to which she referred, as a lead agency on 9 December. I have no problem raising the queries the Deputy has put forward and about which I will meet her to discuss after the session. I also have no problem in going down to west Cork to meet a group if that would help to facilitate or alleviate the issue. I have no doubt that Ms Crehan-Roche would ensure any supports I need from a HSE point of view will be put in place to facilitate my going down to west Cork. There are many pieces to this puzzle. I am clear in my commentary on this. Communication is the most important piece with parents. There is a need for up-to-date communication. I think it was Senator Seery Kearney who stated that sometimes the line in the paper does not truly reflect where things are at. I will meet CoAction on 9 December. I have no problem facilitating a meeting with the Deputy in west Cork or taking up the particular issues she has on her desk. We all agree that 15 months is a long time. We will try to get to the nub of the problem.

Holly Cairns (Cork South West, Social Democrats)
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I thank the Minister of State. I really appreciate her offer and I look forward to the meeting. I welcome that the HSE is considering having that kind of honest conversation with families, rather than allowing them to be consistently fobbed off by the system when there are not sufficient numbers of staff in place, as is currently the case, and we are looking at next year. In the context of the allocation of staff, I wish to highlight that an area of which I am aware and which has a big population has an allocation for the CDNT of the equivalent of 0.5 nurses. We need to be more ambitious in terms of staffing allocations if our hope is that this issue will be rectified next year, when, as Ms Crehan-Roche stated, all the staff will be embedded and bedded down and all that stuff. I do not see how half a nurse will be sufficient for a network team to service an area. All of these promises have been made to have all the staff and everything set up next year, but if there still is not enough staff allocated, we will be back here having the same conversation again. I wish to highlight the issues in respect of the allocation of staff going forward. The families with whom I have been dealing will be disheartened they will not be getting the service until next year but they would prefer honest engagement in respect of the fact they will not be receiving it until then. We need to consider supporting families who need help to get the private interventions they desperately need. Those private interventions cannot wait.

Neasa Hourigan (Dublin Central, Green Party)
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I say "Good morning" to our guests, particularly the Minister of State. Her passion for this subject and her grasp of the issues is always very heartening for the committee. There is another area I wish to ask about but I will first pick up on the issues raised by Deputy Cairns. I have a specific question in that regard. Examples have been given of people's lived experience. Every day when I drop off my children, I meet a mammy at the gates who really needs occupational therapy for her six-year-old boy. Obviously, she would prefer to receive it in the public system and can ill-afford to pay for it privately but she has been prepared to do so. She cannot find anybody in the Dublin area who will take on her child and is on a waiting list for a private occupational therapist in Naas. That is the reality of how difficult it is to find a person to do that kind of early intervention.

The Minister of State spoke about interaction with other Departments, including in the context of Housing for All. Has there been interaction with the Minister for Further and Higher Education, Research, Innovation and Science, Deputy Harris, and his Department on how we can open up that pipeline and ensure that we have suitably trained service providers? It seems that not only are those people not in the public system, they are not in the country.

Anne Rabbitte (Galway East, Fianna Fail)
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I thank the Deputy for that question. She is dead right. If I had all the money in the world in the morning and I wanted to hand it all over to the HSE, we could not recruit because the people are not there. There is an issue with the supply pipeline. We are all drawing from the same pool of people. I refer to the gamut of services, including primary care, private practice, disability services, services for older people and acute services. We might have only 400 occupational therapists coming through on an annual basis and they have the pick of the services. Hence, there is movement of staff from disability services to primary care to acute services. People can move up the ranks quickly because there is a such a shortage of staff. The Deputy asked whether that conversation happened. The answer to that question is "Yes". Was it productive? It was, very much so. I have also met the leads in the areas of occupational therapy, physiotherapy, CORU and the universities to engage in this conversation. There is an appetite to increase the numbers and to work more closely within health to provide work experience, give people the opportunity to participate and to provide longer placements. That could be used as a buffer while we are bringing more people on stream.

If I had my wish in the morning, I would like to recruit individuals from the various faculties who could populate my PDS teams. I could have an additional speech and language therapist who could do an extra placement with clinical supervision. Professor MacLachlan might comment on that with respect to occupational therapists, physiotherapists and speech and language therapists. I would have extra people in our services. A positive aspect of that is it would give them good experience and, hopefully, they would consider returning to work in disability services. Perhaps we could then consider bringing in alternative grades of progression to retain people in disability services. There must be a career pathway within our teams. We have not even got to the stage of having that conversation because we are work to ensure we have enough staff to fill the vacant posts.

We are losing staff to our brothers and sisters in the HSE, be it in primary care services, services for older persons or acute services. We need to increase our capacity in terms of our intake of people and I am having that conversation. Professor MacLachlan might like to comment on the provision of work experience, similar to what is being done with third-year and fourth-year student teacher who gain experience as substitute teachers. We would have more of an intake to have those people within our teams. It would help our capacity in the context of delivering services.

Professor Malcolm MacLachlan:

I agree with everything the Minister of State said. Deputy Hourigan hit the nail on the head in that there is a great need not only for more training but also to train people in different ways. The Minister of State alluded to the importance of interdisciplinary training. Having been involved in training, I can advise the Deputy that, conventionally, people are trained in fairly narrow ways within their own disciplinary blinkers, so to speak. When they qualify, they have to learn how to work effectively with other disciplines. We need to adopt a radically new approach to the training of people. Such an approach would ensure that those training to be occupational therapists, speech and language therapists, psychologists or whatever would all train together from the get-go and when they graduate, they could hit the ground running and know how to interact with other people effectively. There may be opportunities for direct placements in the final parts of people’s training to support the children's disability network teams, CDNTs, more effectively.

The Minister of State mentioned the importance of people having a career path. Much work could be done in that area. One aspect of this approach is encouraging. Because we are offering people the opportunity to work in interdisciplinary teams, we will not have the situation we had some years ago where a person who graduated, say, as an occupational therapist might have worked alone and that could have continued for ten or 15 years. Now, people will be in a more supportive environment where they will be able to be more effective in delivering services. We want to strongly convey that disability is a great area in which to work. This is a very exciting time to come into it. Considerable investment is being put behind the whole ethos of the PDS and implementing the UN Convention on the Rights of Persons with Disabilities, UNCRPD.

Neasa Hourigan (Dublin Central, Green Party)
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I thank the Minister of State and Professor MacLachlan for those responses. I am going to sidestep into another area, although it is related to multidisciplinary primary care and all of that. I want to raise the issue of home care supports and their availability. There is a commitment in the programme for Government to statutory home care provision. If people have a chronic illness or long-term disability, the level of training home care workers would benefit from is quite important. As we move towards implementing that statutory entitlement and the provision of more home care hours, what training is being set out for those who work in that area?

Given some of the reports we have seen in recent months covering the sad and distressing incidents that have occurred, do the Minister of State and the HSE recognise the need for safeguarding legislation? What do they envisage to be the interaction between largely privately supplied services and community healthcare organisations, CHOs, as we move towards the implementation of Sláintecare? What is their view on the need to be able to interact in a dynamic way? I hope home care will be a major provider and support for people into the future. If it is to work, it will need to have quite dynamic access to services and integrated communication between that service and the primary care system. How do they envisage that might work?

Anne Rabbitte (Galway East, Fianna Fail)
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I thank the Deputy for that question. The Minister of State, Deputy Butler, who has responsibility for older persons, is leading the work on the safeguarding legislation. I met her as recently as last night to discuss the matter. I will be feeding into that process. I will be focusing on the legislation through the lens of disability. Before coming to this meeting, I confirmed that there will be funding for it from our side to ensure that we are feeding into the work on it from a policy point of view. The Minister of State, Deputy Butler, is leading on the legislation but she will not be all alone in that task. We will be supporting her in respect of it. I welcome any work that is being done on that legislation.

The Deputy is correct in what she said about the statutory home care scheme. We need to train people and provide them with particular skill sets in order that they can deliver home care and home support. If training is required, it needs to be at that level. We are dealing with people who have various issues and we need to be able to react appropriately.

We cannot use the same brush to cover all individuals who are in receipt of home care. We have increased funding for it. I would like to hear the HSE's response in this respect. The answer to the Deputy's question on this scheme is "Yes". We need to have varied proper training and a more uniform delivery of statutory home care provision. This relates to a memorandum of understanding on the integration of services between older persons and disability. If the Minister of State with responsibility for older persons is leading this scheme, we need to ensure the approach is not such that a person seeking support would be told they are not old and therefore that person will not get it and that a person who has a disability will get that support. We should not make that differentiation. We should recognise it but there should be a good relationship to ensure that families should not feel they are in a particular category.

Ms Breda Crehan-Roche:

I thank the Deputy Hourigan for that question. With regard to home support, I very much welcome the Government’s commitment to home support and home care packages. There has been great investment in it, which is welcome. That is fantastic. We are finding it difficult to recruit workers. We have the money to recruit but it is matter of getting the people. We need to consider innovative ways to recruit. We are competing with the private sector in this area. Sometimes we recruit and as a result of that the private sector loses people. We must make sure the service users are looked after.

On assessments, there is a standard assessment tool. InterRAI is also being used in respect of older persons. As chief officer of CHO west, I have responsibility for people with disabilities. I also have responsibility for older people and for a number of other community supports. We are excited about all of this. In terms of the market, we need to consider how can we recruit and retain people.

The big thing is this is around Sláintecare. This is Sláintecare in action. This is about enabling people to live their choice, their will and preference to live good ordinary lives in their community. We are working with them to do that. Sometimes the funding is there. Unfortunately, the manpower is an issue and we have to start looking at that now. There are all kinds of innovative ways of looking to do that, but certainly it is the bedrock of community. Where people want to live in their homes, we need to be there and support them to do that. That they will direct that care is the important part.

In answer to the question, there is a standard assessment tool. That is for equity and fairness. That would be based on need, which is fair. It is very much based on will and preference and that the person will be enabled to live at home in his or her own home if he or she wishes to do that.

It also applies to some of the people under 65 who are inappropriately placed in nursing homes. With the packages of care, the Ministers of State, Deputies Rabbitte and Butler, are passionate about this area. There has been significant investment and I commend and congratulate the Government on that. It is certainly the way forward. It is around avoidance of hospitals as well. Sometimes people go into hospital who would not if there was that home care package.

It is an exciting time. We are here discussing disabilities today, but I would say the enhanced community care and the integrated care programmes for older persons are about keeping people out of hospitals, helping them to live their choice of life, looking at their needs and enabling them in their will and preference to do that. Certainly, the resources are there. Manpower is an issue.

Neasa Hourigan (Dublin Central, Green Party)
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I agree with Ms Crehan-Roche that it is progressive and encouraging that we will move towards more home care, but where home care is provided by a private entity, I have a concern about the interaction between the private entity and the community healthcare organisations, CHOs, or Sláintecare. A privately supplied employee might not be aware or have suitable training to allow the person whom he or she is supporting to access further services. If the person that employee is supporting needs occupational therapy, for example, through the public system, we need to ensure the training is good enough that a privately supplied care worker has the full complement of information to be able to access those primary care services. I want to flag that for people.

I have a quick question for the Minister of State, Deputy Rabbitte. Has there been any consideration within her brief of the issue of long Covid?

Anne Rabbitte (Galway East, Fianna Fail)
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There has. I met with the Minister, Deputy Donnelly, on this. We have done some research on long Covid as a disability but I can go no further than that today. "Yes", is the answer. There is work going on behind the scenes on that.

Emer Higgins (Dublin Mid West, Fine Gael)
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I thank all of our guests who are here. I thank the Minister of State, Deputy Rabbitte, in particular for all the updates she has given us thus far.

I would like to ask the Minister of State for information on respite, in particular, when it comes to decongregation of residential respite. I work closely with Stewarts Care in Palmerstown which offers incredible residential and holistic care to people with disabilities who need support to be fully independent.

Many of my constituents have children with special needs, some of whom may be adult children who would benefit considerably from respite care. When you look at the assessments of need that are being carried out in my area of CHO 7, the demand for assessment is considerable. Approximately 50% of those assessments are coming from requests for children who may have autism. Looking forwards, that is a significant allocation of resources when it comes to future-proofing for their needs. In particular, I am thinking of those children going through the system of assessment who in the coming years would benefit, as would their families, from residential respite care.

This is something that has been committed to from a decongregation perspective under the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, and in the programme for Government. It is also important given the ageing population we have and how many adult children with special needs rely heavily on ageing parents. That is the backdrop to my question. Perhaps the Minister of State would give me some detail on what progress is being made by her and her time at the HSE on this.

Anne Rabbitte (Galway East, Fianna Fail)
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I thank the Deputy for that question. On decongregation, there were 144 persons assisted to be decongregated in 2021, 143 are planned for 2022 and there were 126 in 2020. That is the pathway in relation to decongregation.

When we talk about decongregating, we are always looking at the challenges within it. These are not only the properties but the moving of people who in some cases have complex needs. I refer to the transitional piece of coming from their current home and going to their new home and the need for extra staff to allow that transitional care piece to take place. For example, St. Patrick's in Kilkenny did it very well and very successfully with the support of the HSE when the pandemic was at its highest. Housing is a significant issue in that regard. There is steady progress all the time. I would like to be more ambitious. Under the disability capacity review, our action plan and our framework, perhaps we will see a more accelerated pointed approach to achieving what is expected of us because we have to acknowledge that we have people living in settings that are not suitable.

The Deputy's next question was on respite. It is something I talk about constantly. It is one of the core pieces within the programme for Government and my Ministry. The HSE and the Department are supported in recognising that. I have to recognise the Ministers, Deputies McGrath and Donohoe, for funding me for the simple reason that I need to create capacity. The Deputy is correct. We have different levels where creating capacity is needed.

The Deputy has spoken specifically to the layer relating to autism where we have behavioural challenges. In fact, due to other sensory needs, such as noise, it might not be possible to use a respite house. Normally, it might be for four people, but if there is somebody with very high behavioural needs, it might not be possible to have it at full capacity. We are looking at more innovative alternative ways. I visited Swords recently and was heartened to see the development they had there. They had a fabulous respite house which I officially opened, but when they were showing me through, they brought me to the back end - the annexe - which had its own front door where, in fact, it would support an individual who had autism or high-functioning needs. While it could be part of the house, it was separate.

It is that piece of modelling that I highlight. We have to become more innovative. We need to look at creating that layer within. I recognise parents need that support. That is why we have 10,000 additional respite bed nights built in to 2021 and we will see more coming on in 2022. What we will see in 2022 is the guts of another nine respite houses coming on, two of which will be for children with complex needs, with one for those with Prader-Willi syndrome. We will see then, depending on the demographics and the needs of the area, where we are with that piece of alternative respite to support people with autism.

I was fortunate in the budget this year. I will have a pilot project coming on to look at where the key performance indicator, KPI, is not always death but is instead that serious emergency, and that is with a view to supporting ageing families. I thank the Department for its support on it, and the HSE with which we are engaging in that conversation. The pilot is about how we can have that lower level intervention to support people to live within their communities but that is more supported independent living. They can still attend day service, they can still attend work but they need that oversight. The families I think of need to have the peace of mind that their family member has transitioned to move on. Does that answer the question?

Emer Higgins (Dublin Mid West, Fine Gael)
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Yes it does, thanks. I commend Stewarts Care in Palmerstown in my constituency. It is leading the way in the context of what the Minister of State has just described.

It is great to hear about nine new respite houses coming on stream. The Minister of State may not have the information to hand today but I would be interested to hear about the geographical spread of those houses. My sense of things in CHO 7 is that we are underserved and whatever additional resources we can get for children's services like occupational therapy, speech and language therapy as well as residential and respite care would be greatly appreciated. Such services are greatly needed and I am glad to have the opportunity to put that on record. I thank the Minister of State and ask her to provide more information on those nine respite houses if possible.

Anne Rabbitte (Galway East, Fianna Fail)
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I believe a respite house has already come on stream in CHO 7. It is a children's respite house. I do not know the exact location but will revert to the Deputy on that. Regarding Stewarts, I met a representative of the organisation yesterday, Ms Deborah Jacob, to discuss CHO 7 and we had a good conversation about our children's disability network teams. I am hoping to have further discussions with CoAction on 9 December to understand how many children are on their teams, the staffing capacity, the staffing shortfalls and the sick leave and annual leave situation. I want to find out who is in the red box category, whose files have been opened, who has received a phone call and who has received nothing at all. I plan to get into that level of detail because when we have the information, we can inform parents. There must be a collaborative approach between the lead agencies, the HSE, public representatives, parents and the Department, and I will do my duty in terms of threading it all together. Yesterday was my first experience with CHO 7 when I met Ms Jacob and Stewarts Care and I thank them for their support.

To answer the Deputy, there is a respite house in CHO 7.

Emer Higgins (Dublin Mid West, Fine Gael)
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They are a great team and we have high hopes of them delivering additional services in our area.

Mr. Bernard O'Regan:

Just to expand on what the Minister of State said on respite, it is very important in the context of the convention that we are developing respite services and are approaching it in a very comprehensive and broad way. We are building centre-based respite services that we know are really valued by families and which afford them essential breaks. We are complementing that with other respite options as well so that in the future we are not just creating an assumption that centre-based respite is the only option and that residential services are the only option for people. We want to have as broad an array of options as possible for people, depending on their individual needs. That is the approach we are trying to take.

Seán Canney (Galway East, Independent)
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It is great to be at this meeting. I am going to change the emphasis for a few minutes, if I may. The Ombudsman issued his report this week on transport supports for people with disabilities, called Grounded - Unequal access for people with disabilities to personal transport schemes. This did not happen on the current Minister's watch or even on my watch. Approximately nine years ago a number of transport schemes that were in place to support people with disabilities were suspended and new schemes were put in place. The Ombudsman writes:

Living with a disability in Ireland in 2021 should never mean that a person is grounded in their home, unable to participate equally and actively in their community and in work. Another working group or action plan is not enough. Those people who are adversely affected by the current lack of access to transport supports require immediate and decisive action.

[...]

I hope this commentary provides a timely reminder to legislators and policy makers as to the urgency of progressing work so that we are not looking at this issue again in another nine years. Progress must now be quick and comprehensive.

I raise this issue in the context of the earlier conversation about the transfer of responsibilities from the Department of Health to the Department of Children, Equality, Disability, Integration and Youth. While that is going on, I fear we will have a situation whereby these schemes, which were being reviewed and redrawn in recent years, are left in abeyance until the transfer process is complete. Then the question is which Department takes responsibility for them. The Ombudsman is saying that two schemes in particular, namely, the motorised transport grant and the mobility allowance, are with the Department of Health. He also commented on the primary medical certificate scheme which the Department of Finance has been looking at since a Supreme Court judgment delivered in 2020. Work is being done on that scheme in an attempt to clarify matters following that court case. The aim is to develop a new scheme but that has been going on for quite some time. The Department of Finance has indicated that it is in consultations with the Department of Health on the matter.

Does the Minister of State know the current situation in that regard? Is it still stuck in the transfer or is somebody actually working on it in the Department of Health? Some people are getting no support while others have support. The situation is both unequal and unjust but it could be solved fairly quickly if we put our minds to it. I do not know who is responsible for this area now.

Anne Rabbitte (Galway East, Fianna Fail)
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The Deputy is correct that it is a function within the Department of Health. There are two elements to this issue. We all know the primary medical certificate function sits within the Department of Finance. The role of the Department of Health in the context of the primary medical certificate is to carry out the assessments through community-based primary care teams. The Department has an assessment function but does not have a funding function. The court judgment that was issued in June or July of 2020 clearly stated that the underpinning legislation needs to be looked at. The Department of Children, Equality, Disability, Integration and Youth has written to the Department of Finance to ask the Minister to start that review process.

Regarding the other two options within the Department of Health, a working group was established by the then Department of Justice and Equality under action 104 of the national disability inclusion strategy to review transport supports, encompassing all Government-funded transport and mobility schemes for people with disabilities, and that is ongoing. The Cost of Disability in Ireland study is another piece of the jigsaw. The two schemes to which the Deputy referred are the responsibility of the Department of Health, but conversations about them are happening with the Department of Children, Equality, Disability, Integration and Youth. Both Departments have been involved in a review over recent months.

Since I came into office, I have also met the Minister for Transport to discuss ways to expand transport schemes. We have discussed the deployment of new buses that meet our accessibility criteria. I have also been discussing the unequal piece to which the Deputy referred, whereby some people have the mobility allowance while others do not. I accept it is unjust and unequal but it is being reviewed. A new scheme is being prepared.

Seán Canney (Galway East, Independent)
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This is nothing to do with the buses. This is mainly for people who are unable to access public transport. The aim is to provide them with a vehicle they can use or which someone can use on their behalf to get them out and keep them mobile. My concern is that the Department of Health and the Department of Children, Equality, Disability, Integration and Youth are involved but it is not clear which Department will take the lead on the issue. When will we have a new scheme in place? That is what the Ombudsman is seeking. We need to get a new scheme up and running.

There are discussions about the other scheme going on between the Department of Finance and the Department of Health, but is the Department of Children, Equality, Disability, Integration and Youth involved as well? Which Department is taking the lead on it and which one will bring forward the schemes?

With the transfer from one Department to another, I am afraid these things will get lost in transit or be delayed because something has not happened where the Ombudsman is looking for urgent action.

Anne Rabbitte (Galway East, Fianna Fail)
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All policy options related to the mobility allowance schemes will fall under my remit on transfer to the Department of Children, Equality, Disability, Integration and Youth. All the policy options that are being examined by the Department of Health in tandem with the new Department are being reviewed with a view to introducing a scheme in the not-too-distant future.

Seán Canney (Galway East, Independent)
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It is good to hear it is under the guard of the Minister of State. I agree that is where it should be.

Anne Rabbitte (Galway East, Fianna Fail)
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Let me be very clear: primary medical certificates do not sit under me.

Seán Canney (Galway East, Independent)
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I am referring to the other two schemes. The primary medical certificate is a matter the Department of Finance. It is in conversation with the Department of Health, but it is important that the Minister of State's Department be part of the conversation.

Anne Rabbitte (Galway East, Fianna Fail)
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It is also important for me to be clear that, even with the new conversation and the assessment, the function concerning assessments and primary medical certificates is not transferring with me. That is under community care, which pertains to the acute settings. It will not be transferring with me.

Seán Canney (Galway East, Independent)
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I think it is important that this committee have some sort of input. We will have to consider that again.

We talked about early intervention. The Minister of State will know that when parents are told their child has autism or some other condition requiring supports, they find themselves in a haze because they do not know where to go. There is no pathway that they can follow. It is hard for them to get into the system. The information is very disjointed. There is no co-ordinator or caseworker to deal with them and walk them through every stage of what must be done. They are just told they will be referred to somebody else for an appointment. This has caused many problems and much anguish and stress for parents. Especially given the unknowns parents face, we should consider providing caseworkers that will bring them through the whole process and explain the reason for any slowdown in it. It is a matter of having a co-ordinator, caseworker or liaison person so parents will understand the process. Parents are often told things that go over their heads because they are so taken up by the fact that their child may have a special need. It is traumatic in its own right. It is important that we try to co-ordinate in this regard.

Let me refer to another area I find a little difficult. The recruitment process to replace somebody on maternity leave does not start until she is gone. This results in a gap. With a bit of planning, we could ensure replacements for those going on maternity leave or taking leave of absence are recruited in advance so as to have a smooth transition and a handover of cases to the person filling in. I find the gap frustrating. Maybe the Minister of State could consider tightening up how we manage these things. Parents find it very frustrating.

That is basically my commentary on the matter. I thank the Minister of State, my colleague from Galway. I thank Ms Breda Crehan–Roche and the other staff for the work they do, which I acknowledge.

Mr. Bernard O'Regan:

I thank the Deputy. With regard to case co-ordinators, we recognise that any supports we can provide to families as they try to navigate the system are really important. One of the pieces of work we are doing at the moment with colleagues is to develop the key worker role within the service teams so somebody will be assigned to families to play the role in question, recognising the importance of help with navigation for families.

The second thing we are doing, which concerns autism initially but which will relate to all areas of service provision, is developing the websites and information pathways for all users who need them, including families, staff and the public. The objective is to have easily accessible and clear pathways for accessing the system.

On the recruitment of staff, two points arise. First, on resources for backfilling, particularly in respect of short-term replacements, it can sometimes be a challenge for agencies just to get clarity on what resources they have available. We will continue to work to try to expedite decisions in that regard. Second, it is a challenge to fill temporary posts and backfill part-time posts when there are so many challenges in filling permanent posts. There is no doubt about that. It does impact on service continuity, unfortunately.

Anne Rabbitte (Galway East, Fianna Fail)
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With regard to the key positions of team leads in the PDS teams, the HSE made a submission this year on funding for maternity posts. They are being funded. We are taking a step forward in recognition of the role of key workers. Where there are team leads with full teams beneath them, we will be funding the maternity positions.

Violet-Anne Wynne (Clare, Sinn Fein)
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It is great to have the Minister of State and the representatives from the Department of Health and HSE here today. The Minister of State is undoubtedly playing a pivotal role in the new configuration of disability services.

I want to query PA services, the congregation, the optional protocol and the transfer of the portfolio. I will get straight into it. I would like to ask Mr. O'Regan about the PA service. He mentioned the additional budgetary allocation in the past two years of 1.7 million personal assistant service hours. He also mentioned a figure for home support hours of 3.12 million, which is almost double. Based on all the delegates' statements, the consensus is that the aim is to transfer disability services from a medical model to a social model. How does Mr. O'Regan envisage that happening when the majority of funding is still being funnelled into home help? Is it the case that he genuinely believes home help is aligned with choice and control and will and preference, or does he believe the PA service is more aligned with these principles? PA services offer disabled people what they want when and where they want it while home support provided by an organisation can at times be far more restrictive. The latter often dictates when someone gets up in the morning, eats, showers and goes to bed at night. Although all this is happening outside the confines of an institution and in the person's own home in the community, it is, in a way, institutionalisation. The services have a place within a broader regime of supports but can place limits on young disabled people's lives. It can be quite astonishing to hear at first hand that people are being put to bed at a time that is not suitable for them and with which they are not satisfied. How can we justifiably continue to fund the less empowering and perhaps less UNCRPD-aligned service when advancing alignment with the UNCRPD is the ultimate goal?

Could the Minister of State outline how central the PA service will be in the new configuration of interdepartmental services? How does she envision the shift away from paternalistic home help to a PA service that genuinely offers the choice, control and empowerment that are enshrined in the UNCRPD?

Regarding decongregation and specifically around funding, I would love to seek explicit confirmation on how many of the 18 congregated settings that were mooted to be transferred into community settings this year actually were. More critically, in a response to a parliamentary question, I was informed that between allocations for transferring under-65s from nursing and decongregation in 2021 totalled just over €7 million, of which only €1 million was spent. Can the witnesses commit to that €6 million in unspent funding being a roll-over and ring-fenced accruing amount that will not merge back into the €115 million additional funding announced for budget 2022? This is extremely important. If I take one thing from this meeting, I would like it to be that. The disability capacity review recommends that 150 settings be transitioned yearly up to 2030 if we are to truly decongegate. We have significantly missed the seven-year target set in the Time to Move On from Congregated Settings report. We are in a situation that is as bleak in terms of independent living as it was almost a decade ago. What funding and preventative measures are being implemented to stop disabled people being accommodated in these inappropriate settings to begin with?

The optional protocol is the elephant in the room. It has felt like that since the UN special rapporteur presented to the committee. He stated as clear as the light of day that the Assisted Decision Making (Capacity) Act and the decision support service were not prerequisites for ratification, as the Government has claimed. The transfer portfolio is one and a half years behind schedule and the personalised demonstration pilot is three years behind schedule. The Minister of State stated the transfer will be finalised by March of next year. Could she confirm that the optional protocol will be ratified at least by the second quarter of next year? I reiterate the special rapporteur's point that it should have been ratified at the same time as the convention was ratified.

The Minister of State said the transfer could have happened 18 months ago. If I am not mistaken, she said in the Chamber recently that she will not transfer the portfolio until such time as she has full access to the budget. This raises several questions. Having consulted my disabled persons' organisation, DPO, on the matter, it made the point that this decision was not necessarily within the remit of ministerial power. Regarding discussion with DPOs, as per Article 4 of the convention, I appreciate how complex the transfer is but I hope the articles are being honoured in the protracted process. As the Minister of State said, "nothing about us, without us". Was whatever rationale was used to guide the decision to delay the transfer informed by direct lived experience? I invite the Minister of State to come to Clare and meet with our local DPO, the Clare Leader Forum, and clarify the questions it has. It has relayed to me that it does not necessarily feel represented in the disability participation and consultation networks. This committee received correspondence from the Minister to state that the delivery of services provided by the HSE section 38 and 39 organisations and for-profit organisations will remain the remit of the HSE. If this €2.2 million is staying within the HSE, which is contrary to what the Minister of State said here this morning, can she elaborate on this conflicting information? If the budget and delivery of specialist and mainstream services will remain within the HSE, why has the transfer taken 18 months?

I return to the information provided relating to the nine respite houses to be opened in 2022. I am seeking clarification of one of those will be in CHO 3. I also appeal to the Minister of State to ensure these centres are located in areas with appropriate infrastructure. For example, I am aware of one centre mooted for Clare that is in a very isolated area with no access to public transport. This is a major concern for everybody involved in that so I wish to highlight it here. I am very glad the Minister of State is here today to shed some light on these matters, which are of grave concern to everyone on this committee and all disabled people and their allies.

Mr. Bernard O'Regan:

Regarding the Deputy's questions about home support, PA services and where the priority rests, in terms of alignment with the UNCRPD, there are a few different things that are not indistinct from each other and need to overlap. The increase in PA hours over the past two years, which will be increased again significantly in 2022, is the direction we are looking to go with the support of the Minister of State, the Department and the Government in terms of increasing the range and amount of PA hours that are available. This is in recognition of the importance of this service to people. It does need to be aligned with other pieces of work such as agreeing exactly what the definition of that service is. The way the Deputy articulated it and the way I understand it would be in common but there is no clear policy. It is something we have agreed to progress over the next year. We are also developing some mechanisms so that there is a common way of assessing and determining how the use of those hours is done on an equitable basis across the CHOs and we have good mechanisms for governance and administration of it.

Regarding home support hours, I understand the Deputy's point about the limitations it can place on people. The challenge for us is to recognise that those home support hours are very important for people. We must work with the providers to make sure they are provided in a way that is in line with the UNCRPD so that they are not limiting services to people but instead are enabling services to people. We need to work towards that. This is something we have been discussing as part of the work we are doing on the disability action plan referred to by the Minister of State. We have been discussing what needs to happen to make sure all of the services are aligned with the UNCRPD. That is not just about the new services we have put in place; it is also about existing services where culture, practice or delivery might need to change so that they are aligned with the UNCRPD.

The Deputy asked some questions about decongregation. Does the Minister of State wish me to deal with some of them? Does she want to go first and I can come in after her?

Anne Rabbitte (Galway East, Fianna Fail)
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The Deputy's principal question was about the under-65s. At that point in time, the answer she received meant that there was what looked like an underspend of €6 million from the HSE point of view. I am looking over at Mr. O'Regan asking if the Deputy is right. He has reassured me that at the beginning of this month, 12 out of the 18 transferred for the under-65s. I know for a fact that one of them happens to be in CHO 3 where we are being more ambitious than we should because technically it should be two per CHO. I think a house is being developed down there and is working with Limerick County Council. That might be a bit slower but the project in Limerick is a really informative piece regarding how we can work with councils and bring property on stream. To answer the Deputy's question, we will meet her target by the end of that year but of the two, I am ring-fencing the piece within Limerick. We will have three when the project is completed.

The ambition for decongregation is 144. We are currently at 95. Mr. O'Regan has assured me that we are on track. That figure is accurate as of the start of this month and we still have two months left to go.

I do realise that just one year after coming into the post we had to transfer over a few that did not happen because of the way Covid happened, but it actually followed through early in January. When we set those targets, it does happen. They have to happen.

With regard to what is going on with under 65s in 2022, everyone here believes in the will and preference, and the right of people to live where they choose to live in their community, with the support mechanisms that meet their needs. I believe it was Deputy Hourigan who earlier brought up the understanding required of the person who provides that home support, and whether they know also what is going on to meet people's needs within the community. That is all being worked out at the moment. We have budgeted for 63 people, which is four times the number of under 65s to move to 2022. That brings all of its own challenges because it is not just about the individual. It is also about the care package that is required and the considerations about the properties, and whether it is in the home. That is all being worked out. At the same time, we are mapping the need of those people who are currently in nursing homes to see where they are medically best supported, while respecting their choice and preference.

I met with the Clare LEADER forum last August, along with Deputy Crowe and Senators Dooley and Conway. My door is open at all times to anybody who wants to make contact. I am probably one of the most approachable and inclusive Ministers of State that one could meet. I have no problem with that at all.

On the piece about the transfer of functions, it is a technical movement. The government level of responsibility for policy development and oversight of disability services, including budget, is moving from the Department of Health to the Department of Children and Youth Affairs. It does not mean that the functionality of what we do day in and day out, or anything within that, is changing. My relationship with delivery of services and with the HSE will continue. The biggest piece that is changing within it is the reporting mechanism for the HSE to two line Ministers. That is a huge piece changing within it. In the past, they only ever had to report to one Minister, and now it is two Ministers. The Deputy is right that the HSE will continue to fund services for section 38 and section 39 organisations, and private providers, under the service level agreements. Other than that, there is no change whatsoever.

Senator McGreehan asked earlier about what the policy funding looks like. While we were on the meeting I received a response that my budget is €2.3 billion, and the Department of children and youth affairs' budget is €1.9 billion. I will be the bigger sister in the relationship when I move into that Department.

This gives the committee an understanding of the volume and the complexities of it. On the delivery of services, however, nothing changes. We will be looking at it, most importantly, in line with the United Nations Convention on the Rights of Persons with Disabilities, the inclusion and equality participation, and a person-centred approach. I cannot say this enough. It will be about the person-centred approach at all times, and not just through the medical model. The approach will be about the whole of the person.

Mr. Bernard O'Regan:

I will add two additional points. On the issue of the under 65s in nursing homes, in addition to the transitions this year and the transitions that will happen next year, and the mapping that is going on as referred to by the Minister of State, there is also other work going on in pursuit of the recommendations of the Ombudsman's report, including looking at areas around integrated services. This is not just about how we support people to move from nursing homes to a home of their own choice, it is also about them being able to access the range of primary and other supports they may wish to access.

On the question about respite allocation and making sure that it is used properly, at the moment the position on next year is that a draft of the service plan has been submitted by the HSE to the Ministers for consideration. Once that is approved we will then be in the position where we will be able to confirm the allocations to the chief officers in the community health organisation areas for their plans. I absolutely agree that if respite is being developed, wherever it is, it must be something that is beneficial for people. If it is being set up in isolated locations that do not afford people the opportunity for social connections and all of the opportunities they might want, that is not the model of respite we envisage or is of benefit to people. I hope the committee will be assured that we certainly would not intentionally go in that direction. We are trying to go in the opposite direction to make sure people have every opportunity for social participation.

Anne Rabbitte (Galway East, Fianna Fail)
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As Mr. O'Regan has said, when we are choosing respite, it must also be about the built environment. It cannot just be about coming inside the gate of the four walls. It also has to be what the community has to offer and it must be about participation within that community.

I acknowledge that in CHO3 in 2021, we were very fortunate to open a respite centre there for children with complex needs called St. Gabriel's. They had an operation level agreement of five days per week. To be fair, when I was there at the official opening, where I was joined by Mr. O'Regan, we also committed to ensuring that this would meet a seven-day commitment in 2022. This is a fabulous service in the mid-west for children with complex needs. It is a state-of-the-art facility and a signpost for other CHOs to go to see and to mirror. Deputy Wynne is very fortunate that it is in her CHO.

Professor Malcolm MacLachlan:

I will respond to a very important point made by the Deputy about the optional protocol in the Assisted Decision-Making (Capacity) Act. In a previous role I was the knowledge management lead for the UN partnership on the rights of persons with disabilities. We worked across more than 30 countries looking at issues such as ratification and the adoption of the protocol. Quite a lot of countries ratified and then adopted the protocol but actually do not have the means to deliver on that. Even though Ireland's ratification was frustratingly slow, it has shown that it has been very genuine in that we want to put things in place to deliver on what that sort of commitment means. It is the same with the optional protocol: having the Assisted Decision-Making (Capacity) Act fully implemented is very important. It is key to recognising that the optional protocol is not a fast route to solving any of these things. The members might be aware that the Committee on the Rights of Persons with Disabilities in the UN takes several years to process submissions. Submissions made through the optional protocol route have sometimes taken four or five years to actually come back to the country, which then has to address them. I do not think it is a case of either-or. We should definitely be doing both. Focusing on the Assisted Decision-Making (Capacity) Act will give people their rights more quickly. In parallel we should be pursuing the protocol, but implementing the Act is key.

Anne Rabbitte (Galway East, Fianna Fail)
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To follow up on that point by Professor MacLachlan, when one speaks of my functions, that was a function that the Department of Justice brought into the Department of Children and Youth Affairs. I have worked on this function along with the Minister, Deputy O'Gorman for the past 18 months. We secured funding not just in one budget but in two budgets. With the legislation coming before the children's committee, the pre-legislative scrutiny on it, and also the fabulous work being done by Áine Flynn in the decision support service, we are on course to have it up and running by next June. There is complete momentum. Regardless of where I sit, the work is being done to ensure that we hit our targets as laid out for us. I was joined by Niall from the Department of Children and Youth Affairs. He is within the remit that is working on that legislative piece. Himself, Carol Baxter and the team came over from the Department of Justice at the start of 2021 to ensure that this work would be done so we can have that whole-of-government approach with the services in place for the people. The most important thing is the services are in place.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I thank the Minister of State and I thank the Deputy.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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We are back in public session and I call Senator Alice-Mary Higgins.

Alice-Mary Higgins (Independent)
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A number of my questions and issues that I am concerned about have been raised but I will drill a little bit further into a few of them.

I wish to follow up on the question of the optional protocol and the Assisted Decision-Making (Capacity) Act. We need to be really clear that it is not an either-or situation. I mean that we should hear that there is a value in the operational protocol and we might get immediate results from the Assisted Decision-Making (Capacity) Act. From the committee's perspective, we have been really clear that we think both should be progressed simultaneously. As the Minister of State has said, there are two pieces in the form of the legislative piece and support services. I ask her to confirm that the services to deliver the Assisted Decision-Making (Capacity) Act and the legislation are being developed in parallel and to confirm that when she talks about June she is talking about both of those things. June is later than we had heard; we had expected it to be in the first quarter, I think, of next year. Then the service supports would start but all the time the optional protocol keeps getting pushed ahead. From our perspective, as the Minister of State will be aware, the optional protocol does not add a new law. It simply gives people a tool to vindicate the rights that they already have and are in the UNCRPD. It is a way of holding to account.

As the Minister of State has said, there is a long process on the optional protocol and individual cases involved but it is also part of our contribution globally. The committee members, who are responsible for implementation, were very clear that there is a duty to build up good case law. When an individual takes a case, under the optional protocol, he or she will also contribute to the building of good case law so that how the UNCRPD is interpreted in different countries can learn from these kinds of cases and examples. It is a collective raising of standards globally.

I am a little concerned that we have not got a clear date. We had previously heard January for the optional protocol ratification and we have also heard June. We need to know that the optional protocol will be ratified at the minimum by June but, ideally, in the first quarter of next year. We also need to know that the assisted decision-making legislation will not just be concluded by June but we will, in fact, have the services ready to go immediately. I ask the Minister of State to comment on that and then I might come in on a couple of the other questions. My question on the optional protocol is really important so I look forward to her comments.

Anne Rabbitte (Galway East, Fianna Fail)
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I compliment Senator Higgins and her team on the amount of work that they done through this committee in creating not just awareness but a real understanding of the role of the optional protocol, and what is expected of Government and various Departments.

First, the Senator asked whether the decision support services and legislative piece work in tandem or parallel. They work completely in parallel. The decision support services are working away in the background and will be open for business, hopefully, in June 2022. I have always said June 2022 for the opening of the decision support services. I must compliment Ms Áine Flynn and her team, and I must compliment what Mental Health Reform is doing, in terms of this. There is really good work being done in the background on this.

I hope that we will be before a committee very soon to have pre-legislative scrutiny on the legislation that is required.

Some new elements are being introduced in the Bill. These include tweaks to how things will operate to ensure a smooth process. Officials are engaging with the Attorney General on issues in the Departments. We will need to ensure they are in line.

I do not have a date for its ratification of the optional protocol. The June date relates specifically to the decision support service and the Assisted Decision-Making (Capacity) Act 2015. I see the Senator shaking her head. I ask her to hold on for two seconds. I have always said the Minister, Deputy O'Gorman, and I are happy to ratify this before the UN review of the report. The report is going forward. Professor MacLachlan explained the process really well. The Minister and I are very open to ratifying the optional protocol even before the UN reviews the report. I want to be very clear with the Senator on that. Both Ministers in the Department are completely willing to ensure that happens.

Alice-Mary Higgins (Independent)
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With absolute respect for the Minister of State's commitment, I waited through the four-year term of the last Oireachtas for the ratification of the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, which we were promised at the very beginning of that term. It only just happened at the end and that was also with a Minister who was committed to the area. The Minister of State will understand that it would be really unacceptable if June were to pass without the optional protocol having been ratified.

Anne Rabbitte (Galway East, Fianna Fail)
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Absolutely, but I again reassure the Senator that the officials are engaging with the Attorney General on the optional protocol. It is essential that we ensure that the State and all of its agencies are in line with that protocol because, as the Senator has talked about, it involves a system and we can learn from it. That is why we need to enact it but I need to ensure that every system within our Departments and semi-State bodies is ready for it. I am not holding back but trying to get everything moving at the one time. The Senator completely understands the complexities involved. It is a commitment in the programme for Government. I know exactly how frustrating it can be but I cannot commit to a particular date at this moment in time. It is a priority behind the scenes, however.

Alice-Mary Higgins (Independent)
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I will not talk more on that issue except to add that, when cases are taken under the protocol, that does not represent a failure of the State. It shows progress in moving forward.

Anne Rabbitte (Galway East, Fianna Fail)
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Absolutely.

Alice-Mary Higgins (Independent)
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However, there are certainly areas in which action can be anticipated. One of the key ones has been touched on. I refer to the scale of the move from congregated settings and the fact that there has had to be prioritisation in respect of the new residential places rather than all who need them being accommodated. The transition of those who are in situations we know to be inappropriate still seems to be happening on an incremental scale. There has been no massive move forward. That is a frustration we constantly see. Pilots are run and then programmes are rolled out incrementally instead of there being the sea change we need.

I will bundle three questions together. One relates to gaps in the service. One of the problems in the transfer is that the focus can be on transferring existing services, which may push addressing some of the gaps further down the line, which is a concern. Specific gaps highlighted to this committee involve myalgic encephalomyelitis specialists and Ehlers-Danlos syndrome. A really important issue is that of adult autism and ADHD diagnosis. There is no public pathway to get such a diagnosis. In moving the pieces that already exist about, we see that there are missing pieces. This is an opportunity to get this right. Will the Minister of State comment on those services?

I will add in two or three other pieces. I will comment on the issue of respite and something that came up when I used to work in the area with older people. It is a good practice to consider if a massive expansion of respite services is planned. I refer to the co-location of respite with day services. This can allow for a continuity of social contact and the relationships that people who occasionally use respite services may have in day services.

I will also comment on emergency respite for families. An issue that has come to my attention is that, in the same family, there may be an individual who has particular needs but another family member may have a crisis. Families have crises that are not related to the member who has a disability. There is a very long lead-in time in accessing respite which means it may not be possible to respond to an emergency need. I know of one case where one child in a family needed full-time care but another child was dying of an illness. The family could not access any emergency respite to allow the child who was dying to be at home. They were not able to balance the care. I will just mention that example if this is an area under review.

Others have spoken about the intersections with other Departments. It is clear that the Minister of State is passionate about her brief but I worry that it is still not being taken up in the same way across other Departments. In engaging around the national development plan, I was recently speaking to the Minister, Deputy Michael McGrath. We had a very good interaction on many aspects of the national development plan. However, on the area of disability, he said that I would need to engage with the Department of Health and the Department of Children, Equality, Disability, Integration and Youth. We need to really progress universal design within the large-scale infrastructure going in at the moment. The State is going to do more building in the next five to ten years but universal design is not understood as a standard we should meet in delivering infrastructure. Will the Minister of State comment on that because this is the chance to get the inclusion piece right?

On the children's disability network teams that are being set up, there is a real concern about gaps that are forming. We all know that putting a new system in place can be time-consuming but a big concern, particularly for young people, is the developmental years that are being lost. Existing supports, which may be patchy and which include supports delivered through schools, may be chipped away at or not replaced or staff within them may not be replaced because something else is coming in. That something may be better, but it is coming in two or three years down the road and these spaces may be lost.

I have commented on a load of things. I have too many bits of questions. Does the Minister of State have comments? Will she comment on the wider question of how she sees shifts pushing across other Departments? Frankly, even a supplementary budget of €200 million is very small. We need to be seeing full active inclusion reflected in the budget of every Department and in how they plan their work.

Anne Rabbitte (Galway East, Fianna Fail)
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I thank the Senator. I will ask my colleagues in the HSE to answer some of those questions or to assist me in delivering answers to them. On the gaps, the disability action plan addresses some of them. However, we are aware that more needs to be done. On adult autism assessments, we secured funding in budget 2021 to commence this process.

The Senator raised an issue which is critical to disability being addressed through a whole-of-government approach. I refer to interdepartmental working. When the national development plan was being developed, I took it upon myself to write to every individual Minister to ask them to disability-proof their submissions to the plan. When the budget was coming up, I wrote to every individual Minister to ensure that their budget submissions and applications for funding were also disability-proofed.

The Senator is correct, in that significant infrastructural changes are coming down the track. That is why there is an entire section on disability in the housing policy introduced by the Minister for Housing, Local Government and Heritage. It covers everything from universal design to adaptations in order that people can stay in their homes and be supported. That is in the intersectional piece. I have yet to find a Department that does not let me in the door when I knock. They all want to work together. The Senator is also correct, though, in that there needs to be more understanding and awareness of what universal design and inclusion really entail. We spoke about getting houses for the under-65s and supporting them. We would be better off building those houses from the ground up because that would provide for universal usage. It would be a home, but one that could be repurposed within the community.

I will hand over to Mr. O'Regan to pick up on whatever points I have forgotten.

Mr. Bernard O'Regan:

I will ask Ms Crehan-Roche and Professor MacLachlan to speak on a couple of points as well.

To the extent that I can provide any assurance on the future security of posts linked to children's services, I assure the Senator that they are intended for children's services and will continue to be for children's services, and where vacancies arise naturally, those posts will be protected within children's services and will be recruited for in that respect. There is no intention, nor would it be appropriate, that there be any dilution of what has been a hard-earned and hard-fought for investment in those services. We are clear that that should not happen.

I will ask Professor MacLachlann to comment on the question on gaps in services. In the development of the clinical programme, we have sought to ensure that those elements of service that are not on the radar, for example, specialist service needs, are comprehended by and incorporated in our clinical structure and included in our planning.

Ms Crehan-Roche will comment on the Senator's question on the availability of emergency respite so as to provide some understanding from a CHO perspective.

Ms Breda Crehan-Roche:

The Minister of State alluded to how respite can be residential, home sharing, day breaks, contract families or summer camps. There is a broad church of respite. We know that respite is very important because it enables families to continue caring for their loved ones. It helps them if they know that they can get regular breaks.

Regarding emergency respite, the Senator cited a sad example and I was sorry to hear of what happened. Respite beds provide people with breaks for a number of nights or weekends or with planned respite. However, this is usually trumped if emergency respite is required. When I was CEO of Ability West, it was sometimes the case that a person who was in on planned respite had to give up his or her place to assist an emergency placement if a family was in crisis, allowing the family to get that valuable respite service.

Sometimes families are unable to keep going. We must recognise that Covid-19 has had a major impact. There was an impact when respite was not able to run to its capacity. Unfortunately, some families must make a tough choice because they cannot take their loved ones home. That impacts on respite. We work with the HSE nationally and make funding bids in respect of emergencies. Where we can, we will provide additional supports. Sometimes, it is in the non-statutory sector. It could be in section 38 or section 39 organisations, the private sector or HSE services. The list of respite services is valuable. It is important that people have equity and fairness and get the supports they require to enable them to continue caring for their loved ones. Respite is a broad church. In respite in the home, people go in and give families a break. There is home sharing where families are trained to take someone as a guest into their homes. We have contract families where families are contracted to take in emergencies. There is a wide range of respite. I am very familiar with respite in Community Healthcare West, which covers counties Galway, Mayo and Roscommon.

I hope I have helped the Senator.

Alice-Mary Higgins (Independent)
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I will make two brief follow-up points, the first of which has to do with something I did not get a chance to mention. I am concerned at the idea of it taking a year to arrive at a definition of "personal assistance". According to everyone we have heard from, it is one of the most crucial elements. We should aim for a definition by June. Will the witnesses clarify whether disabled persons organisations, DPOs, and those who use personal assistants will be central to any definition if a more formalised approach to personal assistance is taken? I sometimes worry because so many of these services are contracted out. We have seen in home care that people are contracted out to perform certain tasks and roles. It is important that the discretion and empowerment component of personal assistance and home care be in place and that we not end up with a contract being issued for this volume of services or those kinds of task. Will the witnesses comment on their plans to ensure that DPOs are central to any formalisation of the definition of "personal assistance"? That would be useful.

I will make a final point to the Minister of State. I appreciate her comments on the national development plan. The housing element is very much focused on new housing but people with disabilities can also be renters. I will press this issue with the Minister, Deputy Darragh O'Brien, this week. I hope that the Minister of State will follow up on it in a different way, though. Where people who are renting need to make adaptations to their homes, they should not lose their security of tenure. We should push for the adaptation and retrofitting of homes to be a combination deal in order that people can retrofit for the environment and universal design at the same time, as it makes sense that this option should be offered to people. We know that people are sometimes afraid to seek adaptations of their dwellings because they are concerned it will lead to them losing their security of tenure. This is a practical issue and I do not need it to be addressed now. I only wished to highlight it.

Mr. Bernard O'Regan:

Just to confirm, we will be engaging with the DPOs on the definition. I apologise if I have misled the committee. What I meant to say was that it was one of our pieces of work to complete in 2022, not that we will take the whole year to do it. It is something that I hope to do earlier in the year rather than later.

Alice-Mary Higgins (Independent)
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I thank Mr. O'Regan.

Mr. Bernard O'Regan:

It is critical. We are also conscious that, as we move through the year to next summer, we will enter into an Estimates process again. It is important that we have that work completed by then.

The Senator asked about specialist services. Professor MacLachlann will speak to that question as well as the question the Senator asked of the Minister of State.

Professor Malcolm MacLachlan:

I thank the Senator for her questions. I will quickly go through the issues she raised. She spoke about adult ADHD services. A pathway has been established for adult ADHD. It was developed on the mental health side of the house.

Work is now developing on child ADHD services. We hope that work will be done across the two clinical programmes for mental health and disability.

Work has been ongoing over the past year to develop a new protocol around autism. We will trial that protocol in four different CHOs, starting in January. The Senator also mentioned a couple of issues around diagnosis. It is important to point out that in compliance with the UN Convention on the Rights of Persons with Disabilities, UNCRPD, the disability services push a needs-based approach. As the Senator will perhaps appreciate, two people who could be classified as being autistic may have completely different experiences of autism and, therefore, the sorts of services and supports they need can differ quite dramatically. It is certainly the case that many people could identify different diagnostic categories and say that something should be developed specifically for those diagnostic categories. In line with best practice and the UNCRPD, we are trying to develop a needs-led approach so that the interventions are available considering what is required to support people, rather than by a particular diagnostic category.

The Senator also mentioned gaps in the children's disability network teams, CDNTs. In the past month, our human resources within the disability services have undertaken an audit so that we are aware of exactly what sorts of services are provided, as well as what sorts of gaps are currently in place across the CDNTs. That will be one of the rationales for allocating the new posts.

Mr. O'Regan mentioned the work on specialised services and the clinical programme. With all of our committee work on the clinical programme, we have lived experience involvement in that. The specialised services are being developed so that the CDNTs are supported when there are particularly challenging issues. For example, full expertise may not be available on the teams. Importantly, that expertise is going to in-reach to the teams, rather than referring than somebody out of the teams and creating a logjam elsewhere. The CDNTs are a specialised service. There will be further specialised support on a tiered level to in-reach, to allow the CDNTs to be as effective as possible and to ensure that the person who is receiving the service is getting the service from the same people rather than being shunted from one place to another.

Anne Rabbitte (Galway East, Fianna Fail)
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I forgot to mention a point to the Senator. It is important to say it at this point. One of the most progressive things I have seen as part of the PDS roll-out is that we have abolished the ageing-out aspect. That piece, in which a child fell off a cliff-edge at six years of age and had to start again, is now gone. That was one of the gaps that we identified and it has been removed. That is an important, integral piece of our PDS. The other piece in the rolling out of the PDS, as Ms Crehan Roche has said previously, is that our network teams will overlap with the primary medical centres. We are going to have 91 network teams. We have 96 primary care teams. That will ensure that geography is not a barrier and there is service throughout the country.

Finally, sometimes when I watch Twitter or when I listen to colleagues, people tell me about all the gaps in the services. Within the Department of Children, Equality, Disability, Integration and Youth, along with Ms Baxter and Mr. Brunell, I sought and secured funding. That funding will ensure that I do a mapping of services. It will not map services relative to the HSE. It will take into context where we have disability providers, respite, day services, adult education that is being supportive and employability programmes across the country. It will be an integrated system where people will be able to get a one-stop shop. It will cover what is nearest to them, what suits them, and who they can contact. We should not just look at this as a health model; we should look at a whole-of-person model that takes employment, housing, education and health into account. That funding was secured in budget 2022. They are working on the pilot. At the moment the Department is creating its tender to go out. It will be ready in 2022

We are hoping that the mapping will dovetail with national ASD programme board, so that we will eventually end up with a one-stop shop for disability. We first need to map to find the gaps and signpost. That is the plan. That great work is going on between both Departments.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I would like to make a few comments and ask a few questions regarding the progressing disability model and the 91 new CDNTs. They were supposed to be established by the end of June. We are now being told that they will be established by the end of the year. I note that some are officially established, but that there are still delays in transferring information from one service to another. We have discussed the gaps' previous speakers have brought those up. A couple of issues have been being brought to my attention in respect of some CDNTs, specifically about parents being able to obtain an updated educational placement recommendation from their team. This is required for a child to enter a special class or to enrol in a unit in a secondary school. Most enrolments take place this month. They are being told by the CDNT that they will not receive this until January or February. I wonder if this could be dealt with. I am sure that this is just due to a staffing issue, but maybe it can be dealt with this year and, hopefully then, it will not arise again.

Many people are bringing up with me, as well as my own colleagues who are hearing this in their own constituencies as well, the issue of services and interventions not being provided. Instead, parents are being given training by, for example, speech and language therapists to help their children. Parents are not trained therapists. They are having major issues with this. They are being told that this is all they will get and that there will be no intervention for the child. I hope that down the line there will be invention and that a therapist will be provided. At the moment, the parents are being left and they are getting no assistance for the child. Parents are happy to take this course to assist the child, but the child needs professional help. Could the Minister of State deal with that?

Some would say that assessment of need is sufficient to identify the needs of the child and provide support. However, if a child wants to gain access to an autism unit, they need an official diagnosis of autism. They are being told that. If they do not have this diagnosis from the assessment of need process, where do they get it? Do they have to go down the line of paying privately? That option is not open to many people, even though they are being forced down that line anyway. In addition, some are receiving interventions but they are not receiving them on a regular basis. Someone compared this to going to the gym. You need to go on a regular basis. You need to go every week, or a few times a week. It is no good to go once a month. Perhaps the Minister of State could answer some of those questions. On the assessment of need, we were told that the backlog was only 500 in the summer; now it is 4,000. Could the Minister of State explain what that is about? How is that going to be dealt with?

Mr. Bernard O'Regan:

I suggest that Professor MacLachlan might answer about the interventions.

Professor Malcolm MacLachlan:

I am happy to answer and I thank the Vice Chairman for the questions. Interventions should be provided by professionally trained therapists. Again, however, we are trying to be consistent with the UNCRPD. Many years ago, when I trained in psychology, there was a model whereby if a child had a problem, her or she would come into a clinic. I would sit in a room with him or her and have an intervention. We have realised that this is not the best way to do things; the best way to do things is for the clinician to go to the child, to work in the community and to work with the family of the child.

The parents have knowledge that clinicians do not have. It should never be the case that families feel that this is just being handed over to them, but that parents are key interveners in their children's lives. We need to get the balance right. Parents need to feel supported and that there is a distinct intervention provided by the therapist. That intervention has to overlap with what the parents can do. The therapists will be there for a very short time and then disappear. The fidelity of implementing what has been suggested lies in respecting the opportunities that parents have to interact with the child, which the therapist does not have. It should not feel like handing over but like collaboration.

Mr. Bernard O'Regan:

The Vice Chairman asked questions about reports and actions where families are hearing that they will not get something until January or February, and it is needed now. I will have to follow up on that with colleagues and I will revert to her on it. We will certainly look to make every effort that we can so that there is no impeding the progress of children or their ability to access a service because they are waiting on a report. We will look at anything we can do to expedite that. I will talk to colleagues to see how we can progress it.

Anne Rabbitte (Galway East, Fianna Fail)
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To follow up on what Mr. O'Regan said, I have a concern about the matter the Vice Chairman raised. It is not the first time that I have heard it. I have heard it numerous times. Correct me if I am wrong, but the health model is a needs-based delivery programme. It is for children who wish to access various levels of education, whether at a national school or when transitioning from national to secondary school. There is assessment and diagnosis. As Mr. O'Regan said, when a child comes in front of the teams, the first matter is an assessment of what the correct intervention is. Any children coming before our multidisciplinary teams could require numerous interventions, including occupational therapy, physiotherapy or speech and language therapy. It could take a while to have an overall diagnosis of what that child needs. The priority should always be intervention. I have always said that I want to get away from assessment and to intervention. We seem to be tethered by how the education system is run, which seems to be based on assessment and diagnosis that provides an SNA or access to a special class or special unit.

The Minister of State at the Department of Education with responsibility for special education and I will have to form a working group and to gain a clear understanding of what the Department of Health does with regard to disability. I would especially like to understand what the role and responsibility of SENOs are. What is their understanding of the delivery of units, classes and access to education? Every child has a constitutional right to education and at no stage should a barrier be put in place since they have not received an assessment. We will take on board everything the committee has said, but our priority is providing timely interventions. It is critical that the HSE is held to account. At the same time, there is no point in laying the blame at one Department's door when there are other players on the stage. Everybody has a role to play. I will engage with the Minister of State, Deputy Madigan, about this, but I reiterate that I am concerned about this. It is a barrier to children.

In the Cork area, there are significant issues in this regard. Only yesterday, I had a call about Dublin 2 and Dublin 4 with my party colleague, Deputy Jim O'Callaghan, and Deputies Bacik and Andrews. We had this conversation. Children are being told that they cannot access school places in the coming year. It is time-sensitive because they do not have an assessment. We are now formulating our teams and the files have to be turned upside-down because we have to give priority. Those families need a pathway to education. Work needs to be done on this and I will not shy from that.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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The Minister of State mentioned SENOs. We need clarification about their role. The National Council for Special Education's website indicates that SENOs are supposed to support children and their families. I do not want to tar them all with the one brush. Some are excellent. I have met many in my career. Some are almost like guardians for the Department of Education, which is ridiculous. They should be fighting for the child and for whatever intervention or assistance the child needs.

Anne Rabbitte (Galway East, Fianna Fail)
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From a political and Government point of view, the investment has gone into SNAs and special education teachers. There is willingness to support the family, child, individual and the school. There seem to be stumbling blocks. There are different geographical locations where we are hitting barriers, which we need to peel into.

Professor Malcolm MacLachlan:

I will comment on the Disability Act again. It is important to note that neither the Act or the Education for Persons with Special Educational Needs Act use the word "diagnosis" anywhere. A convention has been developed where schools have requested a diagnosis. Part of the reason for that is so that they can make a stronger case for getting an SNA. It is not always the case. SNAs can be appointed without a diagnosis. There are many challenges with these relevant Acts but this is, in my view, a misapplication of the Act because the word "diagnosis" does not occur in it. As the Minister of State said, it would be great if we could get alignment between the practice in the Department of Education and the change programme that we are all embarked upon.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I have any number of other questions and comments that I would love to make but we are running out of time. I am conscious that it is almost 12.30 p.m. I might email the Minister of State if that is okay. I thank all the witnesses for coming, for their contributions and for answering the many questions and issues that were raised. They were very helpful.