Oireachtas Joint and Select Committees
Tuesday, 30 May 2023
Joint Oireachtas Committee on Autism
Autism Policy: Discussion (Resumed)
Micheál Carrigy (Fine Gael)
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I welcome representatives from Family Carers Ireland: Ms Catherine Cox, head of communications and policy; and Ms Clare Duffy, policy and public affairs manager.
The remit of the committee is to consider matters relating to services and supports provided by the State for autistic people but we must also think of carers in the community caring for family members, neighbours or friends. They play a massively important role in our society and are at times undervalued.
Family Carers Ireland, FCI, is a national charity dedicated to supporting Ireland's 500,000 family carers, many of whom provide support to an autistic person. Like other experts who have appeared before the committee, FCI believes in a rights-based approach to the provision of supports that recognises the significant strengths of autistic people and places their voices and those of their families at the heart of any planning or decision-making. We have heard from individual carers at previous meetings and it is important we have an opportunity to hear from the organisation that represents carers throughout the country. I call Ms Cox to make her opening statement.
Ms Catherine Cox:
I thank the Chairman, Deputies and Senators for the opportunity to speak to the committee. We were to be joined by Ms Mary Courtney, a family carer, but unfortunately and due to the nature of the caring role, something came up. Her mum is very ill and she was not able to make it here. She was going to be the voice of the carer caring for somebody with autism. I hope Ms Duffy and I will be able to do the issue justice.
FCI is the national charity dedicated to supporting Ireland’s more than 500,000 family carers. As the Chairman said, many of these carers provide support to a person with autism. We acknowledge and welcome the work of this committee. We fully support any effort by the State to improve support for autistic people and their families and allow them to enjoy equal and full participation in education, employment and society. Our view, which other experts who have appeared before the committee have endorsed, is that the best way to achieve this is through a rights-based approach that recognises the significant strengths of autistic people and places their voices and those of their families at the heart of planning and decision-making. We also call for the full implementation of the UN Convention on the Rights of Persons with Disabilities, CPRD, including the ratification of the optional protocol.
Unfortunately, there is no equivalent treaty to articulate or protect the rights of family carers. As such, it is our responsibility in FCI to ensure carers are supported and the immense contribution they make is recognised, valued and included in any future autism strategy. Our contribution will therefore focus mainly on the needs of those caring for a person with autism, while also addressing the needs of the autistic person. These family members and friends who provide this care are most often the autistic person’s greatest advocate and supporter.
In the interests of time, I will focus on the two areas that require immediate attention. The first is realising the constitutional rights of children with autism. Children have a constitutional right to be educated in a place and manner appropriate to their needs. They also have a constitutional right to an assessment of need. Across numerous cases, the High Court has been resolute in its findings, namely, that a lack of resources is no justification for the State to breach its obligations or allow statutory timelines to be ignored. Far too often, children who are referred for early intervention face endless delays, may not get any or all of the services required and recommended or simply age out of services. We all know a failure to provide children with early intervention misses a critical window of opportunity, increases the risk of significant developmental delays and ultimately costs the State far more in the long term. Denying children with autism their right to an assessment of need, education and support is not only an attack on these children but is also detrimental to their family, who are forced to pick up the pieces and fill the many deficits in our broken health and education system, often at significant personal cost. Research by FCI and the College of Psychiatrists published in 2019 shows the enormous physical, mental and psychological impact that caring can have when family carers are left unsupported. This survey of over 1,100 carers found almost half had been diagnosed with mental ill-health, 67% suffered from physical ill-health and 75% worried about their health and well-being.
The failure of the State to meet its constitutional obligations also has significant financial implications and forces many families to pay privately for assessments and interventions they can ill afford. A study by the Vincentian Partnership for Social Justice, which was undertaken before the cost-of-living crisis and published last year, shows a household caring for an adolescent child with a profound disability faces additional costs of €244 per week when compared with a non-caring household. A significant proportion of this cost relates to having to pay privately for services that should be publicly available. As a result, the prevalence of debt and fuel and food poverty is higher among caring households than in the general population.
It is imperative that all children with a disability get the supports they need early and often in the years when it makes the greatest difference. We call on the Government to urgently address the gross inadequacy of children’s disability services by implementing the programme for Government commitment to extend the National Treatment Purchase Fund, NTPF, to secure timely assessment for both child and adult psychological services and to consider a similar extension of the NTPF to include occupational therapy, speech and language therapy and physiotherapy. Surely supporting children with autism to reach their full potential is as important as replacing hips and removing cataracts, which are both routine procedures covered under the NTPF?
On inclusive education, the FCI welcomes the review of the Education for Persons with Special Educational Needs, EPSEN, Act, the reform of the summer programme and the activation of emergency legislation that compels schools to open special classes. These initiatives are long overdue and any benefits deriving from them will ultimately be judged on whether they deliver much-needed change for autistic children and their families. We also stress that opening new school places should not only alone create inclusive education but, rather, must be accompanied by future planning, funding, staff resources, staff training and cultural change to embed educational inclusivity into the new norm.
The second area we wish to speak to is adopting a whole-of-family approach. Living independently is a goal we all share. However, some autistic people, especially those with co-occurring conditions, require the full-time care and support of their family. When a child or adult has autism, it affects the whole family and, in some cases, can put a severe strain on family life. In these situations, it is critical that a whole-of-family approach is taken and supports are in place to enable and sustain family members in their caring role. An essential element of carer support for these families is access to regular and appropriate respite both within and outside the home. For some weeks, we have been hearing on the airwaves about the difficulties in accessing respite for many families. Respite provides relief from the daily demands of caring and allows parents to spend time with their other children, which is critically important. It also allows the person receiving respite to have a break from their family members and home environment, while providing opportunities for socialisation and specialised care. Access to regular respite has also been shown to reduce the need for full-time residential care. It is deeply concerning, therefore, that family carers have no entitlement to respite, which means that many carers care 24-7, 365 days a year without a break. While we acknowledge the efforts of Government to improve respite provision, access to regular respite remains a pipe dream for many families.
At present, we do not have data on the number of respite places available for children or adults. For many years we have called for an audit. This is a significant problem. We are calling for a national audit of respite provision to be undertaken by the HSE. We believe that a national respite register should be established to allow family carers to register their need for respite along with the age and details of the person for whom they care. This would provide a geographical inventory of respite need by age group and condition type. We are also calling for all full-time family carers to be given the right to a minimum of 20 days respite per year, in line with the statutory annual leave afforded to paid employees. You are I are entitled to 20-something days of annual leave per year; a family year is not entitled to a single day off.
Finally, even before Covid-19, it was agreed that a broader discussion was needed on the role of care work, including the rights and needs of family carers, the financial support available, and whether the value of care work to our society requires recognition in the Constitution. The report of the citizens' assembly on care was resolute in this regard expressing a high level of ambition for change in the how family carers are recognised, valued, and supported. It recommends the reform of carer’s allowance including changes to the means-test; increasing the hours carers can work or study outside the home; reimbursing the costs associated with care; increasing respite provision; and providing a dedicated pension for family carers. We welcome the recent announcement of improvements in the State pensions system for long-term carers effective from January 2024, however, Family Carers Ireland urges the Government to be ambitious and reform the carer's allowance scheme towards a payment based on needs not means, along the lines of a participation income for carers, that truly recognises and compensates full-time family carers for their work in the home.
Of particular significance is the assembly’s recommendation to replace Article 41.2 of the Constitution, and An Taoiseach, Deputy Leo Varadkar’s recent announcement that a referendum on care and equality will take place in November. The replacement of Article 41.2 with wording that recognises the societal value of care and obliges the State to take reasonable measures to support care, is a milestone moment and will create an important constitutional affirmation of the public and essential good that care work provides to society and to our State.
I thank the committee again for its invitation to meet its members today and myself and Ms Duffy are happy to take questions now.
Micheál Carrigy (Fine Gael)
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I thank Ms Cox for her comprehensive opening statement. Before we start I put on the record as Chairperson and I am sure on behalf of all of the committee members our thanks to those who are caring. Everyone of us knows in our own local communities throughout the country the valued work which is done. The last two paragraphs read by Ms Cox very much encompass what the public feel. It is incumbent upon us as public representatives to ensure that the Government approach mirrors what is felt by society. These are strong recommendations and Ms Cox also referred to comments by An Taoiseach which I believe are quite positive towards further changes and supports for carers.
I welcome Senator Flynn's young daughter to the meeting today.
We now move to our questions and on the week of slot 3, our first contributor is Deputy Pádraig O'Sullivan.
Pádraig O'Sullivan (Cork North Central, Fianna Fail)
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I am not in the precincts of the Houses as yet. I am on my way in. I will be a little delayed by another 20 minutes or so, once I have signed in.
Micheál Carrigy (Fine Gael)
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I thank the Deputy for that. I call Senator Flynn to speak now, please.
Eileen Flynn (Independent)
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I thank the Cathaoirleach. First, I thank Family Carers Ireland for all of the work, not just today or yesterday, but for many years and the changes made on behalf of the people it works for which have happened over the past number of years. These have not been easy changes to provide value for carers within Irish society.
What really struck me at the end of Ms Cox’s presentation was the proposal to have a referendum which is a good thing. This value should be just given without having to get the opinion of the whole nation as to whether we should value or not value our carers. I would like to look at that going forward and at how we can do that without that approval because people will obviously vote the right way to look after carers because every single family in the whole of the country at least knows a carer, or someone who needs to be cared for.
The audit and the respite are well overdue and that is a recommendation which I will look to push for on this committee. I will look for an audit and for respite.
I put to Family Carers Ireland the question around the recommendations for this committee. The Committee on Autism is due to end very soon so if the views of Family Carers Ireland and its voice is be heard in that report, what would it be? What are the two changes it would like to see happen for people who care for others in Irish society?
Again, on social protection, I have big issues around getting carer's benefit and even getting disability allowance. This was even around the Social Welfare (Child Benefit) Bill in the past week. While welcoming the €100 a month for families until the end of the year, it is a cost to have a child with a disability. With the cost of living now so high, how do we look after those families within the cost-of-living crisis at the moment?
For our children, I am aware that we have got good services and people working in them for respite and it is not their fault but it is a fault of the system. How do we change that so that we can give carers - and for much of the time it is women - that time off at least once a year for respite? This is also the case for many people who are caring for adults who are autistic. How do we provide this support because I do not have the answers to this? That is why I was determined that I would be here to listen to our guests’ views so that we will be able to incorporate these into the report.
On the point about education, it is not just about access but is about opportunities to be successful. Is there anything the witnesses would like to add to the report around children with autism in our education system? I thank the Cathaoirleach.
Ms Clare Duffy:
I thank the Senator and I will start with the final question. As Ms Cox said in the opening statement, and as I believe Adam Harris of AsIAm also said when he appeared before this committee, having more school places is a critically important first step. There are many things which must come after that like the culture within the school and actually having genuine inclusivity. Having the place is only a first step.
The Senator had many questions so I hope I have taken them down correctly. She is right to acknowledge the positive changes that have happened for carers over the past decade or so. Many good things have happened.
One of these, for example, is the new pension provision which will come into force on 1 January 2024 for long-term carers. These are for people who have been caring for more than 20 years. Ms Cox and I have been knocking around this sector for so long and we were always giving out about the pension for carers so this is a real positive move forward.
The Senator specifically mentioned the referendum which will be happening in November. We do not know the exact wording yet because the interdepartmental group will not be making its recommendations until next month. We are very happy with that and are looking forward to finally getting our hands on Article 41.2 and bringing it up to speed and to date, modernising it and having an article which actually values the care provided by men and women. That is very important. Yes, the vast majority of carers are women but men do it too and we must also value that.
Ms Cox and I, she more so than I, will be involved for the equality campaign in the run-up to the November referendum.
The Senator also mentioned the audit of respite provision and asked what we can do to fix the problem we have within respite. I acknowledge that there have been huge efforts by the Minister of State, Deputy Rabbitte, and others to try to increase respite provision. Each one of the new CHOs had a new respite centre. However, it is still grossly inadequate to meet the level of demand. When Ms Cox said we need an audit of respite provision, we actually do not know how many respite beds exist in the system. We do not know today how many specialist respite beds there are for children with profound physical or intellectual disabilities. We do not know. We should not measure respite in beds so apologies, that is my mistake. Another issue is that the respite places that are available can change very quickly. If HIQA issues a new standard that the beds have to be so far apart, we have just lost so many respite beds in the system. It is understandable but we have to begin by saying how many respite places exist and for whom. We start at the very beginning and build it up from there.
Eileen Flynn (Independent)
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I welcome the referendum, but my point is that it is sad for a society to even bring the matter to a referendum.
Ms Clare Duffy:
When we have it there, we have it enshrined. The Senator was saying we can almost assume a "Yes" vote. I would be less optimistic. I would hope that would be the case but there are three articles potentially going for the vote in November. It might not be as straightforward as just Article 41.2. I would not just assume what can get mixed up. I do not know if there has ever been a straightforward referendum, maybe there has.
Ms Catherine Cox:
To come back in on respite, what is really important is that it is appropriate to the needs of the family and the person requiring respite. Probably the biggest fear for most family carers as they age is what will happen their son or daughter when they are no longer here or no longer able to care. As well as planning for respite now, we need to look to the future and see how many residential care settings we need. By doing that, at least families can be secure in the knowledge that their loved ones will be well looked after in appropriate settings when that time comes. In order for that to happen, we need to see a transition. Where somebody feels that their loved one may have to go into a residential setting in three or five years' time, that should happen over a phased period in order that it is not sudden and that when there is a crisis and a parent dies or is suddenly no longer able to care, the person they are caring for will not go into a very inappropriate setting, for example, a nursing home, if they are only in their 40s or 50s. We need future planning in order that the transition period can be smooth and that people's minds can be put at ease, particularly in the context of loved ones being placed in appropriate settings.
Eileen Flynn (Independent)
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It would be interesting to get Family Carers Ireland's views on the referendum, what it thinks the challenges may be and how we can campaign. Obviously, no referendum is easy but I think people tend to vote in the context of the right thing to do.
Ms Catherine Cox:
As soon as we have the wording, which will probably be around the end of June, we will be much clearer in respect of that matter. In the context of Article 41.2, we certainly feel it will put a value on and recognise the work of family carers, which is really important. We believe it will build a foundation, hopefully for future legislation to enshrine the rights of carers, which is really important for us.
Micheál Carrigy (Fine Gael)
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Before Deputy Buckley comes in, I wish inform those present that Deputy Tully has indicated that she might be late for the meeting. Hopefully, she will get here.
Pat Buckley (Cork East, Sinn Fein)
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I thank Ms Duffy and Ms Cox for their opening statement, their honesty and their passion. I love it. Sometimes people come in here and they have a fear of cameras or whatever. The witnesses are spot on about a rights-based approach, based on needs, not means. We have been hammering that here for the past number of years, in the context of Sláintecare, the future of mental health care and so on. They mentioned ageing out of services and the mental health stress of over 50% of family carers about what is going to happen to their children once they pass on. Could the Assisted Decision-Making (Capacity) Act overlap into those services as a backstop for people? Surely it would give them an option to nominate somebody to look after Brian or Mary in ten years' time. That just came into my head when Ms Cox was talking about it. I am glad our guests have said on record that families have no right to respite themselves. People may not be aware of that. It is 2023. I do not envy anyone when it comes to planning or policymaking. This should have been done 20 years ago.
My big bugbear for the past seven years - it was mentioned by Ms Cox - is the optional protocol. Why do the witnesses think it is so difficult for the Government to ratify the protocol? I have my own opinions on it. I think it is because it would be based on the person's needs, and the Government will not be able to supply it. It should be like was mentioned already, namely, a different kind of High Court case. One of our guests referred to the culture change within the education system and how there should be a culture change within the whole system. This is about a rights-based service based on people's needs. If I break a leg, I am not going on a waiting list for six or 12 months. It has to be fixed. I am worried about training, recruitment and retention. I think it can be addressed. Ms Duffy and Ms Cox are right about the schools and stuff but there has to be a big buy-in from everybody. It is about supporting everyone.
The job family carers do is just infinite. We cannot put a price on it. I am very conscious of the stress that those families are under and that they cannot get a break. I was not aware and I cannot believe that we do not know how many beds or services associated with the beds there are in the country. I do know that in some places they are actually closing respite centres. It was not this committee but another committee where we had witnesses from the HSE and, like Ms Duffy said, it could be a tiny tweak. It was 78 cm of a gap between the two beds and they wanted to shut the five-bed ward down instead of taking the common-sense approach of making it a four-bed ward. I do not envy Ms Duffy and Ms Cox on where they are going there.
My big issues relate to the question on the Assisted Decision-Making (Capacity) Act and the witnesses' opinion on why Ireland has not ratified the optional protocol. We ratified everything else in and around 2018. The optional protocol has just been dumped on the shelf. There is a lot in that and I spoke slowly and all.
Ms Clare Duffy:
The one on the optional protocol is an honours leaving certificate question that I did not study for. Clare Duffy's view, separate from Family Carers Ireland, is that it is all about the complaints mechanism and what is not working about the UNCRPD. So much is not working. If I am a person with a disability, I have the right to live independently in a place of my choosing. I know very few adults who require care who can say that. They are still living with their mam and dad who are in their 80s. To me it is that simple. There is so much that we just have not got right yet. It took us a long time to ratify it in the first instance. Anyway, that is honours leaving certificate stuff.
The Deputy also talked about the Assisted Decision-Making (Capacity) Act. Ms Cox and I have been all over that Act since it was signed into law in December 2015. There were seven-plus years between its enactment and full commencement on 26 April. We have so much to say about the Act from the perspective of the carer. Áine Flynn of the Decision Support Service has responsibility for the Act, which makes provision for the relevant person, namely, the person who has diminished capacity. However, there is no provision in the Act for the family members or friends who act as the decision supporters or interveners and who carry huge responsibility. That is the problem.
We like the Act. We welcomed the Act. Anything is better than what went before. However, that is the issue. Deputy Buckley asked if there was anything in that Act which could help address that concern which parents have about what is going to happen their child when they are gone. Yes, there is something there. The Act is all about recognising that the relevant person has diminished capacity, and then being able to step in at whatever level, or three levels, to support them in their decision making. The only comfort which I think a parent could get in that instance, and Ms Cox can correct me if I am wrong, is knowing that when they are gone, they have a sister or another sibling who will take up that role, or do something like that. In a way, it does not give them the comfort of knowing where their son or daughter is going to live when they are gone, and that they can see the wee house, and the little independent place where they are going to be. It does not give them that comfort.
The other thing which the Assisted Decision-Making (Capacity) Act does is it allows for the legislation to commence the advanced healthcare directives, where I can say, "Look, if anything happens me, God forbid, I do not want to be resuscitated". It allows me to articulate my future wishes. However, I do not think it is going to fix that big problem of the comfort families derive from knowing that their loved one is going to be looked after when they are gone.
Pat Buckley (Cork East, Sinn Fein)
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That is good to know. In the back of my mind I am thinking that that is another bit of legislation that needs to be worked on, because it is about protecting people.
Pat Buckley (Cork East, Sinn Fein)
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No, I am not. I love Ms Duffy's honesty, and that is why I asked.
Ms Clare Duffy:
A really critical piece of infrastructure in the Act is the decision supporters, the people who step up to the plate and say, "I will be your decision supporter". By the way, we carry a lot of responsibility then, because if I am at the highest level, what is called a decision-making representative, DMR, and I am looking after Ms Cox, I have to do annual reports. I have to say that I took her disability allowance this week, and I spent it this way or the other. That means that I carry a burden of responsibility.
Ms Catherine Cox:
There are also additional costs to the family member, because they have to apply to the court if they want to be a decision-making representative. There are about 18,000 families in this country who are family carers and caring for someone with a profound disability, and who this Act does not really consider. Those 18,000 families, potentially, will have to go to the courts to become DMRs, because the person they are caring for does not have capacity. Those parents are a little bit in limbo at the moment. It could take them a year or two years depending on how the courts are backed up, if all of these families suddenly come forward and realise they need to go to the court to become this decision-making representative.
Those families have not really been considered in this legislation. As Ms Duffy said, we believe this is positive legislation. It will bring about positive change, probably in the next five to ten years. However, in the next three years, it could create a lot of challenges for family carers who need to go to court to become decision-making representatives. It is positive legislation, but there are definitely challenges there. We believe that family carers were not considered when the final Act was being commenced.
Pat Buckley (Cork East, Sinn Fein)
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Talk about a wealth of knowledge. I thank the witnesses very much. Very briefly, in many organisations, with whatever one comes across, there seems to be a lot of disjointedness, particularly in trying to get wraparound services, etc. Would the newly formed Decision Support Service, that network, be of any advantage? Does it fall under any remit to help Family Carers Ireland or carers themselves?
Ms Clare Duffy:
The purpose of the DSS is to oversee the implementation of the Act. It is housed under the Mental Health Commission. Its role is to implement the Act, make sure Joe Public understands it, monitor it, see if there are any problems with it and accept complaints around it, and monitor the DMRs. It can see if Clare Duffy is behaving herself if she is a DMR for Ms Cox. Its sole purpose is overseeing the Act.
Ms Catherine Cox:
It provides information and support to people. There are three different levels of decision-making. One can be a decision-making representative, which requires somebody to go to court, but there are two others - a co-decision-maker and a decision-maker assistant. If a family becomes one of those two, then the Decision Support Service holds those agreements and monitors them, as Ms Duffy said. It provides a support with regard to how one would go about creating those agreements. It will advise families, and do a number of awareness sessions. However, it is solely there to support the implementation of the Assisted Decision-Making (Capacity) Act.
Pat Buckley (Cork East, Sinn Fein)
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I thank the Chair.
Micheál Carrigy (Fine Gael)
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I call Deputy Ruairí Ó Murchú.
Ruairí Ó Murchú (Louth, Sinn Fein)
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Apologies, I have just landed, but I was listening to the debate the entire time. I will not break with what people have said in thanking everyone. We could not operate without family carers. I know the witnesses are probably fed up hearing that, and it is fairly trite. However, in our work, we have come across a huge number of people, and some obvious things are said about the heavy lifting which carers are doing from their own family's point of view and from society's point of view. They are saving this State a huge amount of money. In fairness, they are not always being met anywhere close to the middle.
There has already been significant conversation on the necessary moves, whether we are talking about anything from pensions through to all the payments. I accept there are always grading points, but we need to look at family carers slightly differently from how we look at social protection payments across the board. I do not know how many people I have met who have probably had fairly decent-paying jobs, but then because of their family circumstances had to become a full-time carer. On top of the impact which that had on making mortgage payments, etc., at times the State can be incredibly stringent. I get it that rules are rules, but if the rules do not work, one changes them. That goes without saying, so it is something we really need to get a grip on.
I would like to talk about a particular issue which has been thrown at me in the last couple of days. We all know the issues when people even get into the services, whether it is primary care, disability services, children's disability network team, CDNTs, etc.We have all had the argument about the child and adolescent mental health services, CAMHS. Nobody is particularly worried about where they get the service, if only they and their child get the service which is absolutely required. However, the fact is that at times one is dealing with outfits which have very specific rule sets that one needs to fit. The problem is we can be dealing with autistic people - I will not say out-of-the-ordinary - who do not necessarily have the comorbidities. We all understand that dyspraxia meets attention deficit hyperactivity disorder, ADHD, meets autism, and all the behavioural difficulties there can be. However, there can be people who have other very specific symptoms, and even diagnoses at times. I am not going to go into the specifics of it, but they find over many years that they have literally been pushed from pillar to post.
It is easy for me to say, but my impression at that times is that one is dealing with services which are all under-resourced, so they have to try to keep as many people off their books as possible in order they can probably do justice to those they have on their books. Obviously, individuals then feel, and probably rightfully, that they are getting screwed over completely. I am going to ask the witnesses' view on that.
In fairness, this committee has been very good at getting down to a number of thematic problems we have which need to be dealt with. At this stage, it is a case of us knowing that we do not have enough of any of the services, so can we look at what we have and at what is the best we can offer to people at this point of time? As I said, I am going to ask the witnesses about their view on that.
Deputy Buckley went into assisted decision-making, and the witnesses spoke about welcoming the legislation but with a "but". That has been raised with me by a number of people operating in the disability sector and beyond. We all know the issues we have had in society, and I am making a fair jump here, in the sense that we had a society which did not necessarily have the respect it needed for human rights' situations. However, I also find we have situations and circumstances we may be overlooking at times in terms of people with real need, and who need real protections. I am not entirely sure we have found that sweet spot which is absolutely perfect. I know I have left that one open to interpretation, but if the witnesses could try to answer my questions, I would be only too delighted.
Ruairí Ó Murchú (Louth, Sinn Fein)
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I am looking for PhD answers, never mind leaving certificate honours.
Ms Catherine Cox:
Obviously. The Deputy is right that society does not respect human rights. When looking at assisted capacity, it is really important to look at the rights of the person providing the care, as well as the rights of the person at the centre. If we do that, that will look after itself.
The Deputy’s first point was around carers. They save the State €20 billion every year. I always like to give that figure because it is huge. If we had to replace the care family carers do in the morning, that is what it would cost.
Ruairí Ó Murchú (Louth, Sinn Fein)
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That would be the case, and I remember it being said before, even on a CHO level, if everybody dropped the person they were caring for into accident and emergency and went away.
Ms Catherine Cox:
Government knows and we know that will not happen. Unfortunately, that care and love is taken for granted and carers are left unsupported.
The Deputy spoke of carer's allowance and reference was made previously to the difficulties carers have in accessing that, as well as the completely inadequate amount of that payment: €237 per week for somebody providing 24/7 care. We have lobbied for many years that a carer’s payment should be based on the care provided. We are looking for a participation income payment so carers are paid for the work they do and it is a just and fair payment. The pandemic unemployment payment was set at €350 per week because it was recognised people could not live on much less. At a minimum, the payment should be set at that and based on the needs rather than the means of a person. To look at the means not only of the family carer but of their spouse in terms of whether they get carer's allowance or not is outrageous and unfair. If we value and recognise the work family carers do, we need to compensate them appropriately based on the levels of care they provide.
Ms Clare Duffy:
I agree completely with the Deputy about the need to reset the social welfare system. After Covid the term "the great reset" has been used to refer to rethinking everything and I think we need a great reset for the carer's allowance scheme. It is 33 years old. It was established in 1990 for people caring for a relevant pensioner living in the same house. It was not designed for parents caring for children and adults with autism for 20, 30, 40 or more years. It is time to completely reset the scheme. As Ms Cox said, we are looking for fundamental reforms, to move towards the participation income and, in the meantime, to increase the income disregards generously. The carer's allowance income disregard increased by 250% between 2000 and 2008. We all know what happened in 2008. The disregards did not increase after that. They increased for the first time in 14 years in 2020, by 14%. Now in 15 years, the disregards have increased once by 14%, but in eight years between 2000 and 2008 they increased by 250%. We need to think differently.
The Deputy's question around services is difficult. Those co-occuring or overlapping conditions or diagnoses have been a massive problem for families: "Look, your child has autism but they also have a mental health difficulty; therefore, you're not going here." There is a tug-of-war between disability services and mental health services. Who falls in between the stools?
Ruairí Ó Murchú (Louth, Sinn Fein)
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Throw in a physical difficulty and genetic disorder.
Ruairí Ó Murchú (Louth, Sinn Fein)
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Or you will get exited from every one of them.
Ms Clare Duffy:
I do not know if that is improving. It has not shown itself to be the big issue it was a year or two years ago. That does not necessarily mean it is resolved.
Ms Cox referred in her opening statement to a position we have held for a number of years which is a little bit controversial. It concerns the NTPF. The Labour Party tabled a motion last week which reflected this for the first time. The programme for Government states - this is my language but is pretty much what it is saying - the NTPF will be extended to offer timely psychological assessments for children and adults. That is a game changer. It was a significant commitment but has not happened.
Ruairí Ó Murchú (Louth, Sinn Fein)
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Mark Dermody has made it clear they got State back pay in relation to an AON. It has happened in certain places across the system but not others. Promises have been made on the basis of some of the discourse that was here. We need to see that delivered. Some of this is out of desperation. We need to look at what the best means of both assessment and therapies are. I think it was Adam Harris who said there is a lack of trust at this point.
Ms Clare Duffy:
That is an issue. I understand why some people do not like the NTPF model. We do not want to take psychologists, physios and so on out of the public system and entice them into the private sector. However, we do it for cataracts and hips. We do not have that luxury. If these children get early intervention and supports, they can flourish and reach their full potential. For some reason, we are denying them that.
Ruairí Ó Murchú (Louth, Sinn Fein)
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In some of these cases, we are only taking about assessments. We are not even talking about therapies.
Ms Clare Duffy:
That was the only commitment in the programme for Government. We are gone beyond crisis. The members know this better than anyone. We are in an emergency situation. To address the emergency within three, five or six years we have to open up the NTPF and clear those backlogs. It requires legislation. In the meantime, we are investing in training OTs and thinking smarter about the people coming through college now.
Ms Catherine Cox:
I know Cara and Mark Dermody were before the committee. She made a valid point that we are not treating this like the house on fire it is. They have allowed me to speak about their family situation. They have two sons with autism. One of them got early intervention, which has made a huge difference; the oldest son did not, and now they are seeing the results of that. Early intervention is crucial. It is not just early assessment, but then getting the therapies and supports they need to live their best lives. Denying children those denies them the right to develop to their full potential. It is storing up hurt and future costs to the State.
Ms Clare Duffy:
Ms Cox referred in her opening statement to people paying privately. We look at waiting lists and see there are a hundred and something thousand children on them. That is frightening but that is not even the reality. The vast majority of families I engage with have found the money from somewhere to pay for the assessment. They do not have the money. They have gone to the credit union or got it from family to pay for the assessment. The waiting lists for the assessment are not even the full picture. That is really frightening.
The work the Vincentian Partnership for Social Justice did for us last year using data from before the cost-of-living crisis showed, as Ms Cox mentioned, families caring for a child with a profound intellectual or physical disability incur an additional €244 per week more than I do, as a non-caring household. That is more than the rate of carer's allowance. Sr. Bernadette and her colleagues in the Vincentian partnership found much of that €244 is made up by families being forced to pay for things that are, officially, publicly provided. The adequacy of carer's allowance is linked to that. We do not have universal basic services. It is all going on supplementing that.
Ruairí Ó Murchú (Louth, Sinn Fein)
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No, it will never cover that. We have to look at what we can offer at the moment, make the best of it and plan for the future. It has been said here a number of times we need a life plan for citizens. We could probably break down any issue in relation to housing, dealing with local authorities or talking about services or respite. We have dealt with patients. A lady was in with me and said her kid had been exited so many times. Her contention is serious stuff from a diagnosis point of view. It was missed on the basis they did not have the baseline because she was out of service when she should not have been, having fallen between too many stools.
She is now due for respite but is almost at the start of a list when the amount of time she has already been waiting should have been considered. It is a particular issue and I will be chasing it later. At the time, she did not fit certain criteria and the child was moved from primary care to child and adolescent mental health services, CAMHS, and back to disability services. The child has been in and out of disability services three or four times.
Ruairí Ó Murchú (Louth, Sinn Fein)
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The person I was talking to also fell into that category. There were so many issues I nearly forgot to mention that.
Ms Catherine Cox:
There is an issue with one particular family where the council is actively looking for a house to suit their needs but if the council goes to bid for a house and a first-time buyer is also bidding, the council must pull back. Where a family with a child or adult with a disability is in crisis and needs housing, there should be some sort of exemption in place to allow them to be considered. Perhaps such a rule or exemption could be considered to support a family like that.
Ruairí Ó Murchú (Louth, Sinn Fein)
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I would say that is a particular local authority rule.
Ruairí Ó Murchú (Louth, Sinn Fein)
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I see the Cathaoirleach is getting worked up.
Ruairí Ó Murchú (Louth, Sinn Fein)
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It is my fault and not Ms Cox's. I apologise.
Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I apologise for being late; I was unavoidably detained. I read Ms Cox's opening statement last night. Unfortunately, there was nothing in it I have not heard before. I apologise if I ask a question that has already been asked. Ms Cox has talked about respite. We as a party are bringing forward a motion this evening highlighting the fact that the provision of respite is declining. The level of provision of respite in 2022 was lower than in 2018. The level of provision has been in decline since 2008. We know how many families received respite in 2022 and 2018 but have we any idea how many are looking for respite? Is there any way of gauging that? I have heard from many families who are on a waiting list. In my own area, there is one facility between Cavan and Monaghan and it serves children one week and adults the next. A second place in Monaghan also provides some respite for adults. I must admit it provides a very good service. The services, where they are provided, are generally very good. In our motion, we are calling for deficits to be identified and addressed, and for a disability capacity review. We are still without an implementation plan. Respite is included in that, as are many other disability services. There is not yet an implementation plan for the national strategy for housing for disabled people. We have been promised it is imminent and will be delivered within weeks. That is what I was told two weeks ago but there is still no sign of it.
Ms Cox talked about all-family support for people with autism. We have a brilliant resource in the Middletown Centre for Autism, which does that in the North. Unfortunately, in the South there is only a pilot programme, even though it has been in place since 2007. The Minister for Education, Deputy Foley, promised it would be expanded this year and I hope that will be the case. I know support is only provided to 12 children identified by the National Council for Special Education, NCSE, compared with 60 in the North, even though there is a much higher population in the South. Are we talking about a situation whereby children are given supports in school and in the home, and also that the family is also given support? I think that would be very important.
Ms Catherine Cox:
The Deputy asked about respite care. We need a national audit of what respite beds there are and what provisions there are, and then to consider the gaps. We do not have that information. We have been calling on the HSE to conduct such an audit for 20 years. Until we get that, we cannot plan and do not know our future needs. We are also calling for a register to which family carers can sign up to say they need a certain amount of respite. They would insert the age and condition of the child or person for whom they are caring. That would allow for future planning. I read the Sinn Féin motion, which we welcome, in particular in respect of respite.
I will return to the issue of housing. Another issue that keeps coming up is housing adaptation grants and the fact that the maximum available is €30,000. Most families who price a full adaptation, including a downstairs bathroom, are given an estimate of €60,000. Families cannot afford to put up the outstanding amount. While they might be on waiting lists, they will not be able to afford to go ahead with an adaptation. That is another issue.
In terms of support in schools, that is about the needs of individual children. Many families want their children to go to mainstream schools, which potentially means giving up a place in a special school. By doing that, they also lose out on the supports they should get in mainstream schools. Ms Duffy talked about inclusivity. The family carer who was to be before the committee today was going to speak about how she would choose a mainstream school for her child but has not seen inclusivity. There are examples of, for example, children being excluded from the school play because they do not have what the school sees as the skills to be involved. Inclusivity involves the need for cultural change so that all children are welcome and included. That is important. Ms Duffy may wish to add to what I have said.
Ms Clare Duffy:
I acknowledge Deputy Tully for all the work she does. She is a co-chair of the Oireachtas cross-party interest group on family carers. She has been brilliant and I acknowledge all the work she has done.
I do not have much to add to what has been said other than to raise another issue in respect of housing. My colleague, Mr. Andrew Rooney, has done brilliant work in research across local authorities and looking at how each local authority treats and assesses caring households for the purposes of the differential rent scheme. He has a table that shows that the difference between the local authority with the lowest and highest levels of assessment for the scheme is approximately 80%. There is an enormous difference in the rent rates. It is within the autonomy of each local authority to include or exclude the half-rate carer's allowance or to assess carer's allowance at the basic rate. All local authorities have autonomy to assess it as they wish. The piece of work showing the differences is very interesting. The Department is due to do a review of the differential rent scheme. It is one of the commitments in the programme for Government that it will standardise differential rents across the country. I understand from the Department that is not going to be open to public consultation. We will submit that work without being invited to do so.
Going back to the register and how we figure out respite, where do we go with this? One of the things I mentioned earlier, and I must be careful of my language here, is that within the Department of Social Protection, there will be a new way that long-term carers will be assessed for contributory State pension purposes form 1 June 2024. One of the biggest challenges that the Department of Social Protection has now, and the Pensions Commission had in the past, is how to identify who these carers are. How do we know that, say, Clare Duffy cared for someone for 20 years while Catherine Cox only cared for someone for 16 years? How do we know that? The spirit of this new rule is that one should not have had to have been getting carer's allowance previously. The Department had to figure out that problem. It has created a register where carers can register themselves as in that category. It is almost a self-declaration so there is a lot of trust involved. Something similar could be done in respect of respite. Is it up to the State to figure out where every person who needs respite is in every pocket of the country? Perhaps it is up to us to come forward and say, for example, that I live in Connemara and have a child with autism. I know there may be problems around the general data protection regulation, GDPR, but that may be a start we need to consider.
Pádraig O'Sullivan (Cork North Central, Fianna Fail)
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I apologise for being late. I was stuck on the bus but I got here in the end. I know we are tight for time so I only have a couple of questions.
Comments have been made about the carer's allowance and what was recommended in the citizens' assembly. I heard that our guests broadly welcome those recommendations. Family Carers Ireland represents approximately 500,000 carers across the country. I would like to hear our guests' thoughts on a graded payment depending on the severity of the illness or ailment from which the person being cared for is suffering. What is our guests' opinion on a graded payment for carer's allowance?
Respite was raised as a Topical Issue in the Dáil last week. I share a CHO with Deputy Buckley.
Our estimate is that about half the beds that are for respite are not adequately staffed. In CHO 4, which covers Cork and Kerry, about half of beds are not operational. Is it a similar situation in the witnesses’ counties or CHO areas?
My third question relates to a commitment that the Minister of State, Deputy Rabbitte, made last week on the floor of the Dáil in respect of reimbursement for assessments of need and respite. If the HSE and service providers were not able to provide for them, she is in favour of outsourcing or privatising them, or reimbursing people at the very least. I wish to hear the witnesses’ opinions on that.
I hate to ask a question about the cost of care, but the witnesses referenced it earlier. I hate asking the question. I estimate that there is somewhere in the region of €250 million going into services in Cork between the main service providers. Are we getting value for money as a State in respect of that investment?
Ms Clare Duffy:
On the last question on the cost of care and the services in Cork, I am not familiar enough with the specifics of what the Deputy spoke about to say whether there is value for care deriving from that.
I will go to the first question, which was the graded payment for carer’s allowance. Deputy Tully and I have mentioned before that we are a little bit afraid of that. It has been floated by the Minister as well. People will say that no two caring situations are the same. I could be 24-7 and another person might be 40 hours a week. That is true. When we begin to try to decipher that we have one carer over here who is more deserving than that carer over there, when we do not goes on behind the front door, that becomes difficult. I often meet families where the person receiving care can present quite normally when they are out but it is a different story at home. I worry about how we distinguish between those levels and the administrative burden of starting to do that. In the Department, already the medical assessment they do in Longford is difficult without saying “You missed out on being tier 2.” It is a matter of concern to me, but that is probably Clare Duffy’s personal opinion as opposed to that of Family Carers Ireland's.
Ms Catherine Cox:
I would be of a similar opinion, as would many parents. In the past, we would see the grading of mild to moderate to severe for conditions. Quite often, those with mild to moderate conditions who got the lowest level of service. However, that could result in their child going from mild to moderate to severe if they are denied those services throughout their life. I have a concern with regard to how it would be done, as well as the administration of it, as Ms Duffy said. We have called for the reform of carer's allowance. It could be very simple and based on the work done and the needs of the person, without getting into grading those needs. If somebody is providing 24-7 care, perhaps that is a higher rate, for example, than somebody providing care fewer hours during the work and able to work part time, which is slightly different from looking at the level of needs and grading it like that.
Going back to the Deputy’s comment on the Minister of State, Deputy Rabbitte, I was in the Dáil when she talked about the commitment to setting up the assessment of needs centres, which we would obviously welcome. If they are not up and running by the 1 August, she mentioned bringing to budget the idea that they would be paid for through, I presume, the purchase fund. We would welcome that. We welcome anything that gets those thousands of children off a waiting list for assessment of needs and vital therapies. However, we need to see that done urgently. It needs to be addressed. We welcome the Minister of State’s commitment. We also welcome the Labour Party bringing forward the motion.
Ms Clare Duffy:
The Deputy asked a question about inadequately staffed respite. It goes back to Deputy Tully’s point on having less respite now than we had before. There is evidence of respite not having come back after Covid - it just never came back for many families. We see it ourselves in the delivery of home care. Staff is the issue across everything right now. Certainly, it has to be said that staff in respite is probably the single biggest challenge now, as it is in home care, therapies and across the board.
Ms Catherine Cox:
The lack of home care support workers feeds into the challenges that carers face in caring for their loved ones at home because many of those families rely on home care workers. We know the terms and conditions for home care workers are not very good, particularly outside of the HSE. This is a big bugbear of ours. The HSE pays its staff well, and rightly so; it pays them travel and pensions. Yet, when they are subcontracting out home care, they do not offer or afford those same good terms and conditions to third-party providers and charities like ours. One of the roles we play is providing home care workers to go into homes. We cannot recruit or retain workers. When we do, we train them and they to go on work in the HSE. That is a problem. With the new tender, we need to see that addressed.
Micheál Carrigy (Fine Gael)
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I am the final speaker. Ms Cox made the comment that cultural change is needed, and I think that is right. Probably a better understanding in society of autism and all of the associated areas around it is needed in general. We are working on it in Leinster House. A number of us have a programme to have Leinster House be one of the first autism-friendly parliaments in the world. Part of that is that all 1,500 staff – political staff, Deputies, Senators, etc. – are undertaking a training course with AsIAm in order to give us a better understanding. Hopefully, by the end of the year, all staff will have completed that and we will be able say that in this complex, which is the seat of Government and power, we are leading from the top. That will work down through society, our local authorities and all organisations and ensure that everyone has a better understanding and we get that culture change.
I wish to make a couple of points. it was stated that it is imperative that all children get the supports early enough. It is about intervention. Mark Darmody was mentioned, and we had Cara Darmody here as the youngest ever witness to appear before to an Oireachtas committee. We were able to highlight in one family the difference made by getting them supports or not getting them supports. I see it as a father of a young autistic son. We had to go privately for supports but I see the benefits to him of having gotten the interventions early.
We all spoke about the comments made by the Minister of State, Deputy Rabbitte. We must acknowledge her commitment. As has been stated, a commitment to use the NTPF to provide services is contained in the programme for Government. It should have been done before now, to be quite honest. However, the commitment is there. We have to push to put a mechanism in place to compensate parents who have to go outside the system because we have not been able to provide it as a State. Unfortunately, due to the numbers of professionals across the therapies, the reality is we will find it difficult to be able to provide it over the next number of years until we have a sufficient number of professionals coming out of our third level system who will work for the State. That needs to implemented. The Minister of State, Deputy Rabbitte, made the comment about August, but that needs to happen straight away.
With regard to the assessment of needs and the Disability Act 2005, as was referred to, what are the witnesses’ view on it? It gives a constitutional right to an assessment but it does not give a right for a service. What are the witnesses’ views on that?
I totally agree with increasing the income up to €350 and taking away that it is based on income needs rather than the needs of the person. As public representatives, we all know cases of families. There is one family who I know quite well who have two children on the autism spectrum. A parent had to give up work. The spouse is working, driving up and down to Dublin, leaving at 6 a.m. Yet, on income ground, they were not entitled to get any State support. I do not thing that is right. We have heard evidence about the significant costs involved.
I think the cost to a family associated with having someone who is on the autism spectrum is the region of €18,000 because of having to purchase supports the State is not yet providing and loss of income. Most people are not working or a partner is not. That must change.
On respite, last Friday week I was in Multyfarnham in Westmeath. The Alzheimer Society opened a respite centre to cover Longford and Westmeath for families. It is based on the grounds of the nursing home.
Micheál Carrigy (Fine Gael)
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I am from Longford.
Micheál Carrigy (Fine Gael)
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We like to think so but we have been told different. It involved thinking outside the box and it was the right way to do it. The backup and support services are in the centre and there is a whole area that will look after those in our community. We have up to 1,300 families in the two counties who have a member with Alzheimer's and we had no respite centre. Now we have. Where it is located is a beautiful setting.
Annie HoeyMicheál Carrigy (Fine Gael)
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As a child I spent every Tuesday night at the Franciscan priory for benediction.
Micheál Carrigy (Fine Gael)
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That is the type of thing we need to be looking at and thinking outside the box. It would be difficult to find another building to provide the centre but that one is physically in place. It is fantastic. Family Carers Ireland has highlighted its requests as an organisation. What are the witnesses thoughts on the Disability Act?
Ms Clare Duffy:
We are struggling with something similar at the minute. We have lobbied for years for carers to be given the right to a caring needs assessment. That is now being piloted in community healthcare organisation, CHO, 2. The moral argument is about a right. For example, in the UK, there is a right to a care needs assessment but no right to the care it states a person needs. Is that morally wrong? The Disability Act is a little like that. There is a right to the assessment but no right thereafter to the necessary interventions and supports. Other jurisdictions are moving away from that, not specifically for autism but for carers. It is being recognised that it is immoral to do an assessment and then not give what is needed. In other European countries, such as Spain, and in parts of the UK, people are saying that they need to deliver and back it up. It is comparable to the EPSEN Act in that we did not do what we said we would do.
Ms Catherine Cox:
The point was made about carers' income. Many parents describe becoming a carer as being like falling off a financial cliff. They are working and have a good salary. Suddenly a child is born with a disability or an ageing parent becomes ill and they go from a decent salary to carer's allowance, if they even get it. Only one in four carers gets it because of means testing. If they get it, it is €237 per week. No one can live on that. The idea that a spouse's income is taken into account is unjust. Care work is simply not valued or recognised. Caring will come to all of us at some point in our lives. We will either provide or require care. It is a societal issue and it needs to be a priority for the Government. I was watching Katie Hannon's show last night and two societal issues were discussed. One was homelessness and the second was carers and the lack of respite. We need to keep it on the agenda and keep talking about it, to get to a stage where carers are not only told how great they are but are truly recognised, supported and valued. That is what we are looking for.
Micheál Carrigy (Fine Gael)
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I thank Ms Cox and Ms Duffy for their contributions today. They were beneficial and apt as we will be finalising our report in the coming days. I hope we will be able to reflect their views in that report. The works that carers have done over the last long number of years has been a constant at the committee. It is important that support is recognised.
Deputy Collins has arrived at the meeting but I am due to finish the meeting as representatives of the Scottish Government are waiting.
Joan Collins (Dublin South Central, Independents 4 Change)
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That is okay.
Micheál Carrigy (Fine Gael)
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I thank Ms Duffy and Ms Cox. We will suspend to allow a change of witnesses.
Micheál Carrigy (Fine Gael)
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I welcome everyone to the second session of today's discussion. I welcome the following officials from the Scottish Government Mental Health Directorate, Learning Disabilities and Neurodiversity Team, Ms Jacqueline Campbell, unit head, autism, and Ms Suzanne Kinross, policy manager, autism. The remit of the committee is to consider matters relating to services and supports provided by the State for autistic people. The committee is interested in best international practice when it comes to international autism strategies. The Scottish autism strategy seems particularly relevant to us here in Ireland given the similarities between our two Celtic countries which also have a similar population of more than 5 million. We met with representatives of Autism Scotland at the national AsIAm conference on autism, Same Chance, held in Malahide, County Dublin, in February. Unfortunately, we did not get to travel to Edinburgh and the representatives did not have the opportunity to visit the Houses. However, through the use of video conferences, we can learn from their experience. Perhaps we will get an opportunity in the not-too-distant future to travel, meet and have further engagement with the team and also meet the minister for health in Scotland. We are also interested in the autism cross-party group in the Scottish Parliament. This is an idea we would do well to follow after the dissolution of our special committee. I send our appreciation to the Scottish Cabinet Secretary for NHS Recovery, Health and Social Care, Mr. Michael Matheson, MSP, and the Scottish Minister for Social Care, Mental Wellbeing and Sport, Ms Maree Todd, MSP.
I now call Ms Jacqueline Campbell to make her opening statement.
Ms Jacqueline Campbell:
I thank the Cathaoirleach for inviting us here today. The Minister has asked me to share her apologies as she is not free to attend today. I will feed back to her about the session.
I am a civil servant with the Scottish Government. I head up the policy unit that deals with policy for people with learning disabilities and autistic people, but is now taking a broader neurodivergent approach as well. I am here with my colleague, Ms Suzanne Kinross, who is the autism leader within the team. This portfolio, as members have heard, sits within health and social care in the Scottish Government. The Cabinet Minister is Michael Matheson, MSP, and the portfolio Minister, who we work to, is Maree Todd, MSP, who was appointed Minister for Social Care, Mental Wellbeing and Sport in April 2023, following other ministerial posts.
I will run through a few matters to give an overview, which will take a few minutes. I will first speak about the Scottish policy approach to neurodivergence. Scotland has had a learning disability strategy since 2000 known as The Same as You, which was followed in 2013 by Keys to Life. We have had the autism strategy since 2011. Those were the two main policy areas on which work was focused. There was some work on attention deficit hyperactivity disorder, ADHD, which tended to be focused around an educational context. There were certainly no firm policies on other less well-known conditions such as foetal alcohol spectrum disorder, FASD. There has been a change in approach over the past couple of years in two areas, namely, a move to having a very central role in our policy for people with lived experience and a move to a wider, more inclusive neurodivergent approach.
Before the Covid-19 pandemic, there was a separation between learning disability and autism as policies, even though they sat within the same team. The pandemic started to change that as online meetings brought our stakeholders together across both areas for the first time. That was expanded to include autistic and learning disability people-led organisations as well. This provided an opportunity to review the direction of travel and to be aware of common policy aims, as well as differences, and to build a new joint plan, Towards Transformation. That was a totally new approach to working together going forward. A leadership and engagement programme was set up with people with lived experience at that time. This was an alternative to more traditional programme board arrangements around strategies. I will come back to both of those matters.
I mentioned the Scottish strategy for autism, which was a ten-year strategy that expired in 2021. The Scottish Government commissioned an independent evaluation of the strategy, which has been done, and the cross-party group on autism at the Scottish Parliament published its own review, The Accountability Gap, which can be found online. I will speak a little bit about that. The evaluation that we commissioned concluded that after ten years, valuable resources had been created, we had some new and additional services and there was increased understanding and knowledge of autism and autistic people and what was needed for people to live a full and meaningful life. However, the evaluation also concluded that more needed to be done to meet the ambition of allowing autistic people to be supported to live productive lives. The provisions and supports needed to have greater reach and become embedded and more sustained. There were some key points that we have worked to since then.
Action had to be consistent at both national and local levels. Local accountability and progress was certainly an issue in some areas. There was funding associated with the original strategy and that was used to support a range of individual projects which were not necessarily going to be sustainable without continued injections of Government funding. The one-stop-shops which the committee will be aware of are an example of that.
There was a really wide range of actions in the strategy and I might need to focus more on key areas where significant change was needed. That was also against a backdrop of what the strategy did do throughout that period, raising awareness as well as ambition about what it means to be autistic and the real-life impact on people and their families. We understand a huge amount more today than we did in the early days of that strategy.
I mentioned the cross-party group evaluation. It highlighted that there could be a lack of accountability of services and supports at local level again and how often autistic people could not access support if they did not fit into a particular pathway through the system. Generally, this meant that in Scotland, if someone thought they were autistic and was seeking support, if they did not have a learning disability or a mental health issue then there might not be a pathway for them to get that support. That was a critical element of its work. I will come on to talk about some of the work we are doing that is addressing that.
Following the conclusion of both our learning disability and autism strategies in Scotland, we moved towards this joint plan, Towards Transformation. It emerged from the experience of everyone working together during Covid. It focuses on a smaller number of key priorities. Although it brought the stakeholders together in learning disabilities and autism, it also brought a commitment from us to continue to recognise the importance around the differences as well as the commonalities and the common threads that lay under some of that plan. Locally in Scotland, there can often be the same lead people at local level dealing with varying disability and autism so some of that is joined up at local level anyway.
Although the unit has a focus on these policies, another one of the unit’s roles is to expand that reach across government so we work very closely with people across other areas of government. That is particularly the case around education and employment, for example, where those officials would take the lead and we are working with them on different elements at times. The Towards Transformation plan drew out things across the lifespan, including health and social care issues and mental health issues but also education, employment and developing our approach to support and diagnosis. The plan also trialled the possibility of consideration of a commissioner and legislation in Scotland to help people secure their rights. Part of our delivery of that plan was through a partnership with the national autism implementation team. It is based in Queen Margaret University in Scotland and has been really instrumental in the development of our policies for and with autistic people. It is a practitioner-researcher partnership based in the university and it helps us with local knowledge, academic knowledge and so on to support our policies.
I will mention a few key areas of work in which the committee may be interested. The key areas that link back to the Towards Transformation plan are the development of adult neurodevelopmental pathways for assessment and support in Scotland; post-diagnostic support; mental health support; and also Coming Home which looks at delayed discharge and out-of-area placements. That is largely for people with learning disabilities but many of them may also have autism.
On pathways, we recognise the lack of consistent or integrated support particularly for adults coming forward for assessment, support and diagnosis in Scotland. We have been piloting work over the past year that we are continuing which looks at a stepped-care approach with support happening in the right place, preferably in a community setting, that does not rely on the availability of psychiatric support, for example. A report on that was published in February. The national autism implementation team supported us in that work. We are moving towards the creation of single pathways for neurodivergent adults to have their needs met in Scotland. That approach is already in the process of being implemented for children and young people. It is complemented by the establishment of a nationally funded post-diagnostic support system. We are also giving further consideration to a range of models particularly around local community integration in Scotland.
On mental health support, we know that preventative work and support for autistic people is really vital. We are well aware that people can suffer a severe impact on their mental health if they do not get that. My team has been working with autistic people to look at how they can make improvements in their access to mental health support through a new leadership and engagement model. That is led by autistic people and people with learning disabilities themselves. We have also had wider reviews in Scotland that the committee might be aware of around our mental health system. The Scottish Government will be responding to a full review of our mental health law that concluded at the end of last year.
Finally, on the legislation that is to be brought forward in Scotland, we are committed to bringing forward new legislation which will consider the rights of neurodivergent people and to consult on the potential creation of a commission or commissioner. That is known as the Learning Disability, Autism and Neurodiversity Bill at the moment but that terminology will certainly change. Neurodivergence is a term that we tend to use much more often than the much broader term of neurodiversity. We are working with three panels to pull the work together in these earlier stages. That includes the lived experience panel of 27 people. It is helping us to design the consultation paper and the consultation exercise which will be carried out later this year. It is very much a partnership and co-design approach and it is led by that panel of people with lived experience. That has proved to be a really exciting development for us with great opportunities around supporting our policy work.
I will stop there on my introductory points and look forward to answering questions and providing additional information.
Micheál Carrigy (Fine Gael)
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I thank Ms Campbell for her comprehensive opening statement. I call Deputy Tully.
Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I thank Ms Campbell for presenting to our committee. She has given a very comprehensive report on what is being done in the Scottish Parliament. I think it is a long way ahead of us in Ireland. There is no point in reinventing the wheel and if we can replicate some of the things that Scotland is doing to improve services for autistic people then that is what we should be doing. One of the issues of concern in Ireland at the moment is the lack of assessments and services for children who have or are suspected of having autism. We have roughly 17,000 children on a waiting list to receive an assessment and many more who have received assessments are waiting for services such as speech and language therapy, occupational therapy, physiotherapy, psychology and so on. A progressing disability model was introduced in 2021 which established 91 children’s disability network teams throughout the country but none of these teams is fully staffed because basically, the workforce planning was not done and there is an acute shortage of professionals across those teams and across many other sectors that use those professions as well. How does that compare with Scotland? Are there similar problems or has it a different method of dealing with assessment and services?
It links into education as well. While probably the majority of autistic children attend mainstream schools, some will attend an autism class attached to a mainstream school where there is integration between the class and the mainstream, which is the ideal model, and some will attend special schools. We need to ensure that our education system will be inclusive. Again, what examples of that are there in Scotland? The representatives identified a lot of co-operation across departments. That is something we need to replicate here because we often find Departments working in silos when they should be working together, as services often overlap several Departments.
The other question I have relates to adult diagnosis, which is not available on the public pathway, although a diagnosis or assessment can be privately accessed. Is that an issue? Are there follow-up services to that assessment?
Ms Jacqueline Campbell:
There is a huge amount in there. I will try to answer the Deputy's key points.
There were some significant issues around mental health support in Scotland. Work was being done pre-Covid around what were referred to as rejected referrals. Many children and young people were not getting access to mainstream mental health services. A number of changes came out of that work. In the broader mental health context, there was a recognition that it was not appropriate for some of those children to be referred into what we call child and adolescent mental health services, CAMHS, in Scotland because they did not meet the criteria for that. However, lots of other lower level things were going on - they might be called lower level but were obviously serious for individuals' anxiety - even if they did not merit CAMHS support. As a result of that, a significant amount of money has been invested in community mental health supports in Scotland. That is now being replicated for adults. It is very important to set that alongside the more formal mental health support routes because, for example, anxieties can affect autistic people. Those supports are project-based and in the community. There are lots of local projects and people are able to access that support. It is self-referred so there is no requirement to go through a process.
Also as a result of that original work - Dr. Denise Coia produced the original report - we worked in Scotland on support for children and young people. In September 2021, we published a national neurodevelopmental specification for children and young people. There is a link to that in the briefing the committee got. That is critical because it set out the aspirational standards for service providers. It focused on neurodevelopmental support in that broader sense. The idea is, as we are now piloting for adults, that we do not try to send people down a narrow path, whereby if they have a learning disability this is the pathway they go forward on to get support. It is about a broader approach recognising that people who are in need of neurodevelopmental support are likely to have a number of different things going on. They could have a learning disability and be autistic, they could have attention deficit hyperactivity disorder, ADHD, or a number of things could be going on. That specification, published in autumn 2021, has already set out those standards for children for local service providers. That went hand in hand with the injection of funding. More than £3 million was provided to our local National Health Service, NHS, boards to build capacity to allow people to implement these standards and to support professional development. We could provide the committee with more information about that. It is critical in terms of the new approach and how we intend to bolster that support for children and young people.
There are issues around workforce shortages. I will talk a little about that in the context of adults. To answer the Deputy's points on education, we can provide the committee with more information on that. In Scotland, there is a fairly long history to the educational side of things. Families and parents are probably experiencing similar issues to the ones that people may be experiencing in Ireland, particularly around autistic young people in mainstream schools who are struggling to attend and access support in such schools. A big, critical report came out a few years ago, Not Included, Not Engaged, Not Involved, which reset the relationship around schools. A huge amount of work came out of that, which looked at the use of restrictions on behaviour in schools, restraint in general and the inclusion of autistic young people in the school community. A whole load of work was done around education. An approach in Scotland, getting it right for every child, GIRFEC, applies in schools. If there are children with additional needs in a school setting, they should receive that additional support through mainstream schools. There can be issues around how that is rolled out in practice but that is certainly the backdrop.
On the situation for adults, which I touched on, we will be in a not dissimilar position to the one the Deputy started to describe for Ireland. On autism in particular, we are now seeing a whole cohort of adults who are realising they may have struggled for a very long time with some issues around how they engage socially, or different things that are going on for them, and are coming to their own conclusions that they might be autistic. As we know more about autism, this seems to have come to the fore in Scotland as well. We are seeing a huge pressure on services due to adults coming forward and looking for assessment, support and-or formal diagnosis. We do not currently have the services in most places to support those adults because services were built up around children and young people. What has tended to happen is that in some areas of the country - we obviously have local authorities, health and social care partnerships, and NHS boards in Scotland - support may be available for adults. In other areas, it is not. Sometimes, supports are available for ADHD and autism, but very rarely for both together on one pathway. Where supports are being provided, they tend to be from staff who are being borrowed from the children and young people service to provide that support. This is a fairly well-known and certainly public issue in Scotland through some of the work we have done.
There is also a link in the documents supplied to the committee to a key report that came out in February on adult neurodevelopmental pathways that I encourage members to look at. That report summarises the pilot work we did in Scotland for adults in recognition of the position where adults were not able to easily access support. It has a range of approximately ten recommendations, which will characterise the next stages of this work, which Ministers have signed off on and that we are now setting ourselves up to carry forward. That is critical in the sense that there is recognition of the gap in service and support. There is recognition that we find it is a slightly different position for adults than for children and young people, particularly around diagnosis. While we always build our systems around access to support and assessment, with formal diagnosis not necessarily being part of that, we also recognise that many adults tell us that diagnosis can be quite critical for them. Sometimes, the support adults require may be quite low but what they want is to have that formal diagnosis, for a number of reasons. There is recognition of that. A few steps are set out in that report that will guide us on our way forward. Essentially, at present, we have looked at joining autism and ADHD pathways together on a single pathway.
Certainly, the longer term aim is that this would be a single neurodevelopmental pathway for children and young people so that there would be one door and one route of access that is centred around an individual.
Pádraig O'Sullivan (Cork North Central, Fianna Fail)
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I welcome Ms Campbell and Ms Kinross. We appreciate their attendance. The document they have submitted has quite a bit in it and we are very limited in the time we have so I will fire straight into questions. I want to follow up on Deputy Tully who referenced the difficulties we have in Ireland in relation to assessments of need and the provision of therapies for children primarily afterwards. I will ask the question a bit more blatantly. Here in Ireland, children in particular are often being given waiting times of a couple of years for therapy or even to wait just for the assessment. Is the situation similar in Scotland or was it before these interventions were taken?
I note there is a significant reference to employment. There is a Fair Work First policy referenced in the briefing document. I like the way the words are used in the policy when it mentions leveraging employers' commitment to fair work by applying fair work criteria to public sector grants, for example. I like the use of the word "leveraging" there. Do the witnesses find that there is a fair compliance with that? Following on from that, I see that employers are also asked to "offer flexible and family-friendly working" to all workers from day one of their employment including those people with needs. Again, this centres around the same question: are employers fairly compliant with that? Have they bought into that or are there any difficulties the witnesses might flag with the committee in respect of that Fair Work First policy?
I will ask one final question. One of the recommendations made by the Scottish national autism implementation team referenced is to build a neurodevelopmentally-informed workforce in Scotland. Will the witness explain that for us? Is that the provision of training in public sector jobs, or across the private sector? Is it programmes that are rolled-out through universities and schools or are they built into a curriculum? I ask the witnesses to elaborate on that.
Ms Jacqueline Campbell:
First, on the situation around child and adolescent mental health services, CAMHS, and waiting times, we certainly did have the same situation in Scotland and that has not completely disappeared. Obviously the specification I mentioned and the money that accompanied that is being used to drive down waiting times. Certainly, it is also a very common situation in Scotland to have long waiting times of two years or more for a more formal diagnosis. That is what the direction of travel around the specification and the money attached to that is intended to address. I do not have them in front of me but we can probably provide the committee with the latest waiting times statistics which have just been released and show the improvements around that which are quite heartening.
The Deputy mentioned employment. We might need to follow up with him about unemployment because it is my colleagues in employment who lead that work. I can say a little bit from our perspective about the kind of work that we have done with them across government, what we are recognising as the issues, and where we think we want to be with it. Like education, employment is an issue. If you speak to an autistic person, being supported to be able to access employment and to be sustained in employment is one of the concerns. If we look at the figures in Scotland for people with what is classed under disabilities, we have a disability employment gap. There are plans around dealing with this and we have been working with our employment colleagues to ensure that people with learning disabilities and autistic people feature in the work that is designed to reduce that disability employment gap. What we find is that the people who are at the very bottom are people with learning disabilities where the employment is really extremely low. I think this is less than 20%. With autistic people, it is around 30% but is still pretty low. We know that one of the things that works consistently with employers is to have schemes around supported employment. There are different things that we would advocate and that the Scottish national autism implementation team, NAIT, would advocate as well. There is supported employment and formal schemes at one end. However, there is very much a need to ensure that the support around, for example, the autistic person, is joined up if they are in employment. Therefore, if there is a crisis or a breakdown in communication, there is an ability to work with the person to resolve that. Our understanding would be that employment for autistic people can often be difficult because even if they are supported at the beginning, it is then withdrawn and people are not able to come back into that support when they need it. One of things that NAIT is interested in and has looked at is how that support is joined up. Somebody may need an employment with the support that they might get from their health professional, for example, and how do people communicate in that multidisciplinary way when that person needs the support, and recognising that this might come in and out. There is still a lot of work to do on that in Scotland.
We published a report on supported employment last year and that piece of work was chaired by Charlie McMillan who heads up a Scottish organisation that we work with along with our partners with learning disabilities. That piece of work included a number of recommendations about how Scotland should move forward on supported employment. The Scottish Government accepted those recommendations and we are working on a plan to take those forward. That will tie in to the wider work that is being done around employment. We have policies such as one called No-One Left Behind which are meant to tie all that together. There is a piece of work that is being done around all of that which is vital. There is also mainstream employment work, there is a public private partnership with employers, and there are a lot of employers who are working directly with the Scottish Government on some of these issues through that partnership. Those are sort of key elements and we would be happy to provide a follow-up with additional information about all this.
The Deputy also mentioned that we are aware there is a need to train the workforce. That is really critical actually and it is at the heart of a lot of what we need to think about. For example, if we look at primary care and the doctors in this setting, the expertise people have around dealing with somebody with a neurodivergence could be quite small. They may not have been specifically training about that and we have had a lot of feedback through the work we have done with autistic people about experiences being really difficult when people such as GPs or whoever they are dealing with around health and social care do not understand how to relate to them. We pick that up in a number of different ways. We work to deliver formal training. That is something we need to increase, if anything. We support some of that. We are working with NAIT to understand some of the issues around the workforce and we will certainly be doing that as part of our work on adult learning development pathways. I will ask Ms Kinross to say a little bit about the work we are doing with autistic people around mental health because that brings in some of these issues around understanding.
Ms Suzanne Kinross:
We went to autistic people and asked them what their priorities were and what they needed support with most. During a survey of those responses, the strongest message of need coming out was support for mental health, obviously on the back of the pandemic. With that, the biggest thing within the mental health realm was access to the services. We set up two subgroups that are autistic-led and we called these people drivers because they are effectively in the driving seat as to pushing the work forward.
One work stream is looking at autism-informed services, and that includes how we can implement training into those points of contact around mental health professionals. We are putting training in place through our vehicle, NHS Education Scotland, NES. They have a series of courses within their model. That is fully accessible to existing staff with continuing professional development and other mandatory training they may take on as they move into certain posts. The preference is that we get to a level where, depending on what a person's work involves, he or she will be at either an awareness level, an informed level or a more expert level, depending on that person's exposure. Various work is happening there. We also are pushing into training for new staff, for example, for GPs and new doctors.
The other work stream, which had similar thinking about that point of access, wanted to take forward specific work on GP practices. That has expanded into the first point of contact if a person has a mental health issue. That might be a matter of calling our NHS 24 service, which is a 24-7 call centre that a person can ring for support, and trying to look at different ways to access that, such as chat functions, so that it is not phone call driven. There is now a mental health hub within that whole thing. It may be the case that you are phoning because you cut your finger, or you may be directed to something specific around mental health issues. Within that team, we are putting training in place for better autism-informed staff. There is an appetite within those services to do that.
The other point of contact is the GP, the helpline or the ambulance service. We are working with the Scottish Ambulance Service to try to work with their staff. Autistic people have said that a barrier to them seeking help and gaining support is that preliminary access point. Those are being led by autistic people. The outcomes from that are that we are looking to produce some resources such as videos, posters and different assets to explain the autistic journey in, for example, a GP service. For example, this is a matter of making sure that the receptionist understands what it is like for an autistic person to try to be on the phone, to wait on the phone, etc. It is trying to bring a level of awareness to all the different elements of staff. The resources will come out of that. We are very interested in how that is progressing. The Minister met with the autism groups and there is a similar channel of work stream for people with learning disabilities. She heard directly from them recently. She is very supportive of keeping that work going and looking at what resources will come out of that.
Mark Wall (Labour)
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I thank Ms Campbell and Ms Kinross for joining us today. Everything they have said has been very informative. A couple of my questions have already been asked, but I would like to tease them out a bit more. On the assessment of need, it has been brought to our attention that the assessment of need in other jurisdictions has a legislative base in exactly what it contains. Is it the case in Scotland that an assessment of need is defined through legislation? Will Ms Campbell comment on that?
My other question is in relation to school places. Regarding school places here, we have special educational needs officers, SENOs, who help parents, etc. How does it happen in Scotland when there is a diagnosis or when a loved one has an autistic child? Do they get in contact with a local school authority which gives them a series of school places? Do they work directly with the parents? Will the witnesses talk us through how that happens, that a school place is identified for that autistic child?
My final question is in relation to supports for parents. We have many excellent support groups for parents right throughout Ireland at the moment, many of which are dependent on fundraising, etc. In Scotland, are there such parents' support groups? How are they funded? What are the outcomes of those parents' support groupsvis-à-visworking with the Government, autistic children, etc.? Will the representatives comment on their experiences in relation to support groups for parents?
Ms Jacqueline Campbell:
We will probably come back and give the Senator some additional information in writing about the legislation. We have broad, overarching legislation on health and social care in Scotland that gives people a right to care. There is nothing I am aware of that would specifically address the point the Senator has set out around a right to that assessment. The way that is covered is more around the process I had been speaking about earlier about the specification that is being set out locally for standards we are monitoring people against. That is not legislative, however. That is a direction to local areas to set up services that will deliver on that set of standards. That is where things sit on that.
I mentioned that legislation will be coming forward in Scotland. There will be a big discussion and debate over the rest of this year on the kind of rights that Bill should contain. This will include whether we end up having a commissioner, which would be about accessing and supporting those rights. There will a big discussion about what rights we should include in that Bill. That Bill will be specifically for neurodivergent people. There are a range of ways it may go. The view from our recent panel of people with lived experience was that the Bill should include all neurodivergent issues.
This is obviously a significant issue also because it interacts with a range of things that are happening in Scotland at quite a significant level at the moment. We are bringing into Scots laws some of the UN treaties. The treaty around people with disabilities is being incorporated into Scots law, which is a significant move. We are looking at that regarding what will end up in our Bill. We have other major pieces of work going on that interact around the rights piece. One is the review of mental health legislation, which I mentioned earlier, and the establishment of a national care service in Scotland. All these things are pretty significant and linked.
The Senator also asked about school places. There are different processes that parents have to go through locally if they are looking to place a child with more significant needs into a non-mainstream school environment. I will probably have to come back to the Senator to set out the process around that. A majority will be in mainstream schools. There are limited numbers of places in those special school arrangements. That would probably have to be funded locally by a local authority, so there would potentially be different processes in different areas for how that would be accessed.
A majority, as I say, are in the mainstream. That is why the work that was referenced by one of the speakers around education has been significant in terms of ensuring that experience that people have in mainstream school is acceptable. That has actually not got any easier with the intervention of the Covid-19 pandemic, because the experience in Scotland will be the same as elsewhere for autistic young people. Often, there can be a benefit in not having to go physically to school. There was, however, a knock-on effect that happened after Covid-19 where that disruption for all children and young people was certainly magnified for autistic children and young people. School refusing can be a really major issue for parents, as can being able to access enough of the right kind of support.
In terms of support for parents, we are really aware in Scotland of mental health, sitting as we do within the mental health directorate. The community supports I mentioned earlier are accessible by parents because we are recognising that you have to strengthen that family unit, because if that front-line support for parents is not there and parents are not supported themselves, then it is very unlikely that they will be able to continue to feed that support to their children. We certainly recognise that. As with the other things we are doing on autism, it is a developing story for us as well around issues like post-diagnostic support.
We have a patchwork of things going on. For children and young people, support for them and other parents will be accessed through the school and an educational context so there tends to be that three-way relationship between: the school; the professionals in CAMHS; and the family and the children and young people. More often than not it would be built right around that educational context and different areas of the country will have different supports available with different amounts of funding going into them. That is when we are specifically talking about support for autistic children.
What we also have from the work my team does is we have, from Covid onwards, a limited support that we call post-diagnostic support. It is not strictly post-diagnostic, however. That has included support for parents of autistic children. We have had that in place, we have run the pilot over the last couple of years and we extended it because of Covid. Now we are transitioning to a more formal post-diagnostic support scheme which will kick off this year. We are supported with £1 million from programme for Government funding, which is a start and it is allowing us to think about criteria for that fund and what kind of support we want to put in place. Additionally to that, through one of our main third sector charities in Scotland, Scottish Autism, we fund its advice line. That advice line is a significant source of support for parents. Scottish Autism has seen calls to that line increase exponentially since Covid and that is why we support that work. It is not perfect but we have a number of things we are trying to do and promote.
Joan Collins (Dublin South Central, Independents 4 Change)
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I welcome Suzanne and Jacqueline. The witnesses have covered a good bit of what I would have asked. I want to ask two questions, the first on workforce planning. How is that being dealt with as services are being expanded in Scotland? Are there special educational processes that are being set up to get more therapists into the service? Second, is respite run on a charity basis or is it done on a public health basis through the NHS? What sort of respite is available for people with disabilities, including autism? Those are my two main questions.
Ms Jacqueline Campbell:
I may not be able to give the Deputy full answers to both of these questions. On the second question on respite, that generally tends to be available through local arrangements. Through the health and social care partnerships, local authorities would make respite arrangements in a way that people would be able to take advantage of them and that will likely vary across the country. We will probably come back to the Deputy with more information on respite because I do not have more information with me about the local arrangements.
Workforce planning is an area we have not really gotten into yet in Scotland. Part of the reason we did the pilot work on adult neurodevelopmental pathways was to look at what we might need to do around planning for the workforce in Scotland. We touched on some of the issues in the general workforce earlier, including how there might be a lack of knowledge and understanding and how we have to look at the training around that. That is one of the things we want to do.
Second, through the adult neurodevelopmental pathways work we have looked at which elements of the workforce should be doing that assessment support and diagnosis. Similarly for children and young people, there is not necessarily a need for a psychiatrist to be doing that work. The work we piloted and the additional work we want to do around that is specifically looking at other elements of our multidisciplinary team that can perform that role, particularly in the community setting. We have had some early discussions about primary care in Scotland. It is not feasible, with the constraints around primary care, to simply add in another workload of doing those assessments for GPs. However, there are things that have been trialled in Scotland that might be located within practices in primary care or in communities, where much better use is made, for example, of nurse-like services; allied health professional services; and occupational therapists and all of their goals and how they would be able to support people in that community setting. That is what we are looking at for adults. We are looking at how we can use those elements of the workforce.
That is some of the work we have looked at through the pilots and that is in the report that came out in February. Part of our next steps in thinking about how to take that report forward that is set out in the recommendations is what that then means around workforce and workforce planning. Often in Scotland the workforce that delivered on this work is the same workforce that is working in and around mental health. We are working with our colleagues who have been doing workforce planning in mental health to try to bring that together a bit. We are just at that point now and this is definitely one of the things that needs to be considered going forward.
Pat Buckley (Cork East, Sinn Fein)
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I thank the witnesses; they have covered an immense amount of ground. I have two questions and the first is on primary schools. It is normally the astute teacher who spots something wrong with a child. Does Scotland have any early intervention plans, services, follow-ups or paths in the primary school?
I am interested in the following issue. In Ireland we do not mix autism and mental health, especially not within CAMHS, whereas Scotland has taken a totally different and more open approach to it. How is that received? It seems to be a barrier in Ireland that if a child needs an assessment of need but does not have mental health issues then they go down one path. However, if they have mental health issues they cannot go to CAMHS. How was that barrier crossed in Scotland?
Ms Jacqueline Campbell:
I will answer that and Ms Kinross will come in on the education point. This is the issue and what has led to all of the work I mentioned about the specification for children and young people and what we are trying to mobilise around adults as well. You cannot separate a person into different pieces. What we have always done and what Deputy Buckley will no doubt find is that if you have a system, supports and services are set up and that is what you have. You can have this pathway and that pathway but it is not designed around the individual. That was the case in Scotland as well. There might be a mental health pathway and then you might have a pathway around learning disabilities, for example, that is more developed.
It is quite interesting because that issue of the joining up of autism with learning disabilities has been quite a controversial one in Scotland. For many of us - and I am talking about many of the autistic adults we work with who have come through this system - they were often told they should not receive support unless they had mental health issues or learning disabilities. Part of the reason why learning disability policy and autism policy were so separate for so long is down to that issue. They were seen as almost competing. We have moved a long way past those barriers and that is down to a lot of dedicated work with autistic people themselves, who often, and understandably, carry a lot of trauma from the experiences and lack of support they have had. There is a lot of distrust of systems and of local and national government because of those issues. We have had to work extremely hard with people to allow them to express that and to be able to move past it.
Certainly, that is the approach we would like to take in regard to adult neurodevelopmental pathways. As I said, the Minister has approved the report and the recommendations it contains. It is all about a move towards a single neurodevelopmental approach whereby somebody can ultimately receive the support they need when they need it, without having to identify with a specific condition, for example.
I might ask Ms Kinross to address the question about education.
Ms Suzanne Kinross:
On early intervention in education of younger children, this can include nursery age as well as primary school age. We looked towards what others were doing and found a social communication, emotional regulation and transactional support, SCERTS, model. It was pioneered in the US, and the founder presents to our educational practitioners quite regularly. We have now educated more than 4,000 younger and early years teachers in the use of this model. It is also used in England, Australia and various other places. If the committee has not heard of it, I can send members some information on it.
Through our national autism implementation team, we have a specific education channel. It will bring together teachers throughout local authorities to take the courses and it sends out resources to help apply that. It is a very child-centred approach but it gives teachers tools to recognise issues and work with the children on their terms. It is not force-fitting children into a way of behaviour but seeing what adaptations can be made around the child and in his or her environment to allow him or her to participate in education in a more effective way. That is something we are pioneering to tackle those early years.
Ruairí Ó Murchú (Louth, Sinn Fein)
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I thank Ms Campbell and Ms Kinross. What we have been hearing is very positive. The notion I got from their opening statement and answers if that everything, from legislation to therapies, whether in or out of school and wherever else, is done on the basis of a feedback loop that is constantly checked, refined and so on. There is no perfect system. A system may make sense but that does not necessarily mean we will have always progressed with it since.
I like the idea of everything going through CAMHS. Some of my party colleagues spoke about the difficulties we have, siloed operations and so forth. Neurodevelopmental pathways are in line with the no-wrong-door policy, whether that is CAMHS or adult services. The witnesses spoke about universal or general services in the community. How does that happen if somebody does not fit the criteria but still needs a service? We are all fed up of dealing with people who have exited services, and that is while recognising that some of these services are doing an awful lot of good work but are under severe pressure.
There was a reference to a neurodevelopmentally informed workforce. That relates to training and places being created such that autistic people can participate in the workplace and be all they can be. It is that wider question of having assessment all the way through to the support aspect once there has been the correct diagnosis. As regards workforce planning, we hear that throughout the world, there are not enough speech and language therapists, occupational therapists and so on. Scotland also has this problem now. I think some of the issue relates to the siloed way we deal with this and to the fact we have not had a real conversation about what best practice assessment and therapies are and where they should be. That would take in the school aspect in particular, although I am not sure we have done that. Where does Scotland have difficulties and where has it found these specialists? We cannot magically create speech and language therapists and occupational therapists. I am not saying a teacher or a special needs assistant can fit the place but a lot of them will have seen best practice and implemented best practice and may have done a good deal of heavy lifting. I know this has happened in the case of my autistic son and probably saved us from needing other services we may not have got.
Where is Scotland with assistive technologies and follow-on therapies in general? In some cases, they involve training parents rather than dealing daily with kids, so certain technologies can facilitate the child, the parents, the teachers and whomever else, such as augmentative and alternative communication, AAC, and even the rapid prompting method, RPM. In the case of people who are non-verbal and for whom many of us would have considered there was no appropriate intervention, we have seen magical scenarios where people have been freed from what can only be described as a brutal jail.
Ms Jacqueline Campbell:
On how people access support and the various routes to that, generally in Scotland, the most likely place a parent looking for support would go to is the GP in primary care. After that, the pathway approaches being taken are changing. In the past, if someone pitched up looking for support for a child considered to be autistic, there might, for example, be a long wait. The parent might be directed to websites to look at but there would be a wait for the assessment to be carried out, which would normally be within CAMHS itself to determine whether the child met the criteria.
That has changed somewhat with the introduction of the specification to make it easier for people to access support and to ensure they access the correct kind of support. There will be children and young people who need that support through CAMHS and there may be others who, once assessed, may not get that support. The assessment might be carried out by the community mental health team as a step before CAMHS and a decision might be taken there, in conjunction with the family, about what kind of support the young person will need. As I said, where we are with that is that a number of different resources are available locally. If, for example, there are high levels of anxiety, as there can often be for autistic young people, some additional routes of support in the community, funded by the Scottish Government, provide an alternative to mainstream CAMHS supports, so there is somewhere else for both parents and young people to self-repair and get that support. That is a very positive development in Scotland.
I mentioned some of the additional supports that are more autism specific and which we have in place as a team. There is also the work I referred to called post-diagnostic support, although that is not the best term for it given it is not diagnosis dependent.
However, that is another way for people to receive support. That has been a combination of things. In the pilot stage, it has applied to children and young people, parents and adults. It provides, for example, one-to-one support or group sessions, particularly around autism, routes for people to access information about identity, what it means to be autistic and what kind of support you might need in life. There is a number of things there. I mentioned the advice line earlier as well. Those are examples of some of the routes.
There would be slightly different routes, obviously, for families where the child or young person has more significant needs. We often see that where children or young people also have a learning disability. We have well-established routes in Scotland for people to achieve support if that is the case. With learning disability, we also support a charity called Promoting a More Inclusive Society, which works closely with families who have children, many of whom are now adults, who have severe needs. They may have blind disabilities, physical disabilities and-or autism. We work with them too. That probably gives the committee a bit of a flavour.
Around workforce planning, as I mentioned, this is an area that we need to do a lot more on in Scotland. We have done some work. I would say it is smaller scale, to be honest. For example, in the national education health board in Scotland, we do work and we fund work for professionals in health around looking at profound disabilities and autism. It is about that neurodevelopmental-informed workforce. For example, NAIT has run training for health professionals that looks at cognitive behavioural therapy, CBT, on our behalf. CBT, if delivered to autistic people, has to be adapted. We are trying to expand the knowledge of how to make those adaptations in order that that can go further.
We certainly see the need, as we do in many other areas, for a multidisciplinary team approach. I mentioned how we see that panning out in the future around the kind of professional roles that there might be. We will likely encounter in many areas of the workforce, for example, around mental health, issues around the availability of those professionals, the number of people that are coming through higher education, and people who are retiring and not being replaced. We would have a similar set of issues to those that Ireland has. I cannot give the committee a breakdown at the moment of how that would pan out among those different professional groups, but, certainly, as I say, we recognise that we need to do more work in respect of this area.
Deputy Ó Murchú mentioned assistive technologies. I have not really got a lot of information on that. Attention deficit hyperactivity disorder, ADHD, is an interesting one in Scotland because the work around adult neurodevelopmental pathways originally came out of concern about adults with ADHD specifically not having support. That is why that work has then developed into ADHD and autism and then into a broader neurodevelopmental approach. Also, in Scotland, we would recognise that that is needed because there are gaps around support around ADHD. I cannot say an awful lot about that. We will see if we can come back to the committee on information about assistive technologies and how that might be made available. I do not know what the arrangements would be across local authorities for that.
Another area around technology - I do not know if it is of interest - for us, certainly, is more around housing and how we can use assistive technologies in housing to support people who may have additional needs. For example, that is a topic of conversation around the work that we are doing whereby we are trying to get people back to their local communities. These people may have been the subject of delayed discharges for a long time or they may have been accommodated in a out-of-area placement, that is, in a different area to their home area in Scotland or, in many cases, in England. In the context of the kind of housing that individuals sometimes need there, technology is certainly an issue. There have been some nice examples in Scotland through third-sector charities working with local health and social care partnerships where there were sorts of core and cluster-type housing being set up with assistive technologies.
Micheál Carrigy (Fine Gael)
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I thank Ms Campbell.
Ruairí Ó Murchú (Louth, Sinn Fein)
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Gabhaim buíochas libh.
Micheál Carrigy (Fine Gael)
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I have a few comments and questions. As Ms Campbell probably knows, Scotland was way ahead of Ireland with regard to a national autism strategy. Scotland has learned from issues of concern that came up from that strategy and is now moving forward with positive changes. We as a committee have been looking at some of the work that Scotland is doing and that is why we wanted an opportunity to meet with Ms Kinross and Ms Campbell and discuss it. We see a lot of very positive policies being implemented there.
I have a couple of questions. Maybe they would expand on the idea of the role of the commissioner and where that would sit as a position, and how the all-party group that is currently sitting works. Ms Campbell mentioned local authorities. They have a different system there than we have here where. Although we were looking to make changes with our Healthy Ireland programme based on the staff within the local authority, the local authority would not have as strong an involvement here as they have in Scotland. How is that working? Is it working in a positive way?
We only discussed the assessment of needs issue, long waiting lists and the lack of professional staff at our previous session this morning. Where is Scotland nationally with regards to those lists and, indeed, what number of qualified professionals are there to work within the health system?
The way people use language is important. In addition, the autism spectrum is so wide that there are some children who are non-verbal or minimum verbal. Some organisations feel the word "severe" autism should be used. In America, in the Centers for Disease Control and Prevention, CDC, that term is used for those who need 24-hour care, etc. What is Ms Campbell's view on that? What language is used in policy in Scotland?
Ms Jacqueline Campbell:
First, I will address the point about how does it work with the local-national split. We have a situation in Scotland where we have, obviously, Government Ministers responsible for national policy decisions, we have boards delivering healthcare and there is a statutory relationship between Ministers and health boards where Ministers can direct health boards to do certain things and there will be key performance indicator, KPI, targets that health boards have to delivery. I guess there are levers that govern that relationship. Then we have health and social care partnerships which are joint-funded between NHS boards and local authorities. That was the move in Scotland to recognise that there was a need to bring together that health and social care environment and health and social care partnerships, as the Chairman probably knows, were the result of that. There is a very different relationship with health and social care partnerships that does not have the same kind of statutory backing. It has statutory backing but not in the same way as the NHS boards.
Generally, for the work that we are doing, it is health and social care partnerships that we work with. For example, many members of my team take part in a network which has somebody from each of those health and social care partnership who leads on learning disability and autism locally and they all come together on a regular basis. We take part in that. We share information. That is the operational level. We have quite strong relationships with people.
We find that group of people are certainly very committed to the work they do. There will be challenges and barriers and things they want to raise with us but that is a very positive relationship. There is also a formal network around the chief officers of health and social care partnerships, with arrangements for ministers and officials to engage with those networks regularly. That is all very important to that relationship. There can be issues around funding underlying the relationship, and that is jointly delivered to the health and social care partnerships, HSCPs, local authorities, and boards. That is that environment. As I mentioned, when the review of the autism strategy was done, one of the criticisms was that there was not the accountability there, particularly locally, to make changes. That can often be about funding and some of that is still there. Regional funding has been limited and so people have to make decisions locally about how they do that. We would not necessarily always have a statutory lever through which ministers could direct those HSCPs to ring-fence funding in a certain area. That is not how it would work. The work we do is very much partnership focused, understanding the constraints and trying to work together to address those. That is on that point.
The Chair asked a question about the cross-party group. We engage with a number of cross-party groups in the Scottish Parliament. There is a very active cross-party group network in the Scottish Parliament and quite a large number of those groups. The model is generally that those groups tend to have a secretariat that is delivered through a third sector organisation. The autism cross-party group is, I think, Scottish Autism and the National Autistic Society jointly.
Ms Suzanne Kinross:
Two major charities have historically been the secretariat for that cross-party group. After the last AGM earlier this year it was decided that the autistic voice needed to be part of that secretariat, so some autistic-led organisations now also contribute to that. Their role is to consider what key topics are representative of the membership of that group. It comprises a lot of autistic people themselves and parents of autistic children. They meet every couple of months and the secretariat brings in experts to talk about different things, be it on the subject of education or, as at the last meeting, on mental health. Social care will be a topic in a couple of weeks. The secretariat brings people in, co-ordinates that, and has an accessibility meeting two weeks ahead so that autistic people can contribute fully to the meeting because their needs have been addressed in the best way for them to communicate.
Ms Jacqueline Campbell:
It would be well worth the committee engaging with the cross-party group. That is run by the Scottish Parliament and independent of the Scottish Government. The minister is invited to address that group from time to time and-or officials like ourselves can go along and make presentations to the group. I have done that fairly regularly. They make their own independent assessment observations of the work we are doing, for example.
The Chair asked about the commissioner. There is a commitment to a piece of legislation in this parliamentary term with the aim to consult publicly and widely across Scotland near the second half of this year. We are working with panels, including a panel of people with lived experience, to help us to design and deliver that consultation paper and exercise. The debate around the potential commissioner has been really interesting. The campaign to have something on the Statute Book was led by three main national charities in Scotland. They are Enable Scotland, that represents people with learning disabilities and autistic people, Scottish Autism and the national Autistic Society. They successfully campaigned to have legislation brought forward and saw a commission or commissioner as part of that. There are a range of views on the commission or commissioner and whether that is the best way to go, so we definitely need to consult on that and other models to see what the consensus is. There is not a consensus view on that in Scotland at the moment. The main charities are very supportive of a commission or commissioner, but that is not shared universally by, for example, autistic people-led organisations at the moment.
In the past month we had a discussion with our lived experience panel and that panel has autistic people, people with Asperger syndrome, ADHD, and learning disabilities on it. We advertised for that panel, so we specifically wanted to draw people in who did not have an association with existing organisations, who were individuals we maybe had not worked with before. That has been really successful and working with that group of people has been a very energising and exciting process. They have had an initial discussion about a commission or commissioner. Generally, there is more of a consensus towards the benefits of that than not, and that is where we are at the moment. That will be one of the key themes that we need to explore and that will run through the consultation. That is where we are on that.
I probably cannot add much to what I said already about workforce planning. We have a piece of work to do around this. We know from the work we are doing on pathways what we are not trying to do in terms of the support for neurodevelopmental assessment. We are not trying to increase that through psychiatry and psychology. We are trying to look at multidisciplinary teams that are more nurse-led, NAIT, and OT inclusive where we can use those elements of the workforce to provide that. That is work we will do as a result of the report that was published in February.
There was, interestingly, a question about language, which is a huge issue, for autistic people in particular. It has come up around the Bill. The Bill's title will not be chosen until it goes into Parliament, and it is called the learning, disability, autism and neurodiversity Bill, which was kind of a tag put on it originally but we already know and appreciate that neurodiversity is not the right language because neurodiversity is often aligned to biodiversity as a wider concept that includes neurotypical people as well as neurodivergent people. It would probably not be the appropriate terminology around the Bill. We had a whole discussion about language with our lived experience and other panels, and it is something that will have to come to the fore for us because we need to reflect it in the Bill. We tend to find that autistic people in particular are generally comfortable with the term "neurodivergent" so I tend to use that a lot because I know people are comfortable with it, and it has certainly come to the fore. A couple of variations of that have been suggested around the Bill discussions we have had. We find people with learning disabilities are currently less comfortable with that language. They like to be described as people with learning disabilities, the neurodivergence tag is newer to them and maybe people are a bit less comfortable. It is a developing conversation around language but one we need to try to get right for the Bill. What we know is that people do not want to be described in a way that is very deficit-led, and people are not comfortable with us talking about neurodevelopmental support, for example, outwith a more medicalised context. People want us to follow the social model around disability, not a medical model, and we want to see that reflected in the language. That is the challenge.
Micheál Carrigy (Fine Gael)
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I thank Ms Campbell and maybe having a discussion or forum to discuss language to see where best people are comfortable is something the committee needs to do. Before we finish the meeting, waiting lists for assessments and services are an issue in Ireland, as is the lack of professional staff to carry out those assessments or provide the interventions needed. What is the current situation in Scotland?
Ms Jacqueline Campbell:
That is an area where, as I mentioned, through the specification which was rolled out out around the child and adolescent mental health services, CAMHS, additional funding could be directed at workforce to allow action to be taken on the waiting list. That is what we are seeing and probably what we will do. After this call, we can provide the committee with the latest figures which have been issued around that so that it can look at the impact of the funding.
That would probably answer the Cathaoirleach's question there. Currently, we are obviously in a different situation for adults. We are driving forward with this work but at the moment it is very patchy across the country where adults would be able to access support. That is why we are taking this additional work forward.
Micheál Carrigy (Fine Gael)
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I apologise to the committee as I had to leave to attend the Chamber for a few minutes. I thank Deputy Buckley for taking the Chair during that time. I thank our witnesses sincerely, both Ms Campbell and Ms Kinross, for the very informative contributions they have given to our committee members today. It is very beneficial to hear what their views are which arise after having had a strategy for ten years, looking back and seeing where they believe they made mistakes, and then changing things. That is where we want to be. We are in the middle of developing our own strategy and we want this strategy to be best practice to make positive changes for those on the autism spectrum. We would welcome the information which Ms Campbell said she would forward to the committee also.
We will be finishing up as a committee in the next number of days and we will be presenting a report to the Government, which we will launch on 14 June. Hopefully, there might be an opportunity - as it is something that I feel strongly about as Chair - to drive to make changes. We have had a very hard-working core group on this committees and want to oversee and ensure that our report and recommendations are carried out. I would love us to have the opportunity to discuss this issue again with our guests as such discussions might be mutually beneficial. Ultimately, it is all about making positive changes for those young children and adults on the autism spectrum. I thank our guests again sincerely.
In accordance with the orders of reference of the committee we will be holding a final meeting at 10 a.m. next Thursday, 1 June. We will then launch our report on Wednesday, 14 June in the audiovisual room at Leinster House at 10.45 a.m., followed by refreshments with those who have been invited to attend at 12 noon.
I sincerely thank everybody who has appeared before this committee. We have had 23 full three to four-hour public sessions over the past 12 months, including another additional 13 private session meetings. As members, we have put a very significant amount of effort into the committee in giving the opportunity to as wide a number of people as possible to meet with us and to talk about their lived experience. These are too numerous to mention but I would refer back to our day in the Seanad Chamber, which was a first for the Houses of the Oireachtas, where autistic people themselves came in and told their stories, together with those of their parents. It was a very emotional day for all of us involved. I again thank Ms Campbell sincerely; she has been the final witness at our public meetings.
Perhaps, just because it is our final session, I will ask the members if they wish to make any final comments.
Pat Buckley (Cork East, Sinn Fein)
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Very briefly, I wish to thank the Chair, the secretariat and everybody else who has been involved in this committee. This has been a whirlwind where I have learned so much but I want to learn and do more. I think of all of the witnesses and I see how far behind we are. This gives us more momentum to drive on. We learn by sharing ideas and listening to witnesses. It has been a complete honour to be part of this committee but I do not believe that this committee will go away because the people who have been on it have also been amazing. They have forged friendships and trust. We all want to go in the one direction and once we have that plan, there is no point in us or anybody else trying to stop it. I thank the Chair.
Micheál Carrigy (Fine Gael)
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I thank Deputy Buckley.
Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I thank the Chair, Mr. Bollins, the committee clerk, and all of the staff here for all the work they have done and are still doing in preparing the report. I also wish to thank all of the witnesses who appeared before the committee and so many who shared their experiences, especially those who shared their lived experience. It is sometimes not easy to come in and talk about the difficulties and the challenges they face. They do it and open up their lives to us because they want to see positive change, not just for themselves but for everybody else.
This committee has done a great deal of work so far and I am very hopeful that the recommendations in the report which Mr. Gordon is putting together will be an excellent one - I am aware that a little bit more work has to be done on this - and that it will be adhered to. We need to see things moving forward, to see legislation and to see real constructive change made in how autism is viewed. It is not just about awareness but acceptance of autism in our society at all levels, among children, in education, in employment and in our community. Much work has to be done but a lot has been done, at the same time. We are on the right path and it is just a question of keeping on that path to see something really fruitful coming from this committee. I thank the Cathaoirleach.
Ruairí Ó Murchú (Louth, Sinn Fein)
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I would like to publicly thank the Chair, the secretariat and the members who have obviously facilitated me, an interloper who has at times taken over this committee where a fair amount of leeway has been given. It has all been said. A great number of very impressive witnesses have appeared here. This included autistic people themselves, advocates and people similar to today's witnesses with the absolutely necessary knowledge of this area. The whole idea is about us putting best practice into this report. This is not 1 million miles from where it needs to be. It is all very well and good having a perfect best practice report but is vital then to ensure that we have the legislation to underpin all that is necessary. Beyond that, we must also ensure that we do everything, from service provision right through to making our society more inclusive because this is about providing for citizens and their rights, so that these rights can be all that they can be. It is not only about giving the support to those citizens but to their wider family also. We will all benefit as a wider society in doing this.
I believe Deputy Tully was trying not to say "a lot done, more to do".
Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I started saying that but stopped myself then.
Micheál Carrigy (Fine Gael)
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I must concur with that comment that a lot has been done and there is more to be done. On my own behalf I thank the members who have put a very significant amount of time into this committee. As I already said, this is our 51st or 52nd meeting; we are perhaps the busiest committee in Leinster House, to be quite honest, over the past 12 months. There has been a very significant commitment from members. We all want to continue that to ensure that the recommendations we make are implemented.
I thank Mr. Bollins, Ms O'Donnell, and Ms Dignam Healy who is not here. She got married in the past week and we congratulate her. I also thank Mr. Gordon who has been ever-present here since the beginning of the committee. I thank them all for their work on this committee and their support to me in my role as Chair. We probably challenged a few things with regard to witnesses, and having the youngest witness ever at an Oireachtas committee. I am aware that we had to push that one a little bit. We had the day in the Seanad Chamber also, etc. It is all about making beneficial and positive changes for those on the autism spectrum. I thank the secretariat and all of the backroom staff sincerely, together with those working in the information technology section and the cameras.
Our committee is now adjourned until Thursday, 1 June at 10 a.m. when we will resume in private session in committee room 1 and remote access will be provided.