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Joint Committee on Autism debate -
Tuesday, 20 Sep 2022

Autism Policy: Discussion (Resumed)

Good morning. I would like to welcome everyone to this public meeting of the Joint Committee on Autism. We have received apologies from Senator Garvey. Before we start business today, I would like to read some formal notices and the Covid-19 code of conduct. The Ceann Comhairle of the Dáil, Deputy Ó Fearghaíl, and the Cathaoirleach of the Seanad, Senator Mark Daly, published a Covid-19 code of conduct for the parliamentary community in May 2022. Members, staff and visitors are requested to continue to be vigilant and follow public health advice on preventing the spread of Covid-19 infection so that we can continue to manage risk for ourselves and for others who are more vulnerable, including colleagues and their family members who may be elderly or have underlying health conditions or both. All members of the parliamentary community and visitors are strongly encouraged to wear face masks, not a visor, in busy or crowded locations in the Leinster House complex.

Medical grade masks should be worn wherever recommended by public health advice, and for ten days after a diagnosis of Covid-19. This will help to reduce the risk of Covid-19 spreading among the parliamentary community. I ask for everyone's full co-operation on this matter.

On privilege, I remind members of the constitutional requirement that they must be physically present within the confines of the place where Parliament has chosen to sit, namely, Leinster House, in order to participate in public meetings. I will not permit a member to participate where he or she is not adhering to this constitutional requirement. Therefore, any member who attempts to participate from outside the parliamentary precincts will be asked to leave the meeting.

For the information of the witnesses, I wish to explain some limitations to parliamentary privilege and the practice of the Houses as regards references they may make to other persons in their evidence. The evidence of witnesses physically present or who give evidence from within the parliamentary precincts is protected, pursuant to the Constitution and statute, by absolute privilege. They are reminded of the long-standing parliamentary practice to the effect that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable or otherwise engage in speech that might be regarded as damaging to the good name of that person or entity. Therefore, if witnesses' statements are potentially defamatory of an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such direction.

The first item on the agenda is the minutes from our previous meeting, the private meeting held on 14 July 2022. These minutes were already approved at a virtual private meeting but I ask for their approval in public session. Is that agreed? Agreed.

On behalf of the committee, I would like to extend a very warm welcome to the parents' groups who are with us today. We are joined by Ms Ger Kenny, Ms Ciara Jones and Ms Caroline Poole from the Autism Support Hub based in Luttrelstown in Dublin; Ms Margaret Lowndes from the Dublin 12 Campaign for Autism Inclusion; Ms Karen O'Mahony, CEO of the Rainbow Club in Cork; and Ms Sarah Murphy, Ms Miriam Jennings and Ms Elaine Jenkins from the special needs schools and classes. We are very grateful to our witnesses for taking time out of their schedules to contribute to the public session of the joint committee on autism. We are particularly grateful as it can be particularly challenging to make arrangements, especially during school time.

The committee is pleased to hear directly from parents today as they have first-hand lived experience of the challenges associated with accessing assessments, school facilities and, indeed, services for their children. It is imperative to the work of this committee that we hear from families of autistic persons and to ensure their views inform our committee's final report. Before we hear from our witnesses, I propose that we publish their opening statements on the committee's website. Is that agreed? Agreed.

We will now hear opening statements from our witnesses and we will then have questions and answers with members. I propose that each organisation represented here has five minutes to make its opening statement. Each member will have five minutes for questions and answers. We will call members in accordance with the list we circulated. If there is time afterwards, members may ask additional questions. As this session is scheduled to last a full three hours rather than a split session of one and a half hours each, I suggest we take a five-minute sos, roughly one and a half hours into the session. Is that agreed? Agreed.

First, we will hear from Ms Ciara Jones from the Autism Support Hub.

Ms Ciara Jones

We would like to thank the Chair, Deputies and Senators for the opportunity to speak to them today. Ms Kenny, Ms Poole and I are from the Autism Support Hub, based in Dublin 15. In the first instance, we are here today as parents of autistic children, and second as advocates trying to make a difference to help and support families. It is important to say that while today is a great privilege, we, as parents, should not have to be here, but the sad reality is circumstances necessitate this due to the blatant failures of the State to provide basic supports for our children. We, as individuals, have to constantly fight, fight, fight for the basic supports for our children to allow them to prosper and grow to reach their full potential. This should not require a battle.

Back in 2020 I decided to set up the Autism Support Hub, and with the support of three other mothers, two of whom are with me today, we set out on a journey that has been a privileged one, a journey into the private lives of many families we meet each week. The original purpose of the hub was to help and support parents of recently diagnosed autistic children, but it soon became apparent the remit of the hub was far greater than this.

At its essence, when setting up the hub, I did not want parents of recently diagnosed children to experience the same sense of loss, worry and helplessness that I experienced when my son, Gavin, was diagnosed just over ten years ago. I am sad to say that ten years later families are still experiencing the same sense of loss upon receiving their child’s diagnosis, and this is not right. Families need to be better supported from the get-go.

We open our doors to meet parents in a private capacity and safe space where we share our own knowledge and experience. Through this engagement with parents, we offer them support and information they need to navigate their own personal journey. We stay with them on this journey until they feel empowered to go it on their own. Each week since the opening of the hub, we have met families in crisis who are battling the unfair system we find ourselves in when it comes to accessing services and supports. These services are seen as a luxury, but they are the difference between our children thriving and barely surviving. This is the reality for many of us.

We see so many families struggling around school places. Either they have none or the one they have is unsuccessful due to the lack of training of teachers and, therefore, there is no understanding of the child’s needs within the school setting. As we know our children having the appropriate school setting is of the highest importance. We need principals, teachers and special needs assistants, SNAs, to have mandatory and continuous training for our children to have a positive school experience and not have parents worried sick for the day when their children are gone and often suffer the backlash when their children are home - for example, around masking. Where parents express difficulty with their school, we suggest Ms Kenny contact the principal to offer free Tusla accredited autism training under autism clubs and education umbrella, ACE, also founded and supported by Ms Kenny for teachers and SNAs.

The Autism Support Hub at its essence provides moral support to the parents who walk through our doors. Sometimes this is a chat, a hug or simply saying "we understand", but we also offer practical support. Week in, week out we support families with the many burdensome forms that exist when trying to access support, be they educational or financial, from home tuition, domiciliary care allowance, DCA, and carer's allowance to mention but a few. Parents come back on many occasions for the continued moral support and, unfortunately, for the support in appealing the many DCA applications refusals. Reform of how these forms are assessed will go a long way in supporting families.

We also offer families the opportunity to attend professional talks through the Parent Led Autism Network, PLAN, again set up voluntarily by Ms Kenny. She has rolled out PLAN in other parts of Dublin where they are a much needed support for families. PLAN offers free talks by professionals on a wide variety of autism topics. These talks are booked out month on month and again have proved an incredible support for parents trying to cope.

In Dublin 15, we have Little Seeds autism arch club, which offers a social outlet to more than 70 autistic children. Only last week Ms Kenny opened Little Seeds autism support therapy services to these 70 families. As we know, such therapies should be offered by the HSE and disability services but are not. She went about not only finding the therapists but setting up the service. The reason for these therapy services existing within this group is due to the hard work of local fundraising.

We also rely heavily on the support of AsIAm, as some situations require more professional support and advocacy which is beyond our expertise and knowledge. We direct these families to the community support team in AsIAm through their autism information line.

We would like to thank members for listening to us today and we hope going forward they agree that what we are doing in Dublin 15 can be mirrored on a national level with the support of the members and Government bodies.

I thank Ms Jones. We will now hear from Ms Margaret Lowndes from Dublin 12 Campaign 4 Autism Inclusion.

Ms Margaret Lowndes

I thank the committee for inviting the Dublin 12 parents autism support group and the D12 Campaign 4 Autism Inclusion to present to the Joint Committee on Autism today. I am a parent of two children with additional needs and the chairperson of the support group and campaign. I acknowledge the input of our vice chairperson, Helen Holmes, who worked with me on today's submission but is unable to attend.

Our organisation was set up in 2018 due to the frustration of parents regarding the lack of education provision, support services and therapies for children in our area. We advocate for equal opportunities in education and improved disability services and to promote acceptance for our children with additional needs in our community and beyond. The work of our campaign over the past four years has resulted in the opening of a brand new autism special school in Crumlin in 2021. Thirty-six children were enrolled initially and that has now increased to 48. In addition, according to the website of the National Council for Special Education, NCSE, the service provision in the Dublin 12 community has increased from seven primary autism classes and one early intervention class in 2018 to 16 primary autism classes and three early intervention classes now. It is also worth noting that, at secondary level, there are currently only six autism classes.

We achieved this by presenting our autism inclusion proposal for Dublin 12 to show there were not enough suitable placements within the community for our children and that children as young as four years of age were continuing to be placed on home tuition or bussed out of the area. Continued pressure and meetings with the Department of Education, the NCSE, Ministers and our Deputies and Senators followed, as well as the arranging of local protests.

While we are happy with the progress to date, there is more work to be done to ensure all schools in the locality have an autism class to ensure inclusivity for all. There are only three primary schools and three secondary schools across Dublin 12 with no autism classes and no immediate plans to open one. We continue to liaise with these schools and the NCSE and Ministers on how they can be assisted.

In addition to this, we advocate for children with additional needs who attend a mainstream setting to receive the extra support and the correct resources needed to assist them and to support teachers in their roles, be it full training in autism or training in other comorbid conditions. The NCSE provides training but places are extremely limited. Teachers need training when in college so they have more time to understand the different abilities of the wonderful children they will meet in their classroom. In January 2021, the first national training programme for special needs assistants, SNAs, was introduced by UCD. This is a positive step forward but the course needs to be accredited as the SNAs need to be able to work and look after our children every day. We look forward to the course being rolled out further.

At present, special schools throughout the country have no therapists. The new special school opened in Dublin 12 was given the school inclusion model, SIM. The SIM is not fit for purpose. It does not allow therapists to work directly with children but instead gives teachers advice on how to handle situations. This model is not suitable for a special school, or any school. Our vision is for all schools in Dublin 12 to have at least one autism class and for children to receive suitable educational placements. We want schools to be able to liaise with each other while building their autism school communities and to have support from the Department of Education and the NCSE to do this.

Our autism support group for parents was also launched four years ago in response to a massive need for families to have a place to go in the area where they could meet other families dealing with similar issues. We pride ourselves on our three core pillars of inclusion, support and advocacy. We provide monthly support groups for parents and a safe space to come and chat or just listen. Our community has grown, and it is great to see parents now connecting with each other. We have been organising activities for children with additional needs for more than 40 families in our community since 2018. We have run family Lego clubs, sports clubs, sensory play activities and trips to jump zones and farms. We have held Christmas parties and arranged socially distanced visits from Santa Claus and the Easter Bunny during the Covid pandemic restrictions. In partnership with Dublin City Council, we were asked to hold an autism awareness morning and a celebration party for World Autism Day in April to promote awareness and acceptance in our community.

A common theme among our families is that their children have very limited opportunity for social interaction, so we reached out to sports and swimming clubs. We liaised with the local library and now we have an amazing cubby that children can use. Many of our local sports clubs offer neurodiverse children an opportunity to take part in football, GAA, boxing and swimming. These sessions are specifically tailored to meet the needs of our children while also providing them with a safe place to enjoy sports like their peers. To promote advocacy for parents, we invite a number of key speakers to talk to us to ensure we understand our own rights and those of our children in areas such as education and disability services. Parents want to be empowered when it comes to their own children, and there is no better advocate for a child in their early years than their own parent.

The roll-out of the progressing disability services model, which has been delayed, is fantastic on paper but in reality it is a different story.

We spoke previously at a joint committee in May 2022 on the main issues, including communication, inconsistencies across the teams, waiting lists, recruitment and grants for families to access therapies. We also met the Minister of State, Deputy Rabbitte, to discuss these issues and, most important, to make recommendations for the improvement of services. Families are waiting too long for interventions for their child, and big social media announcements in advance of any real action give false hope to parents. A child who is referred to the disability teams will not be seen by a member of the team for up to two years. That is two years of families being left in limbo with no support. Families seek out our local support group as they want reassurance, understanding and to be supported. As parents we need a clear pathway to services with the HSE. A letter saying your child will be seen in two years and no other communication during that time is simply not good enough. A key area affecting families right now is the cost of living. Private therapies are in increased demand due to the failure of the HSE. This time last year a 45-minute session with a private occupational therapist cost €100. Now it costs €120.

If the committee takes only one thing away from this meeting, it is that it really listens to the parents and caregivers on the ground supporting their children and young adults. We are the people who can tell the committee the reality of dealing with the health service and accessing education. Too much time is spent discussing the same issues year after year with absolutely no change. While the system fails the people it is trusted to help, local support groups are left to support families through these challenging times. Families support families. Support groups need to be recognised for the voluntary work they do. These are parents who come together and help their communities.

When parents start their journey, it can be very lonely, but in Dublin 12 they now know there is a group to support them and that makes a huge difference. It gives them peace of mind in a space where they can build friendships for themselves and their children. As the saying goes there is strength in community. Alone we can do so little, together we can do so much.

I thank Ms Lowndes and invite Ms. Karen O'Mahony from the Rainbow Club Cork Centre for Autism to make her opening statement.

Ms Karen O'Mahony

I am a mum to four children. Two of my sons, Sean and Stephen, are autistic. I am also a co-founder of the Rainbow Club Cork Centre for Autism. I am grateful for this opportunity to come before the committee today and discuss the many issues we see in our lives and the lives of the 1,028 families who attend our service weekly. For years, families like ours have been treated badly by heavily funded State agencies, left behind without support, put into situations they do not deserve, and our teens, children and young adults discriminated against and neglected in so many ways. This story is not uncommon. I am sure the committee members have all heard these stories, but the reality is this is our life every day. My sons have been let down by the State and the education system that did not cater for their needs, breaking the trust of Sean and Stephen and leaving them with trauma and emotional fallout that was often aggressive and which our family had to endure. The current provision of child and adolescent mental health services needs to be examined, and there are many teens like my son Sean on medication that is not being monitored appropriately.

A black hole we ended up in with no one to get us out led Jon and I to campaign and set up the Rainbow Club so that children and families could receive support in an holistic, caring and loving manner which they deserve and in which will thrive. We provide 21 activities and interventions six days a week. We cater for children from two years old up to adults of 23. We provide a place that can help them to cope daily, build friendships, reduce anxiety around sensory issues, regulate themselves, accept themselves for who they are and what they need, and encourage them on their pathway, being by their side along that journey. We provide sibling support, parent training, counselling and support groups. We advocate in schools for families. We support families with housing difficulties or difficulties with forms and service provision, or who are experiencing hardship and homelessness. Our sports department has many programmes, all of which target the difficulties that stop and exclude children and teens from participating in mainstream sports daily by building a model that will allow them to learn, with no expectation or stress in an activity that is supposed to enhance positive mental health and well-being. Computer and games programmes is the future for many, and is the skill the children need to know about and learn. The groups are all set up for every child so he or she can be part of a group enjoying activities, growing in confidence and equipping them with what that child needs for his or her adult life.

We are proud of what we have built. Shame on this State for not supporting us with the funding we so desperately need to expand and provide more services to families in Cork city and county. Families are so desperate that they travel to us from Limerick, Kilkenny, Waterford and now Killarney, all because there is nothing there for them. We will replicate. We will get our forever home because I will not stop until Rainbow Club is national so no one is left behind. I will never give up fighting until this country sees the child and family at the centre. Rainbow Club is a universal model for autism which is now seven years old, thriving in a little corner in Mahon, Cork, and filled with laughter, healing and progress every day. It is a community model that has the family at the heart of it with a strategy that is actually achieving its goals. Our organisation, including our café, offers an inclusive environment for all and provides jobs for local people and autistic adults. Our café is a training café that welcomes students from the National Learning Network, NLN, L'Arche, Aspect, schools and colleges. It is where Seán, the Autistic Baker, found his love for baking. It is a haven for all, buzzing with chatter and modelling acceptance every day.

Rainbow Club is a beacon of hope. It shows the way services should be provided, the impact this model has on families' quality of life and the impact of the wrap-around support to the autistic person to thrive and live a fulfilling, positive life, allowing him or her to participate and give back. Autistic people have the right to be included, accepted and supported in their life but this is not the case. They are made to feel more excluded and rejected every day in the society we have created, and that needs to change.

The committee has the opportunity to listen to all sides. Autistic persons, advocacy groups, community groups and parents should all be part of the discussions and debates for this new policy, ensuring every voice is heard. “People first” should always be our goal. Trying to put supports in place is not acceptable anymore; action is now needed.

Alternative education is another programme we want to provide in education, with a sensory diet for the child and teen who cannot cope, and if the correct supports are in place, it can provide a wrap-around for the individual and a transition back to school, all catering for the needs of the person in a caring nature. Summer provision is also a must. Without appropriate respite, these families need support and consistency throughout the year. We also supply that, again without State funding. Too many schools refuse to do it or to carry it out effectively. Too many children go without help, routine or structure during the summer months and the fallout for them and their families is a high price to pay.

I ask the committee members for three things, namely, a plan and policy that will provide what autistic people and their families need, support for the Rainbow Club model and the impact it has and can have for families in Ireland if replicated, and a thought for children such as my sons, Sean and Stephen, when they make decisions, implement change and continue their oversight of the policy that will impact on their future. The committee can make the world a better place for them if it hears their voices today.

I thank members for listening to the voices I represent in the Rainbow Club.

I thank Ms O'Mahony and invite Ms Jennings to make her opening statement.

Ms Miriam Jennings

I thank the Chairman and the committee members for the opportunity to address them. We are a parents' group whose children attend special schools and classes countrywide. The vast majority of our children have complex needs and life-altering disabilities. Their needs are severe, multiple and present from the cradle to the grave.

The July provision school programme came about following a High Court judgment in 1993 that recognised that children with severe needs lose skills over the long school holidays that may never be recovered. It was replaced by the expanded summer programme in 2020, which saw an increase in eligibility from 15,000 children in 2019 to 80,000 children in 2021. We believe, however, that our children's need for a school-based summer programme was not safeguarded. No plan was put in place to ensure that complex-needs children, for whom the scheme was set up, would access it. Department of Education figures from 2021 show that 80% of children in special schools had no access to the programme, while less than 5% of the 8,000 children in special schools got the full recommended four weeks.

The home-based programme promoted by the Department is not an appropriate alternative. The National Council for Special Education has stated this is the least effective way to deliver the programme, given many children with autism and intellectual disabilities cannot cope and will not tolerate strangers in their home environment. A home-based programme cannot be mooted as an alternative to the school-based programme to facilitate children for whom it is not suitable.

The school day provides more to our children than a curriculum. It provides routine, stability and an opportunity to be a part of a world outside of their home. Our children have access to school facilities such as sensory and occupational therapy rooms and secure play areas. The impact of the long school break during the summer is significant and frightening. Our children's essential routine stops abruptly and they cannot understand why. They cannot communicate their multiple worries and uncertainties given so many are non-verbal. They regress rapidly.

We have submitted real-life stories from ten our families, as the committee will have seen. The pressure on the child, parents, siblings and extended family is immense. There are no summer camps, playdates or family holidays during the nine or 13 weeks away from school. The long break causes an increase in the number of episodes of sensory overload, a regression in skills and a greater incidence of anxiety, self-injurious behaviours, aggression towards parents and siblings, destructive outbursts and absconding. When a child is regressing and losing the ability to cope, this puts a strain on families trying to support him or her. Family relationships come under immense pressure. Siblings end up assisting with care and are left with no summer holidays themselves while parents try to hold the family unit together under incredible levels of stress and in a constant state of hyper-vigilance.

We ask, for the sake of our children and their families, that the committee fight for complex-needs children to be fully included in the school-based summer programme. We ask that a tiered approach to the provision of the programme be established based on absolute need. We voiced our concerns to our schools, local representatives and the Department of Education, along with the Minister for Education and the Minister of State, Deputy Madigan, earlier this year, yet we still watched from a lonely distance as families prepared for a summer break, anxiously wondering what would happen to our children over the summer. Many families learned only in June that their school would not provide the programme, while many parents scrambled to ask their employer for unpaid leave, just to cope.

We have been proactive in our advocacy for our children and have worked hard to propose solutions. We have contacted the departments of education in all 36 jurisdictions in Europe. We have identified, as has the Minister of State, Deputy Rabbitte, a highly effective special school summer model in Malta. The Maltese utilise a combination of school staff and external multidisciplinary professionals, students and trainees, such as nurses, doctors, speech therapists and respite workers, to work with the children over eight weeks of their school holidays. A fresh approach benefits not only the children but also the professionals, who gain valuable experience.

The Minister of State, Deputy Madigan, has received information from interviews with three Irish special school principals running very successful school-based programmes. These principals often employ external professional staff and trainees and they start planning in January. We need the Minister of State and the Department of Education to design a fresh approach and to commence work on it urgently. We need collaboration between Departments to ensure our complex-needs children will get access to our next summer programme. They cannot afford to lose another year.

I thank Ms Jennings.

Ms O'Mahony referred to medication and CAMHS. I want to understand the practicality of that because sometimes we hear phrases such as that but it is only when we are told the full story that we really understand the impact of what is happening to people and their families. As I understand it, without asking her to divulge too much personal information, Ms O'Mahony's son takes a form of medication that many people take. May I ask what age he is?

Ms Karen O'Mahony

He is 16.

Sensitivity to medication can be very important, and young people change, as do their minds, their size, their weight and everything else. It was of great concern to me that Ms O'Mahony said that this medication is not being supervised. My son takes significant medication and that is supervised. Will she please explain why it is not being supervised? How often should he be seen in regard to his medication? When has that happened and not happened? Will she please explain in detail what is not happening?

Ms Karen O'Mahony

Mine is one of many families in Cork whom this has happened to. Sean was put on medication at the age of six. He was monitored every three months for his weight, blood pressure and height, which is part of being overseen by CAMHS. GPs cannot do that because, obviously, they are not registered psychiatric professionals. It is now more than five years since Sean has seen any doctor. He is now 6 ft 2 in. and very big.

He is on the same level of medication and our doctor cannot interfere with that.

I cannot get my head around this. Ms O'Mahony's six-year-old child was put on psychiatric-based medication and is seen every three months in respect of blood pressure. Did she also say blood salts?

Ms Karen O'Mahony

No, the bloods would have been done in the hospital.

It is bloods generally - blood pressure and-----

Ms Karen O'Mahony

Their heights and weights.

The heights and weights.

Ms Karen O'Mahony

There is general feedback on how they are doing and if it needed to be increased or decreased.

For how long was he seen every three months?

Ms Karen O'Mahony

It would have been for the first four or five years.

That got him to about ten or 11.

Ms Karen O'Mahony

It was very consistent. It was amazing and great. He knew and was familiar with the doctor. Then that doctor left and another doctor came on. She saw him once. We made several phone calls and other inquiries. We were told that we had been signed off.

Ms Karen O'Mahony

I asked, "How can you sign off a child who is under your care with medication?" However, it is not even entertained.

What does it even mean to be "signed off"? He is an 11-year-old boy.

Ms Karen O'Mahony

They signed us off.

They signed off an 11-year-old boy and he continues to take medication with him being signed off.

Ms Karen O'Mahony

Yes. He really could not have a quality of life without it.

Medication is essential.

Ms Karen O'Mahony

That is what has helped Seán.

Fine; we accept that. However, what about the supervision and management? He was "signed off" at 11 and he is now 16. He has gone through puberty in that period and presumably a significant growth spurt if he is 6 ft 2 in. He would have had significant emotional and personal development in that time and yet nobody has seen him.

Ms Karen O'Mahony

No.

I am sorry. I do not know what to say other than to apologise to Ms O'Mahony.

Ms Karen O'Mahony

This is not an isolated case.

Ms Karen O'Mahony

I spoke to a mother yesterday and her son has quite complex needs. It has been two years and she has the same battle with no replies to emails and phone calls. That is the reality of what our family goes through.

Does anyone else have that experience?

Ms Margaret Lowndes

We are in the middle of dealing with CAMHS at the moment. My son will be nine next month. He had the first part of an ADHD assessment in May and we have had no contact so far. I have rung every week but have been put on the long finger. He is now starting to show signs of decreasing mental health. My worry is that we are not being seen and nobody is answering the phone. We do not know whether he has ADHD or not. There is no support at all. No GP can do anything either.

I outlined a case in my constituency where not only was it not being positively proactively managed, but it was forgotten entirely. Do any of the witnesses here believe their child's case is being proactively managed either by the HSE or CAMHS?

Ms Caroline Poole

We make phone calls constantly requiring help. My daughter was only recently taken into CAMHS. She was diagnosed in May with anorexia and social anxiety, and I have not seen anybody since. I rang and she was given an appointment. When I arrived, the appointment was cancelled. They said they had tried to ring me, but I had no missed phone call. I rang again and said that she was in crisis and was refusing school. I also have a son in CAMHS and so they gave me an appointment for the two of them. They put her on medication and just gave me a three-month script for his medication.

It was just a script for three months. Was there any follow-up?

Ms Caroline Poole

No.

Was there any supervision?

Ms Caroline Poole

No. I ring the social worker because he can be quite aggressive. When I tell them he is in crisis, I am advised to try this and try that, but there is no doctor or psychiatrist there. The psychiatrist who reviewed my daughter at the initial appointment is now out sick. The speech and language therapist is gone. It is hard to build a relationship with my daughter who struggles to talk. She has met somebody new and so she has to talk all over again. They tell her to try to eat. She cannot eat; she is unable. She does not know what is wrong with her. We now have a review appointment for her on the 13th. I will ring them in December when my son's script is finished so that it can be redone for another three months.

The reason I ask is that is the most basic level of supervision that a child can be put under. Without wishing to be in any way crude, it is mind-altering medication of necessity. It is inappropriate to put a child on mind-altering medication without even supervising them every three months. In Ms Poole's case it is five years.

Ms Caroline Poole

It is strong medication.

Ms Caroline Poole

His medication has been upped. They did not weigh him and did not do anything.

How did they put it up without weighing him or-----

Ms Caroline Poole

He is on some in the morning and we are having episodes in the afternoon after school. When I went up, he saw a new psychiatrist who had not seen him. They just gave 10 mg. They did not give me a time; I am just giving it to him at 5 o'clock.

They did not give Ms Poole a time.

Ms Caroline Poole

They did not give me a time. He has one in the morning and then when he comes in from school. I know it only lasts three hours so rather than disrupting his sleep my husband and I agreed we would give it to him at 5 o'clock so that at least by 8 o'clock or 9 o'clock there is the hope that he will sleep

I could discuss this all day, but I am out of time.

I thank all the witnesses for coming in this morning and sharing their stories. I commend them on all the work they are doing to support their autistic children and autistic adults in their community. I have a question on financial supports which some witnesses mentioned. Does this all come through fundraising or do they get any Government support whatsoever? Are any grants available? I know they indicated that the HSE has not been forthcoming.

Some of the witnesses also mentioned that they had managed to engage therapists to offer interventions. We have heard from the HSE that it cannot find them in the community. How come they seem to be available? Is it just that they are not willing to work for the HSE because of various conditions? What is the witnesses' understanding of it?

I congratulate Ms Lowndes on the number of schools which have been opened in her locality and the pressure she applied to bring that about. When a special school or an autism class is opened are the staff who are put in adequately trained? We frequently say that we need more autism classes and need them in every school and in every community so that children do not have to travel miles to get to a suitable school. While that is correct, they are often opened without the proper planning and the proper resources being put in. Is that a major issue?

Because of the lack of assessment of children, they do not get the school place they deserve to get. As it could be years before they are properly assessed, does that delay mean they are not being put in the proper placement which does damage to them?

A number of witnesses spoke about proposals on the summer provision. I could not agree more. This is something that needs to be planned now for next year. We need to start the planning process now and put it in place from January onwards.

I thank Ms Jennings for the examples she provided from principals and people working in various services. They give an insight into what is required. Many schools are not given approval until May which is far too late. They may be using it as an excuse not to proceed with the summer provision. However, it is a problem that they are not told what funding is available until May or June which is too late. This process needs to start much earlier. It needs to ensure that the children with more complex needs are catered for first and not left on their own at home maybe with unsuitable home-based tuition if they are lucky enough to get a tutor.

There was one specific question for Ms Lowndes. She might take that first and then we might deal with funding for special schools.

Ms Margaret Lowndes

We recognised the need for a special school in the area. It is not just about getting that building open; it is everything else that goes with it. When we campaigned, we wanted trained teachers, SNAs and therapists on site. We asked for that. Teachers are not given sufficient training. Teacher training is the bare minimum when it comes to children with special educational needs. When they go looking for NCSE courses, there are very limited places. We recently discovered that when the first autism class is opened, the school gets some NCSE training programmes. However, there is no training for the second, third and fourth. The trained teacher has to train the other staff which makes no sense to us. Training should be mandatory. About two years ago the North of Ireland was looking to introduce mandatory training for teachers. I am not 100% sure if it has gone through; I do not think it has. Mandatory training should be brought in down here. It is up to teachers as to which side they go, but they need to learn the whole aspect of education.

It is the same with the NCSE which does not seem to think this is urgent. It is a case of open an autism class, give the go-ahead and the teacher is trained two days before they go in or in some cases there is no training until the children are in there.

We have an autism class at the moment that was due to open on 31 August and did not open. It will not open until the first week of October. There are actually children sitting at home, and that teacher is currently training. If she was just trained up and there was continuing professional development, CPD, we feel that would be a better way around it. Teacher training needs to be mandatory. The Irish National Teachers' Organisation, INTO, and the teacher training colleges need to sit down and discuss having a proper programme in place.

Does anyone want to come in on funding?

Ms Karen O'Mahony

I would, yes. We were lucky that we secured a small amount of funding last year from the HSE for one part of what is a very big entity at Rainbow Club. We have been six years trying to secure even that. We are continuing to fundraise and do everything we can to keep our doors open, but we are not fitting into boxes. The Rainbow Club is such a unique model, we come under different Departments. We have loads of different elements. We have summer provision that we roll out ourselves in Rainbow Club and we are looking at an alternative education piece there. We are constantly told that we do not fit into funding streams, so that is what we need to be able to fall on. There needs to be more collaboration around the funding pools. We have done what we have in seven years on our own. We have not had help. If we had funding, we could do so much more.

Ms Ger Kenny

I would like to comment on Autism Clubs and Education, ACE, and what Ms Lowndes said about the compulsory training for teachers and SNAs. This year, in Dublin 15, there were, I think, 15 children who had come through primary school and there was no secondary school place for them, so some of the schools in Dublin 15 were asked to open an autism class.

Two years ago, I set up ACE, which is Autism Clubs and Education, so I receive funding from Tusla. I source speakers to provide free training workshops to teachers, SNAs and professionals. I will be starting a workshop in October and I will be notifying the schools. We also have a Facebook page. That workshop will go back to the beginning on topics such as what is autism; understanding autism; setting up an autism class; and dealing with anxiety. I would love for it to be compulsory for schools. I do not think that they should have a choice in whether they take the training or not. It should be compulsory, whether they come to ACE and do it through me or they do it through the Middletown Centre for Autism or other organisations that offer workshops. No teacher or SNA should be in a class teaching a child with autism who has never had that experience before.

On another matter, I also have the Parent-Led Autism Network, PLAN, which provides free parent information talks. It is funded by Tusla. They have been going on for the past four years. There are free training workshops to help parents who are struggling with their children. We have both Zoom and in-person information talks. All topics are autism-related. It went nationwide, particularly during Covid-19. A lot more families, with the pressure of homeschooling their child, were reaching out and looking for help.

PLAN has been replicated in Dublin 5, 13 and 17 for the past two years. They have a big launch night coming up in October. PLAN in Balbriggan is very successful as well. For me, the dream would be to have PLAN rolled out nationwide. I would love to see every county in Ireland having one - PLAN Galway, PLAN Limerick, PLAN Kilkenny, and so on. Even if they had the budget for one speaker per month and a Zoom licence, they could reach out to so many more families while they are on waiting lists. Tusla recognises that this is a bit of a stopgap. This is help that people can get through Zoom for some of the talks or meet with other parents and have contact with them. That is a little of what I have been able to set up myself in the last few years and it has been a big success.

Thank you very much. I think Ms Jenkins wanted to come in on the special summer provision.

Ms Elaine Jenkins

I want to go back to Deputy Tully's point on staff training. We are really in the middle of a perfect storm at the moment, because we have a combination of no staff training and no therapists. When my son was diagnosed eight years ago, we had some access to speech and occupational therapy. There was a plan at that stage. When he started school, the teachers had somebody to refer to around his sensory needs. He had a sensory programme. Now, there is nobody in our Children's Disability Network teams, CDNTs, to see those children. They do not know them in school, they do not know them starting school, they do not know them as they grow up, and the teachers are not trained to understand the absolute depths of the behaviour, of how to teach these children to communicate or how to manage their sensory needs. It is not really about education or health. The two matters are absolutely knotted together, for life, but we are in a very bad place at the moment when the teachers do not understand the behaviours that are arriving into these many autism classes.

Ms Sarah Murphy

I would like to say about the autism classes that it tends to be the last teacher into the school that gets the autism class. That is my experience. It is very hard to teach in an autism class if you have no training. It is very stressful on the teacher. The schools are kind of making it up as they go along. I am sure not all schools are, but that is my experience. It is the most inexperienced teacher or the teacher just out of college who gets the autism class.

Thank you. I call Deputy Pádraig O'Sullivan.

I thank everybody for coming. I have met a number of the witnesses in the flesh over the past few years and a few on Zoom as well. It is nice to put the face to the name. We only have five minutes, which is very short. I would prefer to hear from the witnesses. I have two specific questions and then perhaps I could come in at the end again. One relates special school classes. The summer provision programme does not work. It is great for me as a Government TD to be able to say to people "you have more funding than ever before" but, on the ground, obviously, that is not translating. People are not taking up the scheme for one reason or another. There are difficulties there. I think Mrs. Jennings hit the nail on the head that the people that that course was originally designed for are not benefiting from it. They need the most help and attention, specifically during those months where there is no school. I would like to ask the witnesses about the staffing of that course. I sat in a staff room for 15 years professionally and I cannot recall, and I may be wrong, a principal or teacher coming in saying "anybody up for doing summer provision this year?" I genuinely cannot. Is it a case that we need to look at a regional model where schools would band together or is it a case that we are going to compel schools to do it? If we continue to use a discretionary element and allow schools to make the decision, we might end up on the same road we did with the ASD classes, which is part of the mess we are in today. I would be interested if the witnesses could give me a two-minute answer on that.

Ms. O'Mahony is up from Cork, like me, so I may have to go to her for my other two minutes. I know the work Ms O'Mahony does, I know the confines of the space that she is in. It is not practical. She is making the best of what she can, but when I hear that there are 1,028 families coming through her doors every week, bearing in mind the setting she is in, I ask myself how they manage it. Could she give us a picture of how she manages it day to day and what a new site would do for her?

Thank you Deputy O'Sullivan. You have directed one question to Ms O'Mahony and one to Mrs. Jennings.

Ms Elaine Jenkins

What we are proposing is to step somewhat outside of education, particularly for the children with more complex needs. As Mrs. Jennings mentioned earlier regarding the Department of Education freedom of information figures for 2021, only 410 children in special schools had the school-based programme. A bigger figure is that 80% of them had none.

We spoke to the parents in our group earlier this year and as of June the attendance numbers look to be down somewhat, even on 2021. We can sit here and complain or we can do something about it. What we do as a group is to try to find solutions that we can bring forward. As Ms Jennings mentioned, one angle we took was to find out what the other jurisdictions in Europe are doing. We contacted each of them and many replied. The one we had most interaction with was the Maltese department of education. We met them three times. They were extremely helpful. They talked us through what they do in summer. They have a similar system to us in that they have special schools. They are now copying our model for special classes and rolling that out but they also have a lot of autistic children in mainstream education. They offer a programme which is available to every child, every year, for the full summer break. They offer the work initially to educators early in the year who decide whether they will do it. If not, then it is offered to others, for example, speech therapists, OTs, doctors, nurses, trainee police etc. We believe everybody who will be working with our children as adults should know them as children and they benefit as much from that as our children do.

The Maltese programme is an eight week long summer programme. They cover the curriculum in their winter school. Summer is basically camp-based in school with school transport. Some of the school staff participate but not all. The difference between our programme and theirs is that theirs is equitable. Every child gets the opportunity to attend. In our case, some schools offer a severe to profound class, but not an autism class. Sometimes 10% of a school can attend and there is a lottery. The Maltese programme is reliable. It is run for eight weeks every year so parents can plan the summer. They do not have to take unpaid leave. Siblings can have a life during the summer. Finally, it is flexible. Not every child will be able to attend for the full summer so parents can choose which weeks the child attends.

We are asking for a Maltese-type programme to be introduced from 2023 onwards and, as Ms Jennings said, we need a tiered approach. That is what we are hoping for.

Can I clarify that no schools have a choice in this? Is it applied in every school?

Ms Elaine Jenkins

Yes it is in Malta, but-----

Ms Miriam Jennings

Not here

Ms Elaine Jenkins

-----it is probably above our paygrade.

That is fine thanks.

Ms Sarah Murphy

That is the problem. It is State funded. A sum of €40 million was allocated to the summer provision programme last year but only 410 children received the full four weeks of school provision out of €40 million, which is what is required for children who have complex needs. Complex needs can mean autism, intellectual disability, including a moderate intellectual disability with medical needs, for example epilepsy or other comorbid mental health issues. It also includes other syndromes like Down's syndrome, which my son has. He has a combination of all of those. Autism and disability are wide spectrums and the children who have missed the summer programme are those complex needs children. The summer programme was set up for these children. Only 410 children were provided with the full four weeks which was recommended by that High Court judgment nearly 20 years ago now. Here we are. Loads of money is being thrown at it; t is a State funded system but it is not State controlled. Every school can decide and they use the excuse that they did not find out until May or June. The Department does need to get the guidelines out a bit quicker every year, but the programme has been in place for nearly 20 years. It is not a surprise and the special schools in particular do not offer the programme. Some 80% of children in special schools had no access to the programme in 2021.

I call Ms O'Mahony to answer Deputy O'Sullivan as well.

Ms Karen O'Mahony

When we started seven years ago we had 22 children and one room. Today we are share a community centre with 32 other groups. The community centre has been amazing. It has given us the car park. We have eight modular buildings that cater for social groups, computer training, siblings activities, therapies, etc. We have also brought a sports hall on site and established a horticulture site. We take up about 18,000 sq. ft. We have used every little piece of space we have, but this is not the ideal dream for Rainbow Club obviously. Many of our members come from right across the spectrum and they have many complex needs so keeping them in a safe environment is really important for us. We have identified a site in the local area that is owned by the HSE. We had looked at it six years ago as well. It is a perfect site for us as it would cater for all of our current needs and allow us to expand. There is a lot of conversation about what we do. We delivered the summer provision programme this year but we did not receive any funding for it. Many of the children who attended were children with complex needs. We catered for that.

It is not that hard to implement a service when you have the right people who know how to do it. We have worked hard on the extra parts of the club, the new cookery school, the new horticulture site for young adults and we have also been working on an autism course over the past five years. Rainbow Club is providing lots of different pieces and on one site it can have that lovely unique model under one umbrella. I have looked at the Maltese model as well. It is amazing. The model that we are looking at needs to be holistic, child-centred and family based. It must wrap around the whole family. Departments need to collaborate and that is the one message that comes out of Rainbow Club all the time. We are doing a bit of everything but we are making it work. It is working and it is helping. We have huge impact, and a lot of positive outcomes. We work 50 weeks of the year. We only close for Christmas. This is manageable if people have vision. We just need to get people to buy into that to see how it can happen with the right people. We have our eye on the health centre in Mahon and we really need to secure that in the long term.

I think it quite ironic that Rainbow Club provided the summer provision without any funding.

Ms Karen O'Mahony

We had no funding.

Thank you Ms O'Mahony. Thank you Deputy O'Sullivan. I call Deputy Marian Harkin.

I apologise that I was a little late arriving. Last night I sat down and read your submissions for the best part of two hours. In all honesty I could hardly bear to read them and then I thought, what am I talking about? These are the lives the witnesses lead. The submissions were very powerful, especially where the different parents of children A-L spoke about the impact on their families. There was one phrase that somebody used which I think will stay with me forever. They said that they were literally living in the shadows of society, that they do not belong anywhere.

It is clear that the members of the committee are very concerned. Some people have lived experience of this. I do not personally. I have family members who do, but I do not. The submissions made me aware of the huge responsibility that we have in this committee, that in 12 or nine months time when we have finished our work that we make progress. One of the good things about all of the documentation that we received from the witnesses is that it included some solutions and some ideas. It referenced the model in Malta and what I really liked about that model was how flexible it is and I would like to hear the views of the witnesses. In the past, in Malta, if they could not get enough people to run the programme they increased salaries to make it worth people's while. As Ms Jenkins said, they include everybody from students, to graduates, to police trainees. They mixed school and non-school, medical and various different sectors to make sure that they could run the programme. We have had teachers' unions in here. We have spoken to others who are all part of this system, including the Minister. We need to try to find a system that works and the Maltese one seems to have a lot of positive aspects. I think the question was asked a few moments ago whether the witnesses believe it should be mandatory and I think Ms Jenkins said that the answer to that is above her paygrade.

I think what the Maltese model allows for is a model where we do not have to say to schools that every single one of them must do it next year, but where we can say we have a model here that will reward those who want to do it. Literally, every day that goes by, when something is not happening to put things in place for next year, is a day lost. I would like the witnesses view on that because there are a lot of pieces to this jigsaw. What do we need to do now so that we are not running after our tails next March, April and May? I thank the witnesses again. They certainly gave me a great deal of food for thought.

Who wants to take the first question? I call Ms Jennings.

Ms Miriam Jennings

I thank the Deputy for her kind words. The first thing I would say is that I think everybody here is a very reluctant advocate. We certainly would not choose to be here but we come here because this is our lived experience. To answer Deputy Harkin's question, we want to come with solutions. It is very important to us to be part of the solution and to bring what we know to those who have the power to do something.

We looked at the couple of schools providing a more or less full summer in-school programme, and the committee has received the information. We contacted three special school principals who sat with us and went through a full case study. They were fantastic. The first thing I will say about those principals is that each and every one of them said the reason they do it every single year is that they could not imagine these families being without this for nine weeks, not to mention that some of our children in the secondary school system go without this for 13 weeks. They said they could not not do it. They work all year round to identify and line up people to work in the programme. They are seeing a pattern where it is getting harder every year to obtain staff and retain their own staff. One principal said that perhaps the expansion of the programme and allowing their current teachers to work in the community on the home model, with children with less challenging needs has maybe resulted in the loss of a couple of staff from their in-school programme. They work all year to plan it and they ask their own staff in January who is available. They work from there and they rely very heavily on keeping intensive local lists and students who have been in on placement. They have a very good relationship with universities from which they place students. Special schools would have students coming from all the disciplines within the multidisciplinary team for experience.

This year we took one of those schools as a case study. It had lost a significant number of staff who had normally done the programme and who were not available this year. We took a look at who it had available and at the multidisciplinary students who were available there. We also interviewed three of those students as part of the case study. The bottom line was that it really was a win-win. Those students could not talk enough about their whole experience and what they had learned. It was what they went to college for and it was the icing on the cake. The experience over three to four weeks in the special school was something a couple of them had never been exposed to. They all said it was extremely daunting to start with but they got magnificent support. It just brought out so many positives for them in terms of capitalising on all they had learned in college and of a commitment to continue to be available and to work with the school going forward.

This is what our schools need. Our school principals tell us they need these local lists and these people to call on, so that certainly was a win-win. I refer to the practicalities of it and of how these schools are delivering a very detailed programme. Let us not forget that to deliver a special school programme for children with very complex needs and where you are talking about a 1:1 ratio nearly all of the time, you are talking about a huge responsibility for the principal and the child, but also for the student or that person who is coming in that is supporting. Each of the schools needed a significant hand-over time. That was done by one of the schools in June and it paid for it from its own board of management fund in order to have those students in from five to ten weeks on placement and for a hand-over for the specific child they would be working with. They made it work.

What we identified were the lengths these principals were willing to go to in order to ensure those families had the remaining support in the summer. A principal told me that each week they can gain from the summer programme, hopefully, means slightly less regression in September. The principal said that regression is inevitable as the school holidays are simply too long, but they are trying to work on lessening that regression.

The school on which we did the case study was quite unique. It had a good working relationship with its overnight service, that is, the respite services for the few children availing of that service. In that case, because it had the problems with employing staff this year, each child in the school had a four-day week. However, it immediately identified the children who would be with the overnight service within these weeks in July. It worked with it so that the night the children were with the overnight service could be the fifth day they were not at school and that it would have them the other four days. It was an example of cross-department or cross-service partnership working really well for the benefit of the child. The child was the focus.

These principals know exactly what our families are living with. They really identify the absolute strain and difficulties our families face for nine weeks. The Deputy will have read the stories and they are not easy reading but I can guarantee they are the reality and all of our families are always available to speak. In terms of the reality of raising a child with very complex needs, in many of our families, a lone carer cannot do that and a second parent has to take unpaid leave. Two parents have to be at home for that period of time. In many case their siblings, their younger brothers and sisters, take over some of those care needs. It is wholly inappropriate for a child to be a carer when that child is under the age of ten. That is what is happening in the summer with our complex needs children. We find siblings want to leave home a lot sooner as they cannot cope with living with their brother or sister.

Ms Miriam Jennings

It is very difficult to be a mother and feel you have failed your other children while you were trying to be everything to one child. It is very, very difficult.

I refer to unpaid leave and the extended families trying to cover. Seventy to 80-year-old men and women coming in to cover care needs is not appropriate. They did not work and pay taxes all their lives to do that. You are talking about the sibling relationships that are decimated in many cases. Many of these children, because they do not get the care in the summer they absolutely require for survival, are fast-tracked into our residential care system. As we said in our opening statement, while the care of these children is cradle to grave - let us face that reality - many of our families do not want to be talking about or having discussions on residential care due to just a lack in summer provision.

Thank you very much.

My time is up Chair.

Thank you, Deputy Harkin. The next member on my list is Senator Flynn.

Thank you, Chair. I sometimes go back to the saying that nobody knows the shoe is cutting a person except the person who is wearing it. That is the reason this committee was set up, that is, to listen to the voices. However, I am sick of listening, and that is the God's honest truth. I am sick of listening to the issues across other committees without any action. I hope this committee will implement some of the actions each and every witness brought up here today. It is a prime example of the saying that if you want the job done, you have to do it yourself. I refer to many of these organisations, parents groups and hubs were set up. I know that in Ardara, County Donegal, parents, and more so women, are coming together and setting up support groups for each other. AsIAm, the national organisation, provides training and we, as a committee, have had that training.

AsIAm provides very appropriate training and that should be implemented in every school. We must provide children with whatever supports they need. Not every child requires a place in a special school and may only need a special class.

I do not mean to be controversial but there are a hell of a lot of Ministers. We have the Minister for Education; the Minister of State at the Department of Education, Deputy Madigan, who has responsibility for special education and inclusion; and the Minister for Children, Equality, Disability, Integration and Youth. With so many people the can is kicked down the road. I have seen that myself as an activist and as a person who works closely with organisations such as AsIAm and Independent Living Movement Ireland plus there are autistic adults too. Do the organisations represented here find that when they raise issues with Ministers that have been told that the issues are not within the remit of that Department?

I am a member of the Oireachtas Joint Committee on Education, Further and Higher Education, Research, Innovation and Science. It is a very effective committee as there is cross-party support for issues. I also work closely with some of the Departments, unions and the Department of Education on issues which cry out for mental health supports to be provided in all of the schools. These supports must be implemented as well. Parents, young people and organisations provide solutions and answers but there is a lack of political will. This committee enjoys cross-party support for the provision of better services. We are not looking for autistic children and adults to receive special treatment just to receive their basic human rights and supports. There are no supports in place for parents or families so they and the organisations must find that draining and feel like they are banging their heads off a brick wall when they seek answers. This committee has only recently been established and it is good to bring people in here such as the mothers of autistic children and the people affected but we need implementation. We know the situation with the summer programme, having listened to parents, so now there must be implementation because otherwise we could be here this time next year talking about what we need. We know the answers and this is really about implementation. In terms of dealing with different Departments though, not Ministers as such, have the delegations experienced the same as what I think others have experienced?

Ms Karen O'Mahony

A few years ago I sent an email describing what my organisation does to the then Minister who had responsibility for disability services. I received a return email that stated that my organisation and its work did not come within the remit of the Department, which is strange when our children are autistic and have a disability. The response has stuck in my head and I still have the email.

We have engaged with so many Senators and local Deputies, and have had huge support from the Minister of State, Deputy Rabbitte, and the Minister for Public Expenditure and Reform, Deputy McGrath, who constantly tries to support. There is a lot of goodwill but nothing has happened. Recently the Minister of State, Deputy Josepha Madigan, visited us and acknowledged our work. We constantly repeat our message that an entire pathway needs to exist for each child and everything needs to work together to provide enough support for the entire journey, which applies not just to school but to services as well. There must be a very clear pathway for each child and his or her future.

One constantly worries about the next step. For example, while these children attend national school one wonders whether placements will be found in secondary schools, and also what will happen after respite. There are families who have children in primary services that are planning as far as three years ahead for the onset of adult services. I know of a family who, a fortnight ago, had found a respite place for their young adult but the transport service was cancelled at the 11th hour. The mother in that family had lost her husband previously and she worked on the pathway for two and half years only for transport to be dropped at the last minute. There is a breakdown in communications which makes it seem like there are steel walls between Departments. I urge people to start talking together and allow for Department officials to work with families and organisations. I also want Departments to be receptive to our clearly telling them what works and does not work, and to be receptive to our clearly identifying what services must be put in place. Our experience is that there is a lot of goodwill but nothing has happened to provide long-term plans and an ability to implement stuff.

The summer provision has been a big issue this year. I have tried to engage on getting home tuition and summer provision for the past four years but have encountered one barrier after another. On inquiring one is bounced from one person to another and nobody can give a final answer as to what we need to do. We face that reality every day after we have gotten up in the morning perhaps without having slept that night and still having to do a whole day. We are not here because we want to be but because we need to be. We are here because we are all trying to fight for families who may not have a voice as strong as ours. We are also probably further along this journey than some of the newer families. They are only starting their journey and they are lucky to have people like us around them because when I started my journey there was nobody available. If what I have learned and experienced over the years can help somebody else then that is what I will do but we should not have to sit here with us all pleading and begging for help to be provided for our children when that is a simple human right. They are entitled to such just like everyone else.

Ms Miriam Jennings

I shall respond to the point made about responsibility for issues being passed between Departments and Ministers. A number of our special schools are a dual model so a health and education model. Many of our families would say that many of the needs of their children with complex needs concern more of a health model. Some children follow a curriculum in special schools but many of the children for whom we advocate do not.

We definitely have some dual conversations with the Minister of State with responsibility for special education and, concerning disability, with the Minister for Children, Equality, Disability, Integration and Youth. We keep them constantly up to date with our research and the models that we propose. In addition we have had numerous meetings with them where we told them everything, which we have identified this morning, about the absolute need for survival and support in the summer.

Interestingly, based on further research we conducted this year, we envisage another issue for the Minister for Further and Higher Education, Research, Innovation and Science. We have all of the information now so we know how valuable placements are for our students in third level colleges. One student has told me that they only got to go to a special school, do a placement and get experience because they knew the lady who worked there who, in turn, said a placement could be organised but none of that person's classmates got the same opportunities. It is crazy that we are not seeing these advantages and opportunities. On this specific issue there is a three-pronged ministerial approach and Ministers should talk to each other. Yes, there certainly are areas where we have found a 50:50 split within ministerial communications.

Ms Margaret Lowndes

The same applies to everything and not just autism classes or special schools but mainstream schools. There are a lot of autistic children who are in mainstream education but they do not get any support whatsoever and that is really bad. We advocate for all autistic children but currently the parents we know of autistic children in mainstream education have huge issues because they do not get anything. There are not enough National Educational Psychological Service assistants and therapists. Also, teachers are not trained enough. Therefore, children suffer because they are left in the mainstream system. We have asked for therapists to be brought into the mainstream system, first in special schools but the provision needs to be across the board. The children in mainstream education who may have an exemption from studying Irish could, for example, receive assistance from therapists at that time whether speech and language therapists or occupational therapists. This what we must do in future.

We have heard stories about children going to school and see the coke bottle effect. They get in the school door and they are masking all day. God love them, one wonders how they feel about the situation. Just because some of these children can communicate or are verbal does not mean that they can actually communicate and, unfortunately, things escalate when they get home. The parents and their families try their best to help their children but when there is nothing from the HSE and mainstream education is not supported then we fail these children.

However, when you have no support from the HSE and mainstream schools are not supported, we have to consider who is being failed and we are failing the child. It is definitely all the way across, including the mainstream, the special classes and special schools regarding the HSE and a clear pathway between the HSE and education. With the change of the Minister responsible - I believe it is now the responsibility of the Minister, Deputy O'Gorman - these need to be working together to find one big pathway by which a parent can get the diagnosis and can take their time to understand the diagnosis. It is an awful shock when you get a diagnosis. Sometimes, it can be a bit like a funeral. Parents bounce back but they cannot do so when they are fighting. Parents are fighting the NCSE and are looking for places and spots. A clear pathway is needed in which parents can enter a system and log everything in with information about where to go, instead of being handed a load of sheets of paper to look for schools. This is where parents' groups come in. This is what we all do because parents come to us to ask where to go, where are the suitable schools in the community, where is the nearest children's disability network team, CDNT, what do they provide etc. It is awful for parents who have been in the system for so long like most of us here, who have kids who are eight, nine and ten years old, to have to sit brand new parents down who think they will get everything and explain the reality that they might need to take out a loan to access private therapies. When we are talking about everything in this committee, I really hope that members take notice that there are autistic children in mainstream education. They may be in an inappropriate setting or they might be in the right place but they still need extra help, especially as they go forward. Respite or adult services might not be for them but we also know through As I Am that a lot of adults do not have employment. These are the big issues. The committee needs to be looking across the board at a whole system change.

I thank Ms Lowndes. We have invited the Minister, Deputy Harris, to one of our meetings this autumn to discuss third level educational opportunities as well. Deputy McHugh is next on my list. As he is online but not in the precincts of Leinster House, I will ask a question on his behalf. Do the witnesses feel that there is adequate engagement and a communication channel between their organisations and the NCSE?

Ms Margaret Lowndes

As a group, we had engagement with the NCSE and we have met Mr. John Kearney but I would not say it is adequate. The NCSE is listening to our concerns but we need action from it. We can all go in and say our area does not have enough of this or that we need this and that, but what the NCSE actually will do is what matters. I would not say it is adequate. They do engage but it is a box-ticking exercise in that a group is met, which will have them quiet for the next six months and then the next group comes forward. Mr. John Kearney and his team need to step up to the mark now and start putting in place proper procedures.

Does anyone else want to come in on that?

Ms Karen O'Mahony

We have a more positive engagement since Mr. John Kearney took over. Before that there was very little but I have been assertive over the years in building relationships with some special educational needs organiser, SENOs. We bring them into the Rainbow Club to give talks and meet parents and we distribute packs but again, that is just one community doing that. It has started as a very positive thing but before that we had nothing.

I propose that we suspend for five minutes as we are an hour and a half into the session and I said at the beginning that we would take a five-minute sos.

Sitting suspended at 12:34 p.m. and resumed at 12:45 p.m.

We are back in public session and I call the next speaker who is Deputy Joe Flaherty.

The witnesses have all said that they are very reluctant advocates. All of my colleagues and I are deeply appreciative of their attendance plus the testimony from all of them has been harrowing to say the least. As a Government representative, I am deeply embarrassed by the provision of services and the complete disconnect across multiple Departments, which the witnesses have properly articulated. I was particularly struck by a comment made by Ms O’Mahony who said that families have been badly let down by heavily funded agencies over many years and that is the reality. We are an advanced modern economy yet we look to Malta for a blueprint of a model on how to do things. The money is there and without question the challenges can be addressed but the problem is the different silos and trying to navigate across different Departments. I know that she got an email saying it was not a certain Minister’s responsibility. I am sure that the witnesses will not be surprised to learn that we get the same email, which shows the disconnect in the public service and that this is not just experienced by witnesses, as parents.

This committee has the best of intentions but the delegations need to see results. An immediate result that we should aim for is probably the summer programme. As Ms Jennings pointed out, the whole idea of the summer programme is not progression but to address regression, which is a very telling point for us to take on board. We are not being asked for supports to improve the education but to address regression.

My first question is for the delegation from Special Needs Schools and Classes. In terms of its aspiration to have the Maltese model in place for 2023, has the Department done anything yet about the matter? Department representatives have visited Malta but has the delegation seen practical steps taken in regard to the scheme? According to the group’s case study the programme needs to start from January onwards. Let us bear in mind that we are almost in October so is January realistic? Have they received an indication from the Department that the scheme will be rolled out in 2023?

Ms Miriam Jennings

We have had meetings. The Minister of State, Deputy Madigan, has set up a special education forum to examine matters like this one and we know that it has been discussed at the forum. Both the Minister of State, Deputy Madigan, and the Minister of State, Deputy Rabbitte, are well aware of the advantages of the Maltese programme. As far as I can remember, the latter Minister of State has commented on the programme. We do not have anything firm to update the committee about but we are working as hard as we can and communicating on it. As Ms Jenkins has said, we have communicated in meetings with Malta three times to constantly get to the bones of what they have established that can work here. We will meet the Minister of State very shortly so we may receive an update.

Ms Elaine Jenkins

Unfortunately, nothing further has happened since we forwarded the predictive figures for this year. Three months ago we sent the information on Malta but as of yet there has been no update. I am not sure if work is going on in the background with regard to teaching staff, unions and so on. I do not know if we have reached that stage but we have not heard anything.

It is very important that this committee lists the adoption of the Maltese model as one of its key actions. We need to start putting pressure on both of the Ministers of State to ensure action is taken to ensure this model is in place for next summer. We have heard how the lives of siblings have been affected and that grandparents must step into the role of carers after having worked all of their lives. Those situations are unseemly for a modern and so-called progressive nation.

One hears about grandparents having to step into the role of carers, having worked all their lives. It is unseemly for a modern and so-called progressive nation that this is happening. I will be impressing upon both Ministers that it is critical that action is taken on this. It is not a big demand and if Malta can do it - it is now looking at our special classes - there is no reason we cannot action it.

I am delighted to see Ms Jenkins here. She has been a great champion of those with special needs. We have had many engagements and it is important, having brought her all the way to Dublin, that we give her an opportunity to highlight a more parochial challenge. She spoke earlier about the connection between special schools and the children's disability network teams or CDNTs and how important it is that we get the information we need from the CDNTs and that such information is given to the schools. It is fair to say there has been a complete breakdown of the CDNT in Longford. Regardless of what figures one uses, we are all agreed that there is a staff allocation of 12.5 for the team in Longford but at the moment there are only 2.8 staff servicing that operation. There is only 0.5 out of 4.5 in speech and language therapy and the social worker has been off since just before Christmas. It is fair to say that it is a crisis situation in Longford. Ms Jenkins was one of the parents who, on behalf of the special needs classes and schools group in Longford, wrote to the Minister of State, Deputy Rabbitte, about this and copied in the local Oireachtas Members. She asked for an external review of the staffing in what is a calamitous situation with the CDNT in Longford. It is clear that the system is broken and is failing children and parents. Has Ms Jenkins had any response to the email she sent to the Minister of State? Has she received any update on what action has been taken to remedy what is, in effect, a crisis in the CDNT in the Phoenix Centre in Longford?

Ms Elaine Jenkins

No, unfortunately not.

The example I used that may have caught the Minister of State's attention, as well as that of Deputy Flaherty, is that of my own son. He started in an absolutely beautiful new, purpose-built special school in September but he was not seen by any therapist that year. The speech therapist from the HSE who came to the school talked to the teacher for 45 minutes about the six children in the class and then left. There was no plan put in place. Parents in Longford have been having conversations with the CDNT but we all have different needs. My son has sensory and speech needs while other parents have children with behavioural needs and so on but what we are getting is the same as every other CDNT. We are getting offered parents' online courses and are being told what we are not doing right. The most recent figures the parents group got are that there is only 0.5 out of 4.5 in speech therapy, 0.5 out of 4 in occupational therapy and 1 out of 2 in psychology. If memory serves me, there has been a shortfall in psychology for two years. As I said earlier, all of that is impacting how our children get on at school. If our children do not have a sensory programme in school and our teachers do not know how to put one in place - it is not their job to know - then there are issues. If our children have behavioural issues in school and our teachers are not trained in how to deal with them and we have no external behavioural specialist, then there are issues. The numbers are bad and the far-reaching consequences make them even worse.

I am conscious of time and the fact that my colleague is waiting but Ms Jenkins is probably being kind to the CDNT in Longford when she says she is getting the same services as those provided by CDNTs in other counties because that is not the case. We have many special classes in Longford that straddle a number of different counties and the principals in those schools are telling me the only engagement they have from therapists is from those in other CDNTs and other counties. An important message from today's meeting is that there is a crisis in the service in Longford and we need an investigation into the virtual collapse of that service. How is it the case that experienced therapists who worked there for years have, en masse, upped sticks and left to take up other roles in other counties? I will follow up with the Minister of State, Deputy Rabbitte. I am disappointed to hear that Ms Jenkins has not had a response to her specific request but I will follow that up.

I thank all of our guests for coming in today. The great value of this committee is that we get to hear of the first-hand, lived experience. What Ms Jones started off her submission with really struck me. She should not need to be here. There will always be a role for emotional support across parent groups, especially when parents first get that diagnosis, and for a sharing of experience and knowledge but parents should not be sourcing services themselves. They just should not have to do that. They have enough to do without that.

As Ms O' Mahony said to this committee, there must be much more of a focus on the child. The support services have to follow the child. I was looking at an organisational management chart recently and was reminded of it when mention was made of the NCSE. Just in terms of education alone, there are so many pieces to such charts. That is not to mention autism, where one is also dealing with health services, speech and language therapy and so many other bits and pieces and it is so fragmented. I do not know how parents manage to get their heads around it, especially new parents.

Ms Lowndes spoke about the situation in schools. I was a primary school teacher for 15 years before I arrived here but I know that if I was put into an autism classroom, I would feel like I was at the bottom of the mountain again. I would be relearning my job from scratch. I have talked to primary school teachers who are in autism classrooms. They are afraid to go out sick or to take time off for training because they know that a substitute teacher will arrive into the classroom and even with the best will in the world, that is going to be so disruptive for the children. As a result, they are turning up to school in all sorts of conditions in order to provide the best service they can with the training they have and the facilities that have been provided.

There are so many issues that we could focus on, including summer provision which is very important, but I want to talk about the CDNT structures. To pick up on what Deputy Flaherty said, I do not think that Longford is on its own in this regard. As I said to Ms O'Mahony, I know of one school in Waterford where children in the autism classroom are going to three different CDNTs within the county. The principal of the school would love to see the services provided within the school. My God, the children are there. Could we not have speech and language therapy provided in the school? Could we not have occupational therapy provided in the school? What is our guests' experience of the new CDNT structure? Is it working for parents and the schools? Is it working for everybody within the system who should be providing wraparound supports to children? When I was a primary school teacher I taught children with autism and I, like most people within the system, wanted to do my very best for them but I was not always able to put my hands on the levers that I needed. I was not always able to figure out the pathway to talk to people in CAMHS, to talk to the SENO or to the NEPS psychologist. There are so many bits on that organisational flowchart. I ask our guests to share their experience of the CDNT structure. Is it working for parents? Is it working for children?

Ms Sarah Murphy

I can talk about my experience. My son is 14 now. When he was younger, we lived in St. Catherine's catchment area and it provided a lot of the services. It had a multi-disciplinary team. However, Progressive Disability Services, PDS, has watered down those services. The aim was to remove the geographic element whereby the kind of service one got depended on where one lived. The idea was good, that there should be national provision and everyone should be getting the same services. It should not matter, in terms of one's diagnosis, whether one lived in Galway or in Wicklow.

My son went to a preschool which was run by St. Catherine's. They rented a house in the middle of Bray. They had a lot of students in there and provided speech and language therapy, occupational therapy and psychology services. There were new graduates in disability studies, people who had done social care and people who were training to be social workers. It was absolutely brilliant. He was there for three or four years before he started school. He did not start school until he was six.

That service is gone because the funding is gone from St. Catherine's. I think it went a good bit before that. Then he went into mainstream, and then it was the HSE's services. He has Down's syndrome as well and most children with Down's syndrome have speech and language problems. Within the HSE disability services, it took maybe two or three years to get things up and running and meanwhile he is growing up. Now with the new progressing disability services, PDS, he has moved on and is in a special school. There was a speech and language therapist in that school but that therapist is long gone. He has not had speech and language therapy for six years or maybe more. I cannot even recall. Unless I pay for it myself he does not get it. The social worker from the services came out but that is it. I feel a bit sorry for her because she has nothing to offer. She has come with empty pockets because they do not have the therapists. The therapists who are in there are so inundated with so many needs. There has been such a lag because it took so long to implement the thing in the first place that the therapists are moving to the private sector where we pay them to do the services. We had something ten years ago that really worked for my son. It was absolutely brilliant. But anybody who has a four-year-old now has nothing. We had a good start for him and I am very grateful to St. Catherine's for that. There was a very good CEO there who, a bit like Miriam's school principal, thought about how they could make this work for the child. It was all focused on the child but in my opinion, what happens now is that everything is very systems led. It is about the Act or the school or the service. There is lip service paid to "It is about following the child". In fact, none of these people would have jobs if it was not for our children, but it does not follow the child. It is really about the system. One must fit in. Any services to which my young fella had access, for example when he was six and in St Catherine's, he completely lost when he moved schools. It took years to get those back up and running. Once they did get back up and running we made a few relationships with therapists. Then that was lost again because the new progressing disability model was brought in and the new CBT team.

It was not a positive experience.

Ms Sarah Murphy

That is the answer to the Deputy. You would be exhausted following it. You get kind of cynical in the end. You end up learning an awful lot yourself as a parent. That is my experience.

And it falls back on the parents to provide speech and language, sensory diets and all the rest of it.

Ms Sarah Murphy

You become an expert. We could do it. I could have trained to be a speech and language therapist in the amount of time I have been waiting for him to get speech and language therapy. Now he is almost selectively mute. He has stopped talking.

I suspect that nobody here has a good story to share about the children’s disability network teams, CDNTs.

Ms Caroline Poole

We would call the team when we were with the school age team. I found the support from them fantastic in the school. If I had an issue they would go in. He was in mainstream. I would just ring them and within a couple of days they were in. Now, I am constantly emailing and told that he is going onto the older team. He has been with the team since he was six and I was never told there was an older team that he was moved on to. If he is not in crisis they would see him for a few days. When we email they would see him for a few appointments and then say, "We will ring you." That is it. The last one was in August and I am still in the same situation and he is still in the same situation. He has just been forgotten.

It should not be the case of the squeaky wheel. There are parents who may not be as able as the witnesses are to pick up the phone.

Ms Caroline Poole

Definitely.

Their needs might be just as great.

Ms Caroline Poole

We have to do it-----

Of course. You have to advocate for your child.

Ms Caroline Poole

If I do not do it, something drastic could happen. They just seem to say "Okay, we are with you, we will bring him back." and then they say he seems okay but he is not. It is just exhausting to keep ringing them and chasing them. Do they think I want to be doing this? I was happy with the school-age team because as soon as I rang them they went into the school, I went in, and we met to come up with a plan that would work for a while. If that fell through, I would ring them again and the same thing would happen. We are in the system and yet are getting absolutely nothing. I asked them to go into his new school to his autism class. The psychologist went in and she came back out. I feel that just because he is in an autism class that he is forgotten about, and they feel the school can deal with it. It is a new autism class, they are new and as they have said to me themselves, "We are only teachers." They are fantastic teachers but they do not know how to help him. It is the Coke bottle effect: they do not know how to reduce that so they send him home and then he is exploding at home. But we have nobody. Then I will have to send another email and I might get another three more appointments and then we are dropped again. Where do we go from there? If the family has other children who are struggling, a parent cannot split themselves into two to try to look after a new diagnosis plus the child who has been diagnosed from a young age. It is not fair.

Ms Jennings referred to the impact on the other siblings. A parent is only one person.

Ms Miriam Jennings

It is not fair. It is very sad. It is a reality. It is a very sad consequence, and an unintended consequence, of parenting a child with a lot of needs. We ask for very little and very little can make the difference there. Consider a little child getting her summer holidays at the end of June but her brother, who might be five or six years older and be a big lad at 6 ft with a lot of medications going in and a lot of issues going on, is also getting his holidays at the end of June. There are no days out. There might not even be a summer camp for the little sister or the little brother because mum cannot physically get everyone in the car to bring them there. It is very sad for that child. It is very difficult and stark.

Ms Margaret Lowndes

There is a massive inconsistency across the board between the services. I can speak to two services in our area, both of which are doing different things. One is constantly doing parents' courses and the other is starting to bring in group interventions, if you want to call them that. These are six weeks of Lego therapy, which is fantastic but it is only six weeks. By the time you get to know that child - or the eight kids that you have there - you are finished and left for the next few months without them. While the CDNTs look really well on paper, the reality is absolutely totally different. You have to be at crisis point and on your knees before you will get anything from them or before they will enter your school in our area.

That is even fragmented again because there is the HSE, Enable Ireland, Brothers of Charity, and probably other providers in the space as well. How on earth does one make that coherent?

Ms Karen O'Mahony

For us, many of our families have similar stories but we also must acknowledge that there are families who have multiple children with diagnoses. Some families have three and four children diagnosed. It is not an easy journey for one child, so consider the navigation for families of four and five with two or three children on the spectrum and two that maybe are not. There has to be somebody there to support that family. It is not okay any more to say that PDS will do. It has been spoken of over the past nine years but it came in at a time when we were already at a crisis point. There were already waiting list numbers through the roof. The pandemic was another excuse for them to pull back loads of stuff. They could have very effectively still rolled out services in a very safe way. They could still have come back earlier in Covid and done that but the support was not there and it is still not there. That needs to change massively for families. There will be massive fractures. A lot of our young adult non-autistic family members have mental health issues because of the life they have been living and are living. They are falling through the cracks also. Families are trying to navigate it all and they are expected to be the occupational therapist, the speech and language therapist and the psychologist. It is easier if the supports are put into the school where they can help to support the teachers to do their job better and to be more confident about teaching in that environment. We know then that the family has a little bit of a buffer. The child is in school and they have the therapists in the school so the educators and the therapist are working together. That makes life a little bit easier but it makes a hell of a lot of difference to that child. That is the most important thing. The children are the centre point here. This country is not child centred and it is shameful that our children are not looked upon as being the centre point. That really does need to change.

Ms Elaine Jenkins

There was one point I wanted to make about the therapists who are leaving the HSE.

It is quite lucrative to do so because they now have very substantial private practices. Prices are increasing constantly and there are huge waiting lists for them. It is hard to see what motivation there is. However, we must refer back to families. In many families, one person, myself included, would have left work to become a carer. A person can start out with a two-income family to get the mortgage and then there is only one family income. This winter, there will be people who, if they are able to get private speech therapy, will have to ask if they pay for that or the gas bill. We have created an industry which is only detrimental to our families. We need to figure out how we get therapists back into the system so that families are not left with the burden of choosing what to pay for.

Ms Margaret Lowndes

With all the increased costs of living, gas bills and energy bills, what do you pay?

In a basic equity sense, it should not matter to the provision of a child what their parents' income bracket is. In a republic, there should be a standard base.

Ms Karen O'Mahony

The funding is there, however. All these service providers are getting significant funding. Where is it going? We are not seeing it on the ground.

Ms Miriam Jennings

It is by no means a solution but I would refer back to the case study we did on the students who took part in the summer programme. They were our future therapists. I am thinking of the experience they had there and the commitment they felt to those families. They are now signed up with those schools to come back on a locum basis. They have committed to the vision. Is that a way of retaining our therapists here in the schools and being our future supply? Supply is a huge issue. There are benefits to sorting out one thing and getting an additional benefit and flow through.

I will bring in Senator Currie. She is my colleague and a strong advocate on autism. She is not a member of the committee but asked to attend the meeting today.

I have met many of those here already: Ms Jennings, Ms Jenkins, Ms Kenny, Ms Jones, Ms Poole and Sylvanna McDaniel who is not here. I thank them for coming. It is nice to meet the others too. It is to be hoped we can stay in contact after this. The system is upside down. We do not have a system that supports parents. The parents support the system.

Ms Jones' submission spoke of how these things are considered a luxury when they should be basic. Ms O'Mahony spoke today about how it is not child-centric or joined up. It is fragmented and piecemeal. Ms Jenkins is right that an industry has now developed. An ecosystem that is not working for families has developed around its survival. It highlights how important this committee's work will be.

I find it hard how it is often one step forward and two steps back. We opened a special school, Danú, in Dublin 15, but the behavioural therapist is there to engage directly with staff, not with children. It is not a full-time therapeutic service. I do not understand that. The summer provision is there to support the most vulnerable children, yet they are not the ones seeing the benefit. During the summer there were parents identifying the gaps in data and the need in Dublin 15 for special classes. It was not the NCSE leading this but a parents' group. We talk about these children being our most vulnerable but we do not have mandatory training. We expect the schools and the principals to adapt but we are not making that happen. All the answers are there. That is another frustration.

Will Mr. Kenny, Ms Jones and Ms Poole tell us what it is like when a parent comes to the support hub and how it helps them practically? What is the Dublin 15 hub doing that can be rolled out nationally? I ask that of the others too. I believe the answers are in this room.

Ms Ciara Jones

I opened up the hub initially because I did not want anyone ever to feel as lost and as lonely as I did when my son was diagnosed. I wanted to create some sort of safety net for parents of newly diagnosed children. When they come through the door, they are really in crisis. They are in an awful state. Initially, when they contact us we read their emails, which are very much about the child, their diagnosis and what they feel they need to put in an email to get an appointment. Very soon, after the parents come in, it is about the emotional support they need for themselves before we even move on to the children. We see parents who are broken and are very lost. As parents or as expecting mothers, we have expectations. We assume our children are going to go to school and to talk, but when your child is diagnosed as being autistic, those expectations do not exist anymore. The child might not go to school and they might not be able to speak. I never thought my child would be unable to say "I love you". I spend some of the time wondering if he even feels loved. They are not things we expect to have to deal with as parents. Parents who come through our doors are so desperate. It is the breakdown of everything that has led to that point: the lack of support and information.

The reality is simple things like putting a schoolbag on a child's back does not always happen for a parent of a child who is autistic. They do not even have a school place half the time. I had to fight very hard for a secondary school place. We imagine when we put our children into school, they will thrive at five years old. As parents of autistic children we are lucky if we get a school place, and if we get a school place, we are lucky if it is in the appropriate school setting. If it is not, it is just an avalanche of pain and regression. When somebody tells you your child is autistic, it is like they take your child from you. Everything you thought is gone. They hit a reset button. Your child is given back to you but everything is gone. The expectations, dreams and what you thought would be is gone. You are on your own journey and it is a lonely journey because nobody is there to help you and nobody understands.

Unfortunately, we are in a situation today where, as parents, we are reliant on our children to teach us what they need because we are learning from them. We do not always have the tools for our children to learn from us. We are dependent on other people to help us. That is through services and schools. We assume our children are going to make friends when they go to school. It can be a simple thing like that. Our children sometimes do not even have the ability to make a friend. That is another worry for us. They are not in the appropriate school setting. We are putting our children into autism classes when principals who choose the teacher to teach our children have received no training on what autism is. How are they supposed to make the right decision on the right person to teach our children when they do not understand themselves? There are little things.

We help our parents when the domiciliary care allowance, DCA, application is rejected. We know that 60% of appeals are passed by the second officer, so what did the first officer do? They did not even look at it. I think of the hours we help parents to put into DCA applications. It is traumatic. They have to put in everything. It is so much information.

It is almost like a counselling session for parents when we take them through the form, because they have to verbalise the reasons they feel they are entitled to DCA. They have to verbalise their children's disability. They are sometimes nearly hearing it for the first time. We come in behind those parents, we listen and we help. We empower them with information and we empower them with support. We let them know that we are there each week and that they can come back. Even if they are not stuck for something for their child but they are feeling low they can come into us.

The reality is that we are so busy trying to help our children and our children's mental health, that too often the parents mental health is forgotten about. I see it all the time. Week in, week out, we see parents, just like Ms Jennings said, who are worrying about the siblings. My children would not even know to put themselves first. They do not even know what that means. They do not expect to be put first. As parents, we always worry whether we are doing enough. We are always worried about getting it right.

The hub has provided so much support. We will open our doors on Thursday for the third year. We have seen more than 160 families come through our doors over that period of time. That includes families who feel empowered, who no longer feel alone and who feel supported. Sometimes, if they are lucky enough, there will be a place in Ms Kenny's social club. They can come and they can meet families. It is an unbelievable service. If we had one of them in every town and in every county, at least parents would feel that they were not alone, that they had this knowledge now and that they had this power. At least they could stand on their own two feet and try to help their child in a little better than they had been able to because they are stronger.

This is a parent-led support. That is what I am talking about. What parent-led support can be replicated across the country?

Ms Ger Kenny

I thank the committee for the opportunity. I will continue from what Ms Jones said about the support in Dublin 15. My own story is that my son has now just turned 21. Nearly nine years ago, there was nothing for him there socially, nowhere for him to go and nothing for him to do, so another parent and I set up the club Little Seeds Arch Club. We are affiliated with the Arch Clubs umbrella, which is for children and adults with special needs in Ireland. I would love to see similar clubs in counties in Ireland and for them to have their own support groups.

Little Seeds opened its doors nine years ago to seven children and we now support 70 families. The children are from the age of seven to 22. We have a girl who is 22. It is fantastic for them to have their own safe environment and they love that hour. We do Lego with them, we play basketball and we get professionals in to do occupational therapy with them. We have outings in the summer when the club stops, because it is like the school year and it runs from September to June. We organise outings where we bring the siblings along and make them feel just as special. I would love to see this rolled out across all the counties in Ireland. Many of them have clubs, but I know there are not as many in the midlands. I would love to see Little Seeds replicated.

Many of our families are on waiting lists for therapies, both private and public. Little Seeds provides autism therapy services through fundraising. Ms Jones has done fundraising for the club. We are able to offer subsidised therapies which include music therapy, play therapy, sibling workshops, yoga, well-being and art. Through our own fundraising there is so much that we can subsidise for families who are struggling. The parents get on so well and they are not alone on this autism journey.

I will speak for myself. My son, Mark, is 21 now. I know what it was like 15 years ago when services were still as bad. It was a lottery as to whether we got a little therapy and whether Mark had a class to go to. I can remember ringing and being told they would put my son on a waiting list. In the years that have lapsed since Mark was diagnosed, we are probably still in the same situation with waiting lists for therapies and for everything. Really and truly, we should not be. Ireland is such a great country in a lot of ways. It is not a Third World country. Our children and our parents should be at the top of the list. We are the spokespeople here today for our children. We are their voice and we need to make a difference.

There is the idea of rolling out what they have in Malta was mentioned. We should be replicating that. That model seems to be going so well. Ireland should be far greater at catering for our children than what it is.

Ms Sarah Murphy

I am sorry that I keep going back to the issue of complex needs. For example, in Bray, Bray Lakers is a very good service and it provides an after-school activity. It has an hour class here and an hour class there. However, I cannot bring my son to that because he will not go in. This is particularly the case if there is an intellectual disability with autism and with other things as well, in particular a moderate intellectual disability. He needs stability, routine and predictability. School provides all of that for him.

I have tried every special group. I said I wished I lived in Cork because the Rainbow Club sounds great. Everybody does little bits here and there. I tried special needs rugby, soccer, Bray Lakers and everything else. I have tried every group out there to try to progress, but he does not have the capacity. It is so stressful for him and for me trying to get him to do these things.

We have schools everywhere in the country. Every town, city, county and village have schools. That is what he loves. He loves school. Schools run all day and this allows me to work. I am a single parent and this allows me to work to earn the money to pay for everything like we all have to do. We already have a lot there. We just need to tweak the school system. While I am all for the extra clubs too, many complex needs children cannot access those clubs, just like they cannot access home-based provision. The Department states all the time that one can a home-based tutor if they cannot the July provision in school. However, there is so much about being in school, such as getting on the bus and all the minutiae of life that is important to people, both children and adults, who do not really understand because they do not have the intellectual capacity. We build this life for them that they can enjoy and that they can progress in but we have to do it within the boundaries of what works, so introducing lots of new things like a tutor, for example, for home-based provision does not work for my son and for many children with complex needs. It is so stressful. He could not tolerate a stranger in the home. We could not have him going on an outing, for example, with a tutor. He is 6 ft., he is a massive, they would be terrified that he would run off and there would be safety issues. He is not really verbal so he could not say if anything went wrong.

The GAA and soccer clubs all get money. All these mainstream social groups get money to provide a service, which is great for the kids who can access that. However, there are a number of children, mine included, who have an autism and intellectual disability, ID, diagnosis along with other issues and who cannot access that. That is what happens with summer provision. There is a lot of money going into it, but the people and families who really need it are not able to access it.

Ms Margaret Lowndes

I wish to come back to the point about parents bringing up the data and campaigns. It is left to parents to put campaigns together. They can find this data. I find it amazing that the majority, including ourselves, have found this data. One of the reasons is that the NCSE does not keep data. The committee should know it is something that needs to be brought in. We need a centre and a database system. The NCSE needs to work on how it keeps its data. As far as we are concerned, when we started out, we were told there was very little in our area, which was true. It did not have the number of children or anything.

We have not even talked about preschool today.

Ms Margaret Lowndes

We have not talked about preschool and secondary school. It is an absolute shock that it is one of the biggest systems. The Department of Education relies on it for information. However, its information is not always correct. As people know, when talking about preschools, we are also talking about children who are on waiting lists to be diagnosed. They are not taken into consideration either. They also add to the waiting lists for databases for autism classes and such. It is a shame that it is down to us to have to do this. We have to do it through parliamentary questions and freedom of information requests. Why can the NCSE not do the same thing? The committee needs to look at why there is no data available through the NCSE or the HSE.

It is a basic.

Ms Margaret Lowndes

It is a basic. It is a given.

Ms Karen O'Mahony

I wish to comment on that as well. I am conscious that I am the only person from Cork here today. We have been talking to Ms Lowndes about how the model that Rainbow Club is offering. The youngest children are two years of age. These children are not in school or preschool. Some of them cannot go into the preschool because there is not enough access and inclusion model, AIM, provision. Therefore, we are now having these children as well.

Quite a number of our children have complex needs. We have certain rooms to cater for those children’s needs. However, it is all about the model and the pathway. When a family comes to us, they are giving us their information, the child’s diagnostic report comes to me and I read through it. We look to see where the child’s difficulties are, the challenges and what we need the staff to know and how they can provide support. The next thing is that the child is placed and mom and-or dad will come to meet with us and see where the other provisions need to be put in place. The siblings are sent to sibling group. If there are other therapeutic interventions that they need, that is all done through us. Again, we do the school liaising, forms and phone calls. We recently sent out packs to all of the GPs in County Cork because they needed to know where we are and what we do. There is a very clear transition for a child. We send out photographs of the room and the staff. We tell the parents what to do when they come, such as not to come too early so as not to wait, and all of this other stuff. The information is given to the staff. All staff have access to that. Every staff member who interacts with that child knows exactly what he or she needs.

We are adding to that all of the time. As challenges come up - and there are difficulties - we are adding to that information and addressing them. We are putting in the whole sensory diet. We have families that will have their children come to us after school. Some will stay two and three hours because mam is on her own, she works and the grandparents will be minding this child with very complex needs and are not able to, so we take the child.

It can be done and it is working. It is already in play in Cork. We did not have anything when we started. There was nobody I could go to for information. We started everything - policies, all of our implementation, all of our strategy and what we were going to do. The pathway is there for the child. When we feel the child is ready for another step, we bring the parents in tell them we think the child is ready to move on. A load of our children graduated to the teen hub this year. They were ready for the next step of the journey. Our life mentor coach will go into schools and help many of our older lads with the next plan for college. It is very doable. We have been doing it, and we are not a Department.

We have had loads of conversations with Ms Lowndes as well. We are also talking to Waterford about replicating its model. We are looking at the Dreambig Project down there. They have a very similar vision. This is something that can happen; it has already happened. We are all on the same page and want and need the same thing. We have identified very clearly what needs to happen. We should be getting support and help to make that happen and make life a bit better. If we all come together, it can happen much faster.

Our guests are an incredible bunch of people.

I am conscious of time. Ms Murphy, Ms Jennings and Ms Jenkins have to leave before 2 p.m. to attend another meeting here in Leinster House. I am actually the final speaker, but a number of members indicated that they want to come in with supplementary questions. Please keep it two minutes for question and answer and perhaps direct questions to specific people or groups.

I have a follow-up point. I thank our guests for coming in. I know that it is stressful for them to come here and describe the circumstances of their children's situations and what they have had to go through over the years. I thank them for doing that. I know that it is not easy.

The system Ms O’Mahony described works because it is proactive. It anticipates the needs of the child. It could, as she said, be replicated by the State, if the State were to anticipate and co-ordinate the different things and come at it from the parents’ and children’s perspectives and not its own perspective in the context of how matters have been organised historically. I work with Vicky Casserly in respect of children in hospital. Again, we try to anticipate things the child and parent need. For example, if parents are in a multidisciplinary situation, we seek to ensure that all of the appointments are on Mondays, instead of three or four different days over two weeks, in order that people to not have to fill their cars with petrol three or four times or make three or four different childcare arrangements. It involves thinking about matters from the perspective of the person who is using the service.

In that vein, I want to come back in very strongly on the points relating to CAMHS and medication. Our guests are experienced in dealing with the education system, the HSE and all of these different things. While I know all of those are very difficult matters, our guests have a level of knowledge of the system and their children. That is an impossible thing to replicate when it comes to medication and the pharmacology of medication and what that means when it comes to managing side effects and the child’s growth.

My son has very bad epilepsy. His medication was changed in April. We got a cancellation appointment with a neurologist tomorrow in Crumlin to go back and check that. I was just thinking about our guests when I left. My child has a neurological injury. He is getting a follow-up appointment. Our guests’ children have neurodiverse situations and they are also under medical supervision, albeit a different type, and their children, who are on medication, are not being supervised or followed up with in the same way.

I never do this, but I want to state my view on CAMHS and a system that allows that to happen. It is negligent beyond words. It is criminally negligent to put a child on mind-altering medication and fail to follow it up in an appropriate way, every six or 12 months over the period, and to fail to care about that child, not just proactively, but to make sure that it is done properly. I am sorry to be so strong about something, but I feel that this is something that is out of our guests’ hands and their control and I just want to make the point very strongly.

Ms Elaine Jenkins

I wish to make a point about CAMHS. A child can be diagnosed with ADHD without physically being seen by CAMHS. They do not attend the school and they do not go to the home. Many of our children would not readily go to these settings. Trying to bring them into these settings and behave the way they normally do would be like putting a cat into a bath. I know of diagnoses where they have relied on forms filled out by teachers and school staff, but they have not seen the children. Those diagnoses then lead to medication.

Ms Karen O'Mahony

We had a couple in last week who had a young boy in a very bad way. They got an emergency appointment with a psychologist, which was done on Zoom.

Can they not come to the house?

Ms Karen O'Mahony

Exactly. This child-----

I do not want to ask a stupid question, but can they not come to the house?

Ms Karen O'Mahony

He has a history of needing this help and that was done on Zoom.

Ms Margaret Lowndes

There is also the fact that CAMHS and CDNTs do not speak to each other. Yet, you cannot tell one without the other. At the moment – they will know now - I cannot tell CDNT that my fella is waiting to be seen by CAMHS, because they will both fob each other off.

Ms Karen O'Mahony

One cannot be with both.

Ms Margaret Lowndes

No.

Ms Karen O'Mahony

One can only be with one or the other. One cannot be with both.

Ms Margaret Lowndes

That has to change.

(Interruptions).

Ms Margaret Lowndes

You are on both? We have been told "No".

Ms Karen O'Mahony

We cannot.

Ms Caroline Poole

Many people can, but not with autism.

I thank our guests again for coming in. Some of their testimony has been harrowing, but it was very important it that it was placed on the record. One of the probably most alarming aspects has been what Ms Lowndes said in terms of the new CDNT and the PDS programme, namely, that unless people are on their knees, they will not get a service.

It seems that a monster has been created with the new structure that is being rolled out. Somebody has to say "Stop" and that this is not working. That is an important message to come from this meeting. I know that one of the groups is to meet the Minister afterwards. It is certainly a message we will be articulating. We will reference the email that parents in Longford sent to the Minister earlier, just to give them voice as well. Longford has been deteriorating under CHO 8 management for many years and the retention of local staff now seems to be another serious issue. Other local counties, while not fully staffed, are managing to provide a service. The progressing disability services programme has been in place for more than ten months but, rather than the support increasing, it is decreasing dramatically. It goes to the heart of what Ms Murphy said in respect of it not being child centred and the services not following the child. A very good example of that relates to special classes. If a child comes in from another county and another children's disability network team, CDNT, an SNA for the child is not guaranteed and suddenly the primary school has to carve up its limited resources. Everything the witnesses have told us today has cut to the heart of the problem, which is that the forgotten people in this are the children. It is a damning indictment on us as a Government, and for that we apologise.

My apologies again for leaving the meeting. A number of Deputies are running to different meetings and so on.

I heard the remarks of Deputy Flaherty. I missed part of the discussion while I was out of the room. He referred to a monster being created. I believe some of the witnesses will meet the Minister after the meeting. If it is appropriate, I ask that they send us a short email or whatever to let us know what progress, if any, they make. That can be sent either to individual members or to the committee - I will let the Chairman decide on that. It is an area with which I am not as familiar with as perhaps I ought to be and I would be interested to hear of any progress they make.

My second point relates to Deputy Carroll MacNeill's comments on CAMHS. I received emails from parents, especially after the south Kerry issue, regarding children being over-medicated or inappropriately medicated. I would like to hear the views of our guests on that and how to protect children from that happening. Parents go to the expert; the person who knows. It is their child. One is always in a more vulnerable position when one goes to a person who knows more; it does not matter who the person is. How can our guests, as parents, advocate strongly in this position and feel that they really have a voice here?

Ms Jennings made the point earlier that principals have stated the numbers are decreasing and they just cannot get the numbers to work. As regards the Maltese model, the documentation provided by the witnesses states that it is originally offered to school staff who not only earn an increased salary to work in special schools year-round, but are also well rewarded for completing the summer school. That is something we need to consider because people have extra costs, such as on childcare, transport or whatever, but we should be upfront regarding people also needing a break and time off. The document further states that when numbers to run the programme were not achieved, there was an expansion to recruit staff from other disciplines. There are two important pieces there. If we could use them, it might make the job of some principals a bit easier. I read what the principals said and what the students said. It was the only thing in all the documentation that gave me some hope.

I, too, apologise. I had to leave to attend another meeting.

I wish to follow up on the issue of employment. The difficulties we have in CHO4 are well known now. On average, it is taking eight to nine months to employ a home care worker, let alone therapists and whatever else. I am familiar with the Rainbow Club and how it successfully hired people in the recent past. Have any of the witnesses who are involved in advertising for therapists or whatever the case may be found it difficult to hire those people? The HSE is telling us that is its biggest difficulty. In my CHO, there is 38% vacancy rate for employment. That does not instil confidence. Are the witnesses experiencing the same difficulty as the HSE in hiring therapists?

I spent 15 years in a classroom as a secondary school teacher. I never received any modules in special education. That is going to back to 2002 or 2003. If I were to lose my seat in the morning, I could well find myself in a classroom tomorrow, teaching kids with a variety of needs, or in the ASD hub that is in my school at the moment. To be honest, I would not be prepared for it. Is there a need for a new teaching degree that includes this specific pathway? What is our guests' experience in that regard?

Ms Elaine Jenkins

It is something for which we have advocated and we have discussed it with the Minister of State, Deputy Madigan. Our children are often difficult for us to understand, so, with all due respect, how can we expect an educator to understand all the children in his or her classroom, who have a variety of needs? I do not pretend to understand dyslexia or dyspraxia because I do not have experience of them. With one in 20 boys on the autism spectrum, according to a HSE psychologist, the teaching unions, the teaching colleges and the NCSE teaching council need to step up and face the reality that there are diverse needs in every classroom every day and those needs are not being met. We covered the fact that the lack of therapists is exasperating the whole issue because children are not having their sensory needs met. Teachers do not know how to teach children how to communicate. They might do a two-week picture exchange communication system, PECS, course but that is not going to bring our children up a level.

A big concern we have is that there are no ambitions for our children. A lot of the attitude is to get the children through this year. A teacher will do his or her year or two years in the autism class and it will then be somebody else's turn. We want our children to able to read and write when they leave school, however. We need the basics for our children but that will not be possible until the teachers are trained. Other countries do it well. In Slovakia, students do part of their teaching degree and then focus on speech or occupational therapy to finish the degree. There are examples of other countries in Europe that do it really well. That should be the basic level; the minimum our children are getting.

Many teachers I know would like to go into educational psychology. That may be something they could do in the latter stage of their degree or as a postgraduate course. It may be that they could specialise in a field, just as nurses do. That is worth considering. I invite our guests to comment on the difficulties in getting therapists. It may be easier for them to do so than it is for the HSE.

Ms Ciara Jones

I do not think there is a single student in a teacher training college who will not have an autistic child in his or her class when he or she goes into a school setting. I do not understand why people would not want to get this training. Why does the teaching degree not include a module on autism? That would allow teachers to be the best teacher they can be for all students; to be a teacher who teaches inclusive education rather than having continuous exclusion. From the time a child is diagnosed, they experience exclusion every day, right through every step of life. It is not rocket science. We know that students studying for a degree in teaching will have autistic students, so why does the degree not include autism training? It is very simple. If I was about to begin teaching, I would be very frightened knowing that I would have autistic students but I did not have the appropriate tools to be the best teacher I could be and to make sure that those children would receive an inclusive education.

I will come back to that question in a moment. I am conscious that one of the group wants to leave and I want to say a few words before it does so.

First, on behalf of everybody, I think, and on behalf of myself as a parent, I thank all the witnesses for everything they do. They should not have to do it but they do it because, as has been said, they are child-centred and are thinking of the children and the needs of their kids and all kids throughout the country. The Government and successive Governments have let parents and their children down, and that is not acceptable.

Deputy Flaherty mentioned a case in respect of Ms Jenkins in my county and where we are at the moment regarding a disability team. We have 2.8 posts across the whole service. Last April Ms Jenkins, Deputy Flaherty and I met with the Minister of State, Deputy Rabbitte. In our county we had more than 230 kids waiting on an assessment of needs and more than 700 children waiting on services. At that time we had, I think, 11 posts. Now we have 2.8 whole-time equivalents: one psychologist, half a speech and language therapist, half an occupational therapist, 0.8 of a physiotherapist and no social worker. The reality is that we are not giving children the opportunity to fulfil their lives. Early intervention is early intervention, and that is what we need. I know from personal experience about going private. In particular, music therapy is something we did as a family, and I found it fantastic. It made a huge difference to my son's speech before he went to school. Some parents, however, are not in a position to do that, and that is not acceptable.

We need to call out the HSE. It is an absolute disgrace. The management of the HSE that deals with the filling of these positions on all teams across the country need to be called out because they are a disgrace and they are not doing their job. The Minister and the Government need to call them to account because their actions and inaction are failing children across the country. It is not acceptable. In other jobs and other lines of work, if you are not doing your job you lose your job and you are gone and replaced. We have asked the HSE to appear before our committee in a number of weeks to discuss the disability teams and the staffing levels across the country. What the HSE is doing now is disgraceful, as I said, and it is kids and families who are suffering. It is not acceptable any more.

Ms Margaret Lowndes

The roadmap that is coming will make many people nervous. We need to know what is in that roadmap and if it is suitable for all our children.

We need staff to implement it.

Ms Margaret Lowndes

Yes.

I have spoken about summer provision here before. I firmly believe that it should be mandatory that every special school provide it. There should be no question at all about that. The figure was given earlier that 80% of kids in special schools got no summer provision. We set up that provision years ago. It is disgraceful and-----

Ms Elaine Jenkins

We cannot let it be believed that the home programme is a viable alternative. It is not. Our children should not have to be sent off with strangers to access a Department of Education programme. That is very important.

Ms Caroline Poole

A tutor is not a viable alternative either. Just because someone is a tutor does does not mean he or she will work properly with the children.

That is a message we need to send out clearly across the Government. I have seen documentation for a particular special school to which I have referred here before. It has already decided that it will not provide summer provision in summer 2023. It has made that decision 12 months out. That is not acceptable. I think Ms Jennings made the point about a teacher in a school who took on and started work 12 months in advance and provided special summer provision for more than 70 kids who would not have got it otherwise. Ms O'Mahony took children on board because services were not being provided in her area. With no funding she provided summer provision for more than 1,000 kids.

Ms Karen O'Mahony

Yes, we have 1,020 a week. We had 286 children who did summer provision, 85% of whom had complex needs.

Ms Miriam Jennings

It is important to recognise, through our conversations with principals who are actively involved, with some doing part-time cover and so on, that we cannot keep arguing about the same thing with them. It is highly inappropriate for parents to be making contact with schools and asking them about this, which then creates this really bad atmosphere. It is not fair on any of the parties in education, parents or educators. We recognise by our study and our conversations the real challenges for them. It is really important we recognise and acknowledge also how hard it is to establish a programme in a school where there might be 70 children with complex needs. A principal is not going to choose ten of those children and say to the remaining 60 of them, "I am having a little lottery here." We need to recognise the challenges rather than having the same old arguments the whole time: "Why will you not do it?", "I do not want to do it", "I want to go on my holidays". The children are very hard to manage, but they are very hard for us to manage too. We hear the same arguments all the time. We need to bring this up a level. Let us look at the realities and find the solutions from today, based on the new research and the honest research. It will not be an easy fix, but there most certainly is a fix and we certainly have a budget. We had a budget of €40 million last year. We need to look at how we are spending that budget.

Ms Sarah Murphy

Also, the Department should not come back to us telling us to get home-based tutors. If I hear that again, I will crack up. One of the parents in the booklet we put together contacted 37 tutors. It is really awful. You have to go on the Internet to find a tutor for the home-based programme, so you have to advertise your child on the Internet. It is a terrible thing to say, but teachers and SNAs will choose kids they can manage. Nobody will take my young fella. To get that constant rejection is really difficult as a parent. We polled the parents in our group of children with complex needs, and 94% of them do not want the home-based programme, so the Department has to stop saying to us there is a home-based programme for us. That is just the emperor's new clothes. If it does not work, it does not work. The Department should stop giving us things that are not suitable and telling us, "There you go, you have it now, be happy with that."

Ms Karen O'Mahony

Deputy Pádraig O'Sullivan asked a question about therapists, and I am not sure they were-----

I will come back to that. Sorry. I was just conscious that the three ladies were leaving and I just wanted to speak to them in particular about the issue of the summer provision. I will let them go to their meeting with the Minister of State, Deputy Rabbitte. I thank them.

Funding was mentioned earlier and questions were asked about it. I believe we need to replicate what Ms O'Mahony is doing in Cork across the country. We need to replicate what Ms Jones, Ms Kenny and Ms Poole are doing with that wraparound parental support infrastructure in every single county in Ireland. I see the need in my home area. I have referred to the lack of services we have and the lack of summer supervision. That needs to be funded by the taxpayer. We cannot have the witnesses' groups out fundraising and begging for services to be provided to children, services to which they are entitled. It is not acceptable.

Ms Ger Kenny

Regarding the plan and the parent information talks, the cost of that is a Zoom licence for a month - even one talk per month. The cost is the speaker and a Zoom licence, and that is it, per county. Why can that not be rolled out? I try to reach out with the plan to as many families as possible. It has gone not only nationwide but also international. I get requests to join the plan's Facebook page. As I said, realistically, that is no major expense. Surely a few bob could be found and each county would know that it was Plan Longford, Plan Athlone and so on. Why can the money not be found? I and two other parents run this on a voluntary basis. We source the speakers. We get the best of speakers in. We alternate between doing it on Zoom and in person at a very small cost. Surely that would not take an awful lot of planning, and each county would feel that it has something. The presentation slides are emailed to the families afterwards so they can go over them again.

I was asked to do that by Tusla, which we are grateful has continued to fund that. I was asked to do it and I did not know where I would start. I enrolled a couple of other parents, we put our heads together and it has been a great success four years on. We have plans for Balbriggan and I am working online helping them to source speakers, which we share. We have plans for Dublin 5, Dublin 13 and Dublin 17 as well. Those are three plan groups so surely it is an easy thing to roll out to other counties.

And it has been proven to work.

Ms Ger Kenny

Yes.

I forget who mentioned it but another area that was brought up as well is the issue of the carer's allowance, where a parent has to give up work. I have a specific case where one parent has given up work, they have two kids with a diagnosis, they have a third child with autism, the father is travelling to work at 6.30 a.m. in the morning to Dublin but they are just over the limit so they are not entitled to a carer's allowance. That story is replicated in other families. We need to look at this and it cannot just be income-based, it has to be on the basis of where there is a need.

Ms Karen O'Mahony

The problem with carers is that being a carer should be identified as that person's job. It should not be the case that the parent is doing a job on top of that. Being a carer is a job and we should be significantly able to support that person who is giving up his or her job. We are one of those families; Jon had to give up his job years ago when Sean was not easy to manage. Could it not be looked at in a different way? The way that it is processed and the way applications are done is not fair. It should be identified that this is that person's role and that he or she is doing the job for the State during the day. It should be identified that he or she is the occupational therapist, the speech and language therapist and all of the other stuff during the day. There is a significant amount of caring with a child and that should be identified as being a role and a job.

Ms Margaret Lowndes

I am a carer. I gave up my job three years ago and my husband works. I have two boys who are on the spectrum but one is worth a full carer and the other is only worth half a carer. How can it be justified to do that to families that have two or three children? They should all be equal and the money should be equal across the board. It is not right that you can pick and choose a child. It is those small things; whether you are over it or under it you are hit either way. On top of that we have a few families in our support group that will hopefully eventually get back to work or would like to get back to work in the future. They would like to upskill but there is no course for them. A lot of them would like to go on and do speech and language therapy or occupational therapy but there are no pathways and when you find a pathway it puts them over the 18.5 hours. You look at the way it works and we are hit left right and centre, whether it is money or whether we are over or under the limits, on top of wanting to be able to go back to work eventually.

I want to make a brief comment on that. The vast majority of carers do not get the carer's allowance. It is a small proportion of them to begin with and you only get it if the person needs full-time care. The system as it is constructed is such that only a small proportion of carers get it. In that context, not having a means test is a reasonable ask. It would be a different thing if everybody who self-identified as a carer could say there should not be a means test but that is not how the system works. The witnesses are correct that this is something we should ask for because it is already restricted when it comes to numbers. I fully support what was said about special schools. They should be mandatory and parents should not be begging and asking. As was said, they are fracturing relationships with schools and causing difficulty. Perhaps this committee can do something about it but I thank the witnesses for that.

Deputy Pádraig O'Sullivan has a specific question.

The HSE is notorious for telling us how difficult it is to get therapists. I know that is not always the case and lead-in times are nine to 12 months for it to hire a therapist, at best. Do the witnesses have experience of that in their organisations and how has it worked out for them?

Ms Ger Kenny

I have been with Little Seeds Arch Club for the past nine years. We have two occupational therapists working for us for seven years and we have been lucky. Just last week we had a music therapist and a play therapist working on well-being. A lot of it can be down to word of mouth. For example, a parent might know of a therapist and give me the contact details. I make contact with them, meet them, talk to them about the club, say what we are looking for and what the age group is and so on. We have been really lucky and any therapist we have in Little Seeds Arch Club we have had for a number of years and we have been able to keep them. It works both ways; we are so delighted to have the therapists in and working for so many families and the therapists are delighted too because they see the work that is being done in Little Seeds Arch Club and they see that we can reach out to so many families.

I would always say to our families that if they are on private waiting lists they should stay on them and if they are on public waiting lists they should stay on them. What we can offer our families is something that can keep them going in the meantime. We will have a sibling workshop, we have mindfulness and in October play therapists will be working with some of our children who have a lot of anxiety around school. These will be much smaller groups so we could have 20 to 22 children in each of the groups we have in Little Seeds Arch Club. For the therapists, this new therapy service that launched with us last week would have much smaller groups. The music therapy will be on this evening so I had better get back in time for it and that is just for six young teenagers. We have never had that before and it is something new we are offering our families. We are delighted to say we are not Government-funded but that we are funded through fundraising and we can offer these therapies to our families. We got a lot of the therapists through word of mouth and I made contact with the therapists, met them, did their Garda vetting and so on. I spoke to them about the club, the families, the ages of the children and so on and everybody has been on board. We are lucky in Dublin 15 and I am delighted with the service we have been able to provide but it is not Government-funded and it has started from a little seed.

We have been assisting other groups. For example, in Athlone they opened their own arch club last Sunday and I was like a proud Mom looking on from the side. I spoke to the girls about Little Seeds Arch Club on a Zoom call and about how we operate in Dublin 15. Balbriggan is opening its own club in the coming weeks and Clondalkin and Skerries have clubs in the pipeline. Nenagh has a big group of 100 children attending and all of it has stemmed from Little Seeds Arch Club.

The work that can be done is amazing. We are a voluntary group, there are no wages and nor do I want any wages. It is all about the hours put in and it has been created from my son being diagnosed nine years ago when there was nothing out there for him. I could see how it was more difficult for him socially, including to make friends, because I have two older children, and I wanted something in the area for him. It started from that little seed and it has grown and spread through other groups and clubs setting up, which is fantastic to see.

Ms Margaret Lowndes

I will go back to the Deputy's question on therapists. We source them from the private side. Any organisation in private settings, including ourselves, would use those therapists. That seems to be the only way we can get them.

Has the Dublin 12 Campaign for Autism Inclusion had any major difficulty when it has required a therapist?

Ms Margaret Lowndes

Not privately. This year we will having occupational therapy groups and so on running and there has been no issue.

Ms Karen O'Mahony

Two years ago we identified that we could take in students. We had taken in students from University College Cork and the Crawford Art Gallery. One of the art therapy students who has come out and is qualified will come on board with us. Having students is valuable as well because you are not just giving them experience and a skill set but they are also getting the practical stuff during their time with us. That is another part of what the ladies were saying a while ago about the schools and colleges and about training programmes. Maybe it could be incorporated into their placements and they could be placed in schools and special school settings so that they can experience the practical side as much as the theory base.

Recruiting students is probably the way the next three to five years is going to have to go. We have already started identifying where we can bring students in and will start looking at recruiting them then.

Ms Ger Kenny

Can I make just one other point? Ms O'Mahony mentioned trainees. Two years ago, PLAN had a speaker for its parent talks and just before everyone came in on Zoom, I happened to mention my first baby and my club, the Little Seeds Arch Club. The speaker said that she had trainee OTs who were looking to work in such a club environment. This year we actually had 12 students who came out and worked for a number of weeks with our children. They were glad of the experience and we were glad of their knowledge. I am hoping to have speech and language therapist trainees as well. Getting trainee psychologists is my next move so I am open to any contacts or help. It works for the club and it works for the students as well. It works both ways.

The reason for the question was that I came across Ms O'Mahony and she has advertised posts in the past. I will not say she found people easily but a lot more easily than the HSE seems to be able to source staff. The HSE needs to see that and hear it. Turnaround times for us to employ therapists in community healthcare organisation, CHO, 4 are not working. It is like the situation described in Longford, there are posts ebbing away and falling away and not being replaced. The HSE needs to hear that people are willing to go working for organisations such as the Rainbow Club and in the settings that they have. This may be a question that only the HSE can answer. Maybe it needs to look at itself and see if it can learn from this. How can the HSE, as an employer, create an environment where people actually want to come to work for it like they do for these organisations?

The question needs to be asked if the HSE has engaged with the Department of Further and Higher Education, Research, Innovation and Science to make sure there are enough qualified people across all those services coming out. The reality is there is not and the HSE has not engaged with them. That is not forward planning or thinking by any organisation. The reality is that it is our kids who are losing out because of it.

Ms Ciara Jones

One of the key words is "keep". Even when they get them, they struggle to keep them. That is really important because such people seem to be only in the position before they are gone. As Ms Kenny said, some of the therapists have been with us for years but I think it is a case of what you give is what you get. That needs to be looked at. Why are they leaving? What can they do differently to keep their therapists because they are not staying and they are not being replaced?

Ms Karen O'Mahony

Ms Jones is right. The clinical approach is not working. That is why they are not invested in it. Our children are looked at as numbers. Every key worker has between 700 and 900 families, whereas for community groups and organisations like us, each family is not seen as a number. There is a person. A child is at the centre and that is what we see.

I thank the witnesses. Does anyone wish to make any final comments?

Ms Karen O'Mahony

I thank everybody. Some of us have met here in person, as opposed to seeing one another on Facebook. We are always encouraging one another along. I thank the committee for the opportunity from Rainbow Club, not only from myself and John and our family, but also from all the families we represented. It was lovely to be here.

Ms Ciara Jones

It is the very same for ourselves. When we started out, Ms Kenny was growing her Little Seeds Arch Club. Now we have 70 families being catered for, in terms of the social aspect right down to therapies. The Autism Support Hub opened as a result of personal experience. Everything we do comes from personal experience and because there are so many of those personal experiences coming together, we seem to be growing something very special. If we could only get the people in power who have the funding to have the same will and intention as us, we would go a very long way.

I thank all the members for listening to us and for having us.

Ms Margaret Lowndes

I thank the committee for inviting us. I have said it time and time again. The members are the only ones that can do this. They are the ones in charge. This is their job. There is a new Taoiseach coming on the scene soon. Members need to rally for our children. We are being let down constantly. Every single parent across the country is being let down. It is time now for change. We could talk about this day in, day out, and there probably are 40 other pages I could talk about but we need action. That is the top priority. We need action on the CDNTs, on education and then supporting all our support groups along the way. I think it is time to step up and make it happen for us.

I thank all the witnesses for coming and for all you do for all the children and families throughout your local communities. You are a model for parents groups across the country. As a State, we need to support and replicate what you are doing across the whole country. We need to support you financially as well for putting in a significant amount of your time to highlight the needs of our kids. I will give a personal commitment and I can speak for all the members of the committee also. This is a committee we wanted to set up because we wanted to make a change. The commitment is there from the leaders of the three Government parties to set up this committee. We want to put forward proposals next March when we will lay a report before both Houses that is going to make changes. Some changes have started to be made as a result of this committee being in place and issues have been highlighted in the national press. The will is there. I firmly believe action will be taken. I know that across all parties, we want to make a difference. We want to see changes made for your children and for my son. I have a young child who was diagnosed with autism and when Ms Jones was speaking earlier, I could remember when we were told the news as a family. I am very positive for his future and it is my job as a parent to work to make sure he gets the services, the intervention and the help to be what he can be. I give that commitment that we will work as a committee to make sure changes are made. We will not accept the situation as it is. The HSE needs to step up to the mark and make the changes and put the staff and levels in place for services our children are entitled to.

Your contributions will assist us in writing our final report. At the first meeting of this committee after it was established, we decided to meet parents and get the lived experience. We will formulate our proposals based on the lived experience of what is needed for our children. I thank you all sincerely.

As there are no other matters members wish to raise, that concludes our business for today. The committee's next public meeting will take place on Thursday, 29 September 2022 and will be a joint meeting with the Joint Committee on Disability Matters at which we will discuss accessibility in the built environment, communications and information with a number of groups.

The joint committee adjourned at 2.18 p.m. until 9.30 a.m. on Thursday, 29 September 2022.
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