Thursday, 14 November 2019
Progressing Children's Disability Services: Statements
I am grateful for the opportunity to have this important debate. When I became Minister of State with responsibility for disability services, I made three firm commitments, namely, to reform disability services, invest in those services and, most important, ensure the services are person-centred. It was essential to learn at first hand about the challenges and practical difficulties faced by people with a disability and their families on a daily basis. Through meeting with families and reading the letters and emails from concerned parents to my office, I am aware that one of the most crucial issues that needs to be tackled within children's disability services is the excessive waiting times to access therapy services. We all share a common desire to have the best services for all children, adolescents and adults with disabilities throughout the country. Both personally and in my capacity as Minister of State, I want everyone with a disability to have access to the necessary supports to enable them to achieve their full potential, maximise their independence and live a rich and fulfilling life.
There are two things that must be done if we are to meet these objectives in respect of children's disability services. Services must be properly organised and they must be properly resourced. The HSE is currently implementing the progressing disability services for children and young people programme, which requires a reconfiguration of all current HSE and HSE-funded children's disability services into geographically based children's disability network teams. The programme aims to achieve a national equitable approach in service provision for all children based on their individual need and regardless of their disability, where they live or where they go to school. The core objectives of the programme are to provide one clear pathway to services providing equity of access for all children with disabilities, according to their need; put in place effective teams working in partnership with parents and the education sector to support children in achieving their potential; and ensure available resources are used to the optimum benefit for children and their families.
The progressing disability services programme is working to meet these objectives by forming partnerships between all the disability organisations in an area and pooling their staff with expertise in the different types of disabilities to form local children's disability network teams that will provide for all children with significant disability, regardless of their disability. Children's disability networks will be established in each of the nine community healthcare organisations, CHOs, comprising specialist multidisciplinary teams to work with complex disability needs. Although a number of these teams have been in place for several years, I acknowledge that it has been a long and slow process to put the remaining teams in place. This is due to the lengthy but necessary consultations between the HSE and the voluntary providers and unions. I am happy that the HSE has advised that we have a final resolution and the disability network managers required to head the remaining teams have been recruited and will take up their posts imminently.
As Deputies will be aware, the Disability Act provides for an assessment of need for people with disabilities. Any child thought to have a disability born on or after 1 June 2002 is eligible to apply for an assessment of need, AON, that will detail his or her health needs arising from that disability. Since the commencement of Part 2 of the Disability Act in June 2007, the HSE has endeavoured to meet the requirements set out in the Act. When the Act was implemented in June 2007, it was the State's intention that applicants would be under five years of age at the time of their application. However, a subsequent High Court judgment had the effect of extending eligibility to all children born since June 2002.
Since the Act's commencement in 2007, there have been significant year-on-year increases in the number of children applying both for AONs and for disability services generally. This increase in AON applications has led to the extended waiting periods for intervention services currently being experienced. I am conscious that timely access to services is imperative to a child's development and I fully understand how delays in accessing the service are a source of great concern for children, their families, and my colleagues in the Dáil. The HSE is currently introducing a major reform of the AON process to reduce waiting times to access both assessments and services.
I refer to the new standard operating procedure for assessment of need. While the Disability Act provides for an AON for people with disabilities, it does not define this assessment and, to date, the process has not been standardised across the HSE. This lack of standardisation and clarity has also contributed to significant delays in the AON process. The new standard operating procedure will provide for a consistent approach to assessments throughout the country and the HSE is confident that it will greatly improve access both to assessments and interventions. All community healthcare organisations, CHOs, are currently preparing for this implementation, which will commence nationally in January 2020.
Budget 2019 provided funding for an additional 100 new therapy posts for children's disability services to be in place by the end of this year. This welcome new resource will result in additional new therapy posts, including speech and language therapists, occupational therapists, physiotherapists, dieticians, social workers and psychologists. Some 63 of these posts are in place with the remaining 37 expected to be in post before the end of the year. This latest recruitment of staff should be considered in light of previous investment, totalling €14 million since 2014, in therapy services under the progressing disability services for children programme. This investment has allowed for the provision of 275 additional therapy staff. In addition, significant funding has been provided to primary care services to improve waiting times for therapy services. This has allowed for the recruitment of both additional speech and language therapists and occupational therapists.
The Minister for Health recently announced €2 million in funding for the further development of an autism plan, which includes the implementation of a range of measures to improve health services for people with autism and their families. The funding secured will mean that a range of priorities can now be further developed and implemented. Children and young people with autism comprise a large proportion of the individuals that the HSE meets in disability services, but also in primary care and other health settings. It is important that the health services are equipped at every level to deal with these individuals and their individual sets of circumstances.
The HSE has established a national autism spectrum disorder, ASD, programme board consisting of senior operational and clinical decision makers as well as independent professional and academic support. More important, persons with lived experience of autism will participate as equal members of this important collaborative team effort. The board has been tasked with leading on an agreed set of priorities that will have the greatest impact on improving how services can be delivered to people with ASD and in respect of creating greater awareness of ASD.
Over the next year, the additional funding secured will be used in two priority areas, chosen after comprehensive consultation with service users, parents, and clinicians working in services for people with autism. The first area relates to implementing a programme of awareness raising that can provide a better information resource for children and parents about the supports available and help to create a wider public environment that is more aware of the challenges, needs and experiences of people with ASD. The second priority area relates to building capacity and competence amongst key professionals working with ASD. This is to include a national training programme for clinicians and the implementation of a tiered model of assessment to improve access to, and responses by, services for those with ASD.
As Minister of State with responsibility for disabilities and as a parent, one of the most frustrating experiences for me is meeting the parents of children who have additional needs and who are waiting for therapy services for their sons or daughters. I understand how justifiably angry they are at the length of time they spend waiting for a service. I am fully aware of how important early intervention is and how it can determine not only short-term outcomes but also shape a child's future. The initiatives I have outlined will not lead to a quick-fix solution to the problems of long waiting times for therapy services overnight but they are important, robust and tangible measures that will vastly strengthen and improve our services in a way that will ensure we can provide what children need in both the short and long term.
There is a young woman in Wicklow who has spina bifida and who is in a wheelchair. Her spine is curving as she grows, as a result of her condition. Her wheelchair cushion, therefore, needs to be adapted as her spine curves. I met her mum, who told me that she could not use her wheelchair anymore because her spine had curved to such a degree that she could not use the cushion. It causes her excruciating pain to sit in the wheelchair for any time. I asked her what her daughter does and I was told that she sits on the floor. I asked whether there was a new cushion coming and her mum told me that there was not and that they were still waiting on an AON for a new cushion. I asked her how long her daughter had been waiting for an assessment for a new cushion. She said it had been more than a year. That is the reality for children with disabilities in this country.
The Government talks about strategies, launches and initiatives but nothing seems to happen. The HSE disability team is doing its damnedest to help but it does not have the resources it needs. All over Ireland, children with disabilities continue to suffer. Parents might think their kid has an issue when that kid is aged two. That child may get an AON at five and then, perhaps, some support when he or she is seven. The potential of that child diminishes in those five years. That is the reality of disability services in this country today.
The Minister of State referenced 100 posts that were meant to be filled this year. It is mid-November and fewer than half have been filled. He also referenced 1,000 new therapy posts that are in the budget for next year. I looked at the numbers and there is no money in next year's budget for 1,000 post; there is only money for 160.
Almost 4,000 children with a disability are overdue for an AON. More than 8,000 are waiting for physiotherapy. Almost 20,000 children are waiting just to be assessed for occupational therapy, 8,000 of whom have been waiting for more than a year. They are waiting just for an assessment to be put on another list to get therapy. Almost 40,000 people are now waiting for speech and language therapy, most of whom are children. That is the equivalent of every man, woman and child in Arklow, Wicklow town and Greystones combined. This figure is just for children with disabilities waiting for speech and language therapy. As they wait, they deteriorate and the future they could have diminishes. Inclusion Ireland has found that one in four children with a disability is being denied the opportunity to attend school for a full day. This is not okay. The programme for Government states that people with disabilities should be supported "in maximising their potential, by removing barriers which impact on access to services, education, work or healthcare".
Children are being excluded. There has been a €1 billion overspend on one hospital, and there is no money. Some €3.5 billion has been spent on a broadband project that should have cost €500 million, but there is no money. There are unprecedented tax breaks for vulture funds, but there is no money. We have the biggest healthcare budget by a mile in Ireland's history, but there is no money. Even when there is money, there is no delivery. The solutions do not constitute not rocket science. We have solved this before, and other countries have solved it. We need to stop the overspending and target the money where it is needed, treat our healthcare staff well so we can keep those we have and hire new personnel, fund community healthcare properly so that children can be assessed - and when they are assessed they can get the supports for which they have been assessed - and use the National Treatment Purchase Fund as a short-term measure to get help now for those children who have been waiting.
I met a woman in Greystones recently whose child has special needs and requires help. He has been waiting for two or three years for speech and language therapy. About three months ago, the woman received two letters through her door on the same day. The first was from the disability service provider that serves north Wicklow. It stated that it had no resources, that it was not even going to put her son on a list and that it would be another two years at least before he gets any help in the form of his first therapy session. The other letter was a very nicely designed and printed leaflet from the Minister for Health, Deputy Harris, telling her when the Rugby World Cup games were on. She asked me: "How is there money for the Minister for Health to drop a leaflet through my door telling me when the Rugby World Cup was on, but he does not have the money for one speech and language therapy session for my son?" That is the reality of disability in this country today. We need to do better. The children deserve better.
Last month, Fianna Fáil received disappointing figures which show that the numbers of overdue assessments of need - as provided for under the Disability Act 2005 - had risen from 3,500 to more than 3,700 by the end of June. The Disability Act 2005 provides for an assessment of needs for eligible applicants with disabilities. Assessments of need must commence within a three-month period of receipt of the application and must be completed within a further three months. In the middle of this year, more than 3,600 children with disabilities were being kept waiting for their statutory right to an assessment of need, as provided for under the Disability Act. While the figures had been falling during 2018, they have since moved up again and have gone even higher. Things are getting worse. To have so many children in a position where they cannot access their legal entitlement within a statutory timeframe is wrong. This matter needs to be addressed urgently.
We have seen an ongoing lack of progress in the provision of children's disability services. At heart, the Minister of State is a big champion of those with disabilities. Unfortunately, parents of children who have been waiting for that all-important assessment of need come to our clinics weekly. It is not just about the three month wait after the person has made the application, it is about the wait for years to have that first assessment of need.
I put it to the Minister of State that the figures do not lie. I shall outline some of the figures as of August last. A total of 719 children aged between six and 18 are waiting for a first assessment of need for occupational therapy in Cavan-Monaghan. To put this figure into context, in Donegal, which is a significant county in the context of its size, there are 129 children waiting. The initial number of children waiting for an assessment for speech and language in the Cavan-Monaghan area is 629. Compare this to the Sligo-Leitrim area where it is 170 children waiting. There are 464 children in Cavan-Monaghan between the ages of six and 18 waiting for assessments for physiotherapy, in Donegal there are none and in Sligo-Leitrim there are 22. The figures do not lie and I do not think the Minister of State would even try to argue that there is not a distinct problem across Cavan-Monaghan with disability services.
My time is running out but I also wish to comment on the Annalee View respite centre, which offers services for parents of children with a disability and for the children themselves. The place was shut down because of an oil leak and we have been waiting for one year. The parents of those children have no respite for their kids since. We are no further on. The Minister of State has said that somewhere is earmarked in Cavan town and a HIQA report remains, but in the meantime there was a huge backlog in the first place for children with disabilities and since then the place has been shut down for one year. What is happening in Cavan and Monaghan in this regard is an absolute disgrace. The figures are what they are. I ask the Minister of State to please take a particular look at what is going on in Cavan-Monaghan.
The general failures in the health service are a grave concern to all Deputies but when children are affected, it is doubly concerning. The fact that the services involved are for children with disabilities is extremely difficult to stomach. The Government continues to fall short on delivering for children with disabilities. Long waiting lists and waiting times seem to be embedded in the system, undermining the whole basis of early intervention policies. We have had promises in budget 2019 and we had promises in 2018 about filling therapy posts and other posts to deal with the huge waiting lists for children with disabilities. Unfortunately, only a fraction of those places has been filled.
My colleague, Deputy Donnelly, has outlined the national situation. The figures nationally are frightening. Deputy Niamh Smyth outlined the position in Cavan-Monaghan. I will focus on Tipperary. In south Tipperary, there are 49 children whose assessments of needs are overdue. In north Tipperary, there are 134 children whose assessments of needs are overdue. When we compare these numbers with similar sized counties, Tipperary is way down the list. My only conclusion is that Tipperary is again being forgotten when it comes to healthcare.
There are 200 families in my county who have children about whom a teacher or GP is concerned and where some disability may be at play. They are expected to languish for up to three years before they even receive a proper diagnosis. The chances of those children reaching their full potential is greatly hindered by that delay. This is the greatest crisis of all. These children are being denied their chance to fulfil their potential and after nearly a decade in power the Government has to be responsible for that.
As I did last evening, I put it to the Government in very clear terms exactly what it is that it neglected to do in last month's budget. Waiting list figures in the area of disability services for children have been unacceptably high for quite some time. There was an opportunity in budget 2020 to begin the process of clearing the waiting lists. There are serious delays for children waiting to access physiotherapy, occupational therapy and psychological treatments. I submitted a parliamentary question in June asking what the nationwide figure is for children waiting for psychological treatment in line with the provisions of the Disability Act 2005. That figure is 7,275 children. It is shocking. It is more shocking that knowing this the Minister of State has brought forward no new initiative and no new impetus was contained in budget 2020 to address this shameful fact. These figures mask the frustration of parents, teachers and others who know well that a professional intervention is needed on behalf of a child who, sadly, now must wait.
We want to see these lists cleared as soon as possible mindful of the damage that can be inflicted on the development of young people who are clearly in need of various assessments and treatments and who are denied an essential early intervention. My colleague, Deputy O'Reilly, tabled a parliamentary question hinting at a possible solution that the national treatment purchase fund could be used to seek treatment outside existing public HSE structures to clear the backlog in psychological assessments. She was given a disappointingly terse response that sums up the Government's attitude to these disgracefully large waiting list figures. The response from the Minister of State, Deputy Jim Daly, was: "As psychological assessments and CAMHs services are not Inpatient/Daycase or Outpatient waiting lists within an Acute hospital setting, they do not meet current NTPF criteria." This seems to be totally at odds with the reply I received to my already mentioned parliamentary question.
In it, the HSE's national director of community operations stated: "The HSE is fully committed to working in partnership with service providers to achieve maximum benefits for children with complex needs, and aims to ensure that resources available are used in the most effective manner possible." The reply also states that the HSE is fully committed, so where is this happening? The facts are that 7,461 children have been waiting more than 52 weeks for their first occupational therapy assessments and 7,444 children are waiting for physiotherapy assessments. We know well that treatment which is delayed, especially in childhood, can have a devastating impact, sometimes with permanent consequences. The delays in the approval and now in the dispensing of Spinraza is seriously limiting the ability of those children with spinal muscular atrophy to reach their full potential. The Minister of State knows the figures. He has supplied them to me and to my colleagues. There are many ways to go about reducing and finally clearing these shameful waiting lists. I hope to hear that the Government is to examine some new mechanism or means of addressing this scandal.
Sinn Féin remains utterly frustrated by the slow rate of progress towards the delivery of the rights contained in the UN Convention on the Rights of Persons with Disabilities. I ask the Minister of State to note this particular point very well. Similarly, we believe that the optional protocol should be ratified without delay. The argument that all legislation must be brought up to speed before it is ratified does not stand up. I have said to the Minister of State, including this week, that we need Report and Final Stages of the Disability (Miscellaneous Provisions) Bill 2016 to be brought before the Dáil. Let me put on the record, and I challenge any contradiction, that Committee Stage has concluded.
I remind the Minister of State that the Dáil passed a Sinn Féin motion in April calling for the establishment of an all-party Dáil committee that would spearhead the putting in place and production of an autism empowerment strategy within a specified timeframe of six months. What steps have been taken to implement that express wish of the Dáil?
The programme for Government suggests a strong commitment to early intervention for children. This not happening in my constituency or in the CHO 7 area. According to the latest figures from the HSE, 6,480 children in CHO 7 area are waiting for speech and language assessments and supports. Dublin South-West has the highest number of children waiting longer for assessments than any other place in the CHO 7 area. In Dublin South-West alone, 97 children have been waiting 18 to 24 months for initial assessments and 145 have been waiting over 24 months. It is the only place in the CHO 7 area where children have been waiting more than 24 months for an initial assessment. It is not happening, despite the matter being raised here with the Taoiseach and various Ministers. There is a complete lack of urgency in their response. They appear to be oblivious of the day to day struggles that families are going through trying get access to these critical support services to which their children have a right. Many families are resorting to the courts in a desperate attempt to get help and assistance for their children. Is this the way forward?
Last month's budget contained no new funding to clear the backlog and the long waiting lists. Chamber House in Tallaght is missing a significant number of key personnel. Existing staff are doing their best but there is a lack key personnel here. This understaffing and long waiting lists has made it a very unattractive place to work. Who wants to go into an area where families and children are stressed and there are long waiting lists that are not being touched? Many of these children are non-verbal and have significant needs. Early intervention is key but its not happening. One expert told me that every day a child is left without these supports represents a backwards step of two days. For a child waiting more than four years for supports, and I know of a child who has been waiting four years and three months, it represents eight years lost in his or her development. Unfortunately, I know of many children in this predicament. This cannot be allowed to continue.
I am deeply concerned about the negative effect these delays are having on the mental health of families and children not getting the supports and services they deserve. This is clearly a system that is broken. It is unacceptable that the development of vulnerable children with profound needs are being held back because they cannot access basic supports and therapy. Let us be honest, it is because they do not have money to go down the private route. Once again, I appeal to the Minister of State to visit the area to see at first hand the challenges faced by parents, children and staff. I have asked his colleague, the Minister to do the same.
There is also a crisis in mental health services. CAMHS are available for all young people and their families who are experiencing mental health difficulties, such as depression, anxiety, suicidal ideation, eating disorders and psychosis. A total of 50 children in Dublin South-West have been waiting up to three months for appointments with CAMHS, 24 have been waiting up to six months and seven have been waiting up nine months. That is a wait of nine months for children who are crying out for help. The HSE has a target that no young person should wait more than three months for a CAMHS appointment. It is clearly breaking this but what is being done? No one, especially a young person in a mental health crisis, should have to wait long months for an appointment. A cry for help from whatever quarter should be heard and responded to as soon as possible.
I received these figures in a reply to a parliamentary question, which also stated there is a vacancy for a principal clinical psychologist in the CAMHS service in Dublin South-West. The staff running CAMHS are working extremely hard in difficult conditions. The long waiting lists and the crisis in mental health services stem from Fine Gael, with the support of the Minister of State. This is despite the fact that a reply to a recent parliamentary question to my party colleague, Teachta Buckley, revealed that the HSE has not spent more than €19 million allocated to it for mental health expenditure in 2019.
The inability of the Government to address the crisis in children and youth mental health services and to tackle the long waiting lists for speech and language supports shows it does not care for vulnerable children and their families. This is the big challenge I am putting to the Minister of State. Come to the area and talk to families and the staff dealing with this crisis. No one should have to wait for four or four and a half years for supports. The families will go to court and what will that do? I hope they will get the supports. This is forcing people down a route they do not want to go to get services. If there is a commitment in the programme for Government, the Government is not following through on it. It is not being delivered on the ground and vulnerable children are being made to suffer.
Three clear components are required for progressing children's disability services, namely, assessment, early intervention and school placement. I will make my comments on these basics, which are considered the norm throughout Europe.
Since 2016, the HSE has been continually promising the roll-out of progressive disability services for children and young people. Obviously, this has not happened. Its goal is to ensure no family will be left without services. It aims to create effective teams working in partnership with parents and education providers to support children in achieving their outcomes. That is what it is all about. This is why I am so glad we are speaking about this today.
The HSE service plans for the years 2016 to 2019, inclusive, state - and, I presume the service plan for 2020 will do so - that the work to reconfigure children's disability services into geographically based children's disability network teams is under way. Every year it is stated that it is under way. I have been in politics for 13 or 14 years and we judge things on our clinics and what issues are becoming bigger. I have never seen as big a crisis in services provision for children who need them as I do now. When I first started in politics there were issues in this area but now my clinics are flooded with them. The Minister of State knows my area very well. During the course of the debate he has received many invitations to visit places and Deputy Crowe invited him to visit his area. The Minister of State knows my area very well because he spends a lot of time down there. I have never seen such a high number of families in distress.
I have never seen so many families in the mid-west and south east, including Tipperary, who cannot get access to services, diagnoses, some form of intervention or school places. It is chronic and disgraceful. I am working with families week in, week out to try to put a pathway in place for them. I am holding their hands while trying to give them some hope. Recently, we started the process of giving families in Nenagh some hope by turning it into an autism-friendly town on the basis of what was done in Clonakilty and by bringing everyone together. Many people turned up and we have a functioning committee. We are going to do it, but the people involved are the same as those who are coming to me with their problems. The situation is disgraceful.
The HSE is consistently failing to conduct the assessments of thousands of children on time. If someone has money, he or she can have an assessment done. That is the bottom line. It creates complications down the line for hard-working families who get their own assessments done, though, given that they must then jump into the public system where some of their assessments are not accepted. Assessments now have to be accredited. I understand that process, but trying to explain it to the families can be difficult.
Children now face the dual hurdles of long waiting lists for initial assessments, which are the gateway to most State-funded therapy, and long queues for overstretched services. In August 2019, 7,615 under 18 year olds were waiting a year or more for an assessment. We have all seen the increases in speech and language therapy waiting lists this year, with 3,118 waiting for more than 12 months or so. Where I come from falls in the mid-west, in that north Tipperary is put with Limerick and Clare. Unfortunately, we suffer from that at times. When there is a lack of personnel, north Tipperary seems to suffer. According to the Government's own statistics, one of the worst areas in the whole country is south Tipperary, which is in the south east.
Basic assessments are not taking place and many children must wait more than two or three years. The knock-on effects on their education are obvious. I heard of one case where a nine year old from Tallaght was assessed as having high-functioning autism but whose parents were subsequently told that they would have to wait 44 months for an appointment. The nine year old would be in secondary school by then. That is the Ireland of 2019. How could any country stand over this? It is a disgrace of the highest degree. There is a ticking time bomb. We have failed in our duty to these children. It would not surprise me if, in the years to come, there are class actions of some kind against the State because of this failure of duty. Please bear that in mind.
One of my pet hates is the problem of school placements. I know a range of schools that provide places for children with autism. The special education needs organisers are left to their own devices and get very little support. They come to my office and say that they have rung every nearby school that provides services, including Kilruane, Puckane, which the Minister of State knows well, and Boher. All of these schools provide fantastic services. Some have been doing so for a very long time. After every school has been rung, the parents find out that they will not get a place. They will not even get a place the next year, although they might the year after that. This is not acceptable. I have raised this matter with the Department of Education and Skills.
There needs to be an holistic approach, as there are whole towns that do not have service provision, school placements and the capacity for these children. The Minister of State has taken direct action in respect of an area of Dublin and somewhere else. Service provision needs to be mapped so that there is timely educational service provision for all of these children. Why should they be discriminated against and not provided with educational opportunities and, unlike everyone else, have to wait?
I wish to discuss the geographical inequalities that I believe exist in the provision of services by the HSE. There is a postcode lottery. I urge that a mapping exercise in respect of service provision be carried out. If someone is in a certain district, he or she can potentially get a decent service. If that person is in other areas, though, he or she cannot. It depends on which division one is in and where there are staff shortages. This is not the way a service should work. There must be a relationship between divisions. We will have to map out the areas. I know them, given that both sides of my county, south and north, are up there in terms of having the greatest issues. If there is one thing I urge the Minister of State to do, it is to examine service provision and waiting lists geographically. Heat map and colour code them, then intervene directly. That is my only request of the Minister of State. It is a reasonable one. If the Government did that, I would come along the road with it and compliment it on finally doing something very productive.
There are major issues with the recruitment and retention of specialists in speech and language therapy, psychiatry and so on. We understand that, but there must be a staff retention strategy. I have raised this matter with the Minister numerous times. When someone leaves a post in any CHO area, the duration of that vacuum is colossal. This impacts on children's lives far beyond what should be the case. It happens because someone is retiring or, as is usual, leaving the country or changing jobs and moving into the private sector. We must have strategies in place to deal with that.
I ask that we adopt a strategy whereby the money follows the children, access to services is equal for all, and service provision and large waiting lists are heat mapped. On top of that, I ask that the Minister of State work with the Department of Education and Skills in an holistic way to ensure educational provision for these children so that they are not left in limbo, which they are being across the country and definitely in Tipperary where there is no such service provision. There needs to be joined-up thinking between the Departments of Health and Education and Skills on this matter.
-----but it is difficult in this debate when one sees the stark reality of what parents have to face. Children who need intervention are being failed, which is the key word I will use. I do not doubt the Minister of State's bona fides. Rather, I am stating the facts, and the facts are that children are being failed on a grand scale. Parents are being forced to bring the Government to court because it is breaking the Disability Act. They have the stress not only of looking after their own children and seeking interventions, but of bringing the Government to court. Some parents are also being failed because they must go to the private sector and spend significant amounts of money. In some cases, they must remortgage their houses just to get interventions for their children. If a child gets early intervention, regardless of what that intervention is, the outcomes can be very beneficial, not only for the child's development, but for his or her parents.
The stark reality is shown in the figures I received in reply to a parliamentary question I tabled a number of weeks ago.
I wish to record the reply on the Dáil record. My parliamentary question related to waiting times for specific interventions in CHO 7, covering parts of Dublin, Wicklow and Kildare. The reply is stark. The waiting time for an assessment of needs is 15 months. Children have to wait 15 months for an assessment of need, not to mention an actual intervention. This is contrary to the provisions of the Disability Act. The waiting time for speech and language therapy for children with special needs is two and a half years, as is the waiting time for psychological services. The waiting time for occupational therapy for children with special needs is 20 months while the waiting time for physiotherapy is 18 months. The Minister of State cannot defend that; he cannot defend a situation where parents with children who need interventions have to wait that long. He knows that the stress that comes with such waiting is incalculable.
The fact that parents and their children are unable to access necessary interventions within a reasonable timeframe represents a complete failure of this Government. This has been going on for the last seven or eight years but it could have been fixed. The welfare of children is paramount, whether we are talking about children in emergency accommodation, in direct provision or those who are disadvantaged by social exclusion and poverty. It is not their fault that they are homeless or that they have to wait two and a half years for an intervention. Parents are the voice for their children and we in this Chamber are the voice for the children who cannot speak up for themselves. If they could speak here, they would say that this Government has failed them miserably.
The crux of the Minister's contribution is that there is nothing to see here, move along, the Government is dealing with everything. He said that next year an autism group will be set up to look at the whole area of ASD right across the board. He referenced disability services and the Disability Act but the reality, as other Deputies have said, is that there are major problems for parents trying to access services for their children. The number of people who have approached me about disability services is phenomenal. All of them are having real difficulty in accessing services that they absolutely need. Deputy Gino Kenny referred to CHO 7, with which I am also very familiar. I have submitted numerous parliamentary questions on disability services in CHO 7 and will read through some of the direct responses I received in order to register the facts and the reality on the ground for people trying to access services in my area.
On 12 October 2018, I received a reply to a parliamentary question concerning a young man. I will not read through the entire response but will quote the following:
There has been very little movement in the School Age Team waiting list for external referrals. Children transitioning from the HSE Early Intervention Team are seen before the children referred by other agencies. The limited human resource capacity to address the waiting lists for intervention coupled with the demand and high deprivation in this area has been widely reported. The service requires a significant increase in resources to meet the needs of the children on these waiting lists.
That response came from the Head of Social Care, Community Healthcare, Dublin South, Kildare and Wicklow, that is, an official within the HSE.
On 22 November 2018, I received a reply to a parliamentary question seeking an update on services. The reply reads as follows:
There are currently 298 children on the Dublin South West School Age Team (SAT) waiting list.
There are a further 18 children awaiting transition from the Early Intervention Team to SAT.
The waiting time for the SAT is 41 months and is growing monthly because the Team does not have capacity to safely take on any additional cases.
There has been no movement in the waiting list in the last 10 months due to:
- the volume of children that are transitioning from the Early Intervention service
- the capacity caseloads of team members
- delays in the filling of vacancies
- maternity leave positions not being backfilled
The following resources are allocated to the School Age Team in Dublin South West which illustrates the current situation.
The reply provides a breakdown of the vacancies and continues thus:
The Team is operating without a dedicated Team Manager...which is an essential resource in managing resources and waiting lists within the Team.
A significant increase in Health and Social Care Professionals is required to adequately meet the demands of children in this area.
The situation is highlighted constantly through letters/reports and risk assessments.
I presume such letters, reports and risk assessments are being sent to the Minister of State. Again, that reply was from the Head of Social Care with the HSE.
On 5 March 2019, I received a reply to a similar question. I was informed that the waiting time for early intervention team intake is currently 14 to 18 months. Also in March of this year, I received a reply to a parliamentary question informing me that there were 333 children on the Dublin South-West school age team waiting list and that the waiting time had grown from 41 to 45 months. Again, the respondent informed me that the waiting list was growing monthly because the team does not have the capacity to take on any additional cases safely. As I said, the waiting time for early intervention was 14 to 18 months on 5 March 2019. By October of this year, the waiting time for the Dublin South-West early intervention team had increased to 22 months from the date of receipt of a completed referral. This is what people are facing every day of the week. The Minister of State comes into this Chamber and talks about what he is going to do. I am not questioning his motivation. I know where he comes from and am aware of his background but this is the reality. What is the Minister of State doing about it? Parents are having to go to court or to private providers in order to have their children assessed. It is an absolute disgrace. The Government should hang its head in shame on this. We are talking here about the most vulnerable people. They need assessments, early intervention and school based supports but it is not happening. This debate is well worth having but it can only be truly worthwhile if the Minister of State is willing to intervene and seriously address what is happening on the ground.
The working title for this debate is "progressing children's disability services". It must be acknowledged that progress has been made in this area, particularly if one thinks of children with a disability 50 years ago or even 20 years ago. Today there is more understanding of disability and more knowledge about the range of disabilities that exist. We know more about what needs to be done, how to do it and why; the issue is getting on with it so that no child with a disability is prevented from achieving his or her potential or from having positive educational and life experiences. Parents and guardians should not have to battle to vindicate the right of a disabled child to an education, health care and public services but sadly, that is the reality because of waiting lists and staff shortages.
I wish to acknowledge the teachers, nurses, social workers, SNAs, learning support staff, key workers, care staff and ancillary staff who are working with children with a disability. The key to services is co-ordination and consistency in recognising and answering the individual's needs. St. Michael's House published its Key Working Children Pilot Model 2018 recently which is all about ensuring that the interactions with services are co-ordinated, consistent and effective. It is also all about the individual's needs. It refers to providing requested information and where to find it, co-ordination of clinical inputs and the provision of emotional support. The pilot is running at the moment and will be evaluated soon. The school-age disability team is concerned with enabling participation in life. The team is comprised of a range of staff who provide a range of different interventions. Indeed, St. Michael's House has incredible staff.
Another service with which I am very familiar, as is the Minister of State, is ChildVision in Drumcondra. It runs individual programmes, provides a range of educational services and access to specialists. There is a special play centre for children with visual impairment, a pet farm and extra-curricular activities like horse riding. The centre also provides skills training, mobility training and support for those who are over 18. We have the models of best practice in place already but access is not widespread. Many parents have to fight every inch of the way for their child with a disability, which is absolutely heartbreaking. It is particularly heartbreaking for parents with a child who has challenging behaviour in terms of their fears around what will happen when that child becomes physically strong.
The way forward is through the interdisciplinary disability network teams and the provision of services based on the child's individual needs, regardless of where the child lives or goes to school.
However, this is taking a very long time. How many children have been left without the services they need, when if that service had been set up promptly it would have made a difference? The Minister of State knows about the need for maximum early intervention. A couple of months ago, the Ombudsman for Children was critical of the HSE and Tusla for failing to do enough to co-ordinate services for children with disabilities who are living in care. There was a lot of criticism that the agencies were not working together in an effective way. Again, I have to acknowledge those foster parents who take on children with a disability and we know about the lack of disability managers in the HSE.
We are talking about implementation and action on the joint protocol for interagency collaboration today. When we come to children with autism, there is no one-size-fits-all approach. A child with autism can cope and do well with support in a mainstream class and I have seen that. A child with autism may need to be in a special ASD class in a mainstream school but there has to be interaction with the non-ASD classes. Then there are times when there is a need for a special school, like ChildVision, which has a multiple disabilities and visual impairment, MDVI, unit. There is one glaring discrepancy in the statistics. We know the number of ASD classes at primary level but we need the same number at second level because those children do not suddenly lose autism when they become teenagers. It is frustrating for the child as they are in ASD classes at primary level and then they are put into mainstream classes at secondary level. It is a disaster for that child, for the other children and for the teacher. No ASD child should be passing his or her nearest second level school. We have far too many instances of schools saying they cannot cater for a child with ASD. I know this from my teaching days because we were a school that was welcoming of children with disabilities and we had schools in the area telling parents to send their children to St. Mary's Secondary School because they did not have the resources. We did not have any extra resources or finance but we had the right attitude of acceptance and respect for difference and we had staff who were innovative and inventive. Primary school teachers understand differentiation and the various methodologies from their training. We do not have the same training for second level teachers so we need more input there when it comes to training. Applied behaviour analysis is a way forward in dealing with challenging behaviour, if that can be brought into teacher training.
Members have mentioned access to psychological assessments in diagnosis. Early intervention cannot be put in place without a comprehensive assessment. The urgent issue is the full implementation of the services for children. It is hard to accept these gaps when we know about the amount of funding that goes into private education. It does not add up.
The Government continues to fall way short in delivering for children with disabilities. I know that as a sibling of someone with a disability. Long waiting lists and long waiting times seem to be embedded in the system we have, and they undermine the policy of early intervention. It is hugely important that we have the opportunity to give children the intervention they need at an early stage in their lives because the reality for children and for families of children with disabilities is that once they get the diagnosis there is a lot for them to deal with in that. As soon as the families begin to grapple with and understand what they are dealing with, they obviously want to get the best possible path forward for their children. The waiting lists we have leave an awful lot to be desired. There have been a lot of strategy announcements but unfortunately, the effects and benefits of those strategies do not seem to be making their way down to those who need them. The 100 extra therapist positions that were promised in 2018 are not in place. Of those that were promised at the end of September 2019, only 22 are in place. We need to have the number of therapists that have been committed to put in place.
The figures we received recently on the overdue assessments of need under the Disability Act 2005 detailed that they rose from 3,568 to 3,768 as of the end of June this year. That is really disgraceful. On the long waiting times for therapies, I want to speak specifically about the situation in Kildare and in Laois-Offaly in terms of speech and language services. The current waiting time for initial assessment is about 33 weeks. As of April 2019, there were 591 children awaiting speech and language services in the Kildare west Wicklow area. In Laois-Offaly, there were 424. Our chronic shortage of HSE speech and language therapists means children are waiting months for an appointment and are losing precious months, weeks and days in their language development. Being able to communicate is a basic human right and being able to develop one's communication skills to the best of one's ability should be a basic human right.
On occupational therapy, there are a total of 910 children in the Kildare west Wicklow region waiting for occupational therapy assessment or intervention. A shocking 80% of children are waiting approximately 30 months to be seen and the remaining 20% are seen within 18 months, depending on staffing resources. In Laois-Offaly, the waiting list is almost 1,600, a frightening number.
On mental health services, there are now 100 children in the Kildare west Wicklow location who have been waiting more than 52 weeks for initial appointments to see a child psychologist. That is frightening. In a reply to a parliamentary question I had at the start of this month, I was advised the psychology service in the HSE was hoping to fill a position for a psychologist in Kildare town by 2020. There is nobody there at this point in time. As a county, Kildare has been hard hit with many families having experienced shortfalls in our mental health services in the past and it us up to make sure these shortfalls are not repeated over and over again.
On physiotherapy, 509 children are waiting in Kildare, 70 of whom are waiting more than 12 months. Physiotherapy is something it is difficult to wait long periods of time for. There are 560 on the waiting list in Laois-Offaly, with 100 of those waiting more than 12 months. It goes without saying that many parents have contacted me in huge frustration with the delays. Huge concerns linger over how long more they will have to wait. One mum told me the other day she has been waiting over four months and she has been told it will be another 18 months before her daughter is seen. She has opted for private care now but she had to borrow the money to do so. Access to services has a big impact on parents because they are getting completely stressed and they feel they are failing their children. That is very difficult. The system is failing vulnerable children and families.
There is plenty more I could say but I am conscious the Minister of State has given me some of his time and I appreciate that. The last point I will make is on the absence of progress in children's disability network teams since 2016. The HSE service plans for the last four years have stated that work to reconfigure the children's disability services into geographically-based children's disability network teams is under way but unfortunately we do not seem to be seeing any progress with this. We have to do better. We have to support our children with disabilities, their families and the support services that support them.
I appreciate that the Minister of State has taken the opportunity on a number of occasions to meet groups and individuals on my request. Nevertheless, there is a large backlog of assessments of need and follow-up treatment in Cavan-Monaghan. Recently, two additional occupational therapy and physiotherapy posts were appointed for Cavan-Monaghan and both therapists have commenced their employment, which I welcome, but we want to examine the background of the large backlog and delays in providing necessary assessments and follow-up treatment for children. It was only at the beginning of November that the assessments of need commenced for Cavan-Monaghan.
Currently, the wait for access to assessments and treatment by the child development team in Cavan-Monaghan, from the date of referral for occupational therapy and physiotherapy, is four years and six months. The figure for speech and language therapy is ten months, while in the case of psychology, treatment is provided only for children and young people in crisis, due to the increasing demands and complexity of the current caseload. That is the up-to-date position as of the end of last month, according to the HSE. It is clear the service is in crisis and additional resources, therapists and clinicians are needed to provide even a modest level of service to children and families in desperate need of securing necessary supports for their children.
We in County Cavan are fortunate to have an Enable Ireland service that covers the Cavan-Monaghan area. Some 275 children access Enable Ireland services in counties Cavan and Monaghan, while a further 162 children wait to be assessed. The figures paint a stark picture of the need for a massive improvement in the delivery of assessments and follow-up treatment, if needed. I have brought the Minister of State to meet groups. He visited the area and we appreciate his personal commitment, but we need promises to be honoured, resources delivered and clinicians put in place because far too many families are desperate due to the lack of services provided for their children. In recent weeks, a number of families have contacted me to say that even though they cannot afford to do so, they are sourcing private services. It is unfair in the first instance that the children who need treatment do not get it, and it is further unfair that families have the additional burden of trying to source private assessments and follow-up treatment because the State fails to deliver it.
There is an urgent need to improve dramatically the services currently available in my constituency and I recognise there are problems elsewhere throughout the country.
I welcome the debate on this important topic. It is only right that I, as the Minister of State with responsibility for disabilities, and the Government, which constantly strives to improve waiting times for access to services for children, outline the measures we are taking. Everyone who has spoken during the debate, irrespective of party affiliation, shares a common desire, namely, to have the best possible services for all children with disabilities, as has been demonstrated during the debate.
Timely access to assessments and therapies is an important factor in a child's development. I fully understand that the delays in accessing services are a source of great concern for both children and their families. Every child with additional needs should have access to the necessary supports within a reasonable time to enable him or her to achieve his or her full potential, to maximise his or her independence and to live a rich and fulfilling life.
As I outlined earlier, the HSE has undertaken a number of initiatives to address the excessive waiting times for access to services, including the recruitment of 100 additional therapy posts to be in place by the end of the year, the appointment of the children's disability network managers to head network teams, and the introduction of a standard operating procedure for the assessment of need process. While some areas, including the Cork community healthcare organisation, CHO, area, which was raised earlier, have made great progress on the assessment of need waiting list, other areas have experienced difficulties with staffing, such as in recruiting and retaining certain professions, which I accept. All the CHOs were allocated some of the 100 posts, 65 of which will be in place by the end of November, while the rest will start in December. Cavan-Monaghan, which is in CHO area 1, received 12 of the posts, as did the CHO that covers north County Tipperary.
We accept the points raised in respect of the National Treatment Purchase Fund, NTPF. The HSE already uses private providers to help with the waiting lists.
As for the comments on autism, it spans many areas apart from that of health. The Department is focusing on improving health services for individuals with autism.
Deputy Kelly made a point about progressing disability services. The disability network managers required to head the teams have all been recruited. The process was delayed for a long time due to union negotiations, and a Labour Court recommendation was another blockage in the system. The issue was resolved in recent weeks because the Labour Court determination supported the HSE in its appointment of new network managers, who can now be appointed.
CHO 7, which includes Dublin South-West, was allocated 13 of the 100 posts. It has had problems with recruitment and retention, and while that is not the only reason for the waiting lists, it is certainly part of it.
I have identified the blockages in the system. I take on board Deputies' views on the issue, but in tandem with the initiatives I have outlined, the HSE is committed to using innovative approaches involving public, voluntary and private providers to achieve the targeted reduction in therapy waiting lists. In addition to the recent funding provided for the autism action plan, since 2014, the rolling out of the programme on progressing disability services for children and young people has had a total targeted investment of €14 million and the provision of 275 therapy staff to increase services for children with disabilities. There was also an allocation of €4 million within the 2016 service plan to allow for the recruitment of speech and language therapists to address waiting lists in both primary care services and disability services, and the funding has provided an additional 83 posts. The recruitment of 40 new posts in occupational therapy was commenced by the HSE last year, and the HSE is reviewing options for the allocation of the posts in the various the CHO areas. The HSE experiences continual difficulties in both the recruitment and retention of some therapy grades and in some geographical areas.
I reiterate that in addition to being properly resourced, services have to be properly organised to be accessible to all children and young people, an important process that is under way. In budget 2020, as we know, the service plan to be announced within the next couple of weeks will exceed €2 billion in social care spending on disability services, despite the budget taking into account the possibility of a no-deal Brexit. The money is being invested and the line on the graph is rising, but we have much to do and I accept many of the arguments made during the debate about therapy services, which need to be developed.