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Dáil Éireann debate -
Tuesday, 8 Mar 2022

Vol. 1019 No. 3

Assessment of Needs for Children with Special Education Requirements: Motion [Private Members]

I move:

That Dáil Éireann:

notes that:

— early intervention is essential to meet the health and educational needs of children with disabilities and additional needs, in order to improve their quality of life from a young age;

— the Disability Act 2005 provides that an Assessment of Need (AON) must be commenced and completed within six months;

— section 8(7) of the Disability Act 2005 requires an AON to state determinations on whether the applicant has a disability, the nature and extent of the disability, the health and educational needs of the applicant, and the services required by the applicant;

— the AON process took an average of 29 clinical hours to complete before the introduction of the Standard Operating Procedure (SOP) which has limited the clinical time to 90 minutes, a reduction of 99.95 per cent in clinical hours for an assessment, which the Irish Human Rights and Equality Commission has said "undermines disability rights";

— while AON waiting lists have been reduced following the introduction of the SOP and Preliminary Team Assessments (PTA), the professional associations representing the therapists and psychologists providing these services has said that the PTA is "not fit for purpose", "the direct opposite of what is intended by the Disability Act, 2005", "dilute professional standards of assessment for vulnerable children in need" and "results in the child being referred onto another waiting list for further assessment. This further assessment does not fall under the Disability Act so there are no statutory obligations for these assessments to be completed in a timely manner";

— section 13 of the Disability Act 2005 mandates the annual reporting and publication of aggregate unmet need for the purposes of identifying gaps in service provision and the resources required to meet need, yet no report has been published since 2009;

— 212 legal actions were taken against the Health Service Executive between 2018 and 2020 in relation to overdue AON, amounting to €701,000 in legal costs for the State; and

— in October 2021, the Minister of State with responsibility for Disability advised the Oireachtas that the children's disability teams were short 400 staff;

further notes that:

— there are long waiting lists for access to occupational therapy, speech and language therapy, and psychology services, including:

— 18,303 children on occupational therapy waiting lists;

— 9,532 children on psychology waiting lists; and

— 8,167 children on speech and language therapy waiting lists; and

— a survey conducted by AsIAm in June 2021, "Every Child Counts: A Report into Autistic Children's Access to Healthcare in Ireland" found that 80 per cent of parents and guardians have had to wait a year or more to receive an autism diagnosis for their child, and 79 per cent said they were not in receipt of any support from either the Early Intervention or School Age-Going Teams;

condemns the fact that:

— in many cases, parents are forced to pay privately for an AON and associated therapies and interventions for their children, in order to access the necessary supports and interventions; and

— the current situation represents a gross and unjustifiable inequity in healthcare and education provision, where children whose parents cannot afford to pay privately, take legal action or who live in areas with long waiting lists, are at a significant disadvantage in accessing the supports which they need and deserve; and

calls on the Government to:

— cease using the SPO to skirt its responsibilities, under the Disability Act 2005, to children in need of support;

— provide appropriate, comprehensive, and clinically ethical AON in line with best practice as outlined by the professional associations representing occupational therapists, speech and language therapists, and psychologists;

— ensure prompt access to a diagnosis where required to access specialist health or education services and further statutory entitlements;

— immediately inform the Dáil of the measures it intends to take to ensure that all children receive a comprehensive AON within the timeframe set down by the Disability Act 2005, and to ensure that these children have real access to the services which they need;

— publish a costed and timebound implementation strategy for the Disability Services Capacity Review which includes targets to meet staffing needs;

— publish a cross-departmental strategic workforce development plan to train, recruit and retain enough health and social care professionals;

— publish all waiting lists for AON, further multidisciplinary assessment following AON, the number of open cases per Children's Disability Network Teams (CDNTs) and the number of children with and without an Individual Family Support Plan, as well as lists for access to services and interventions which are past their due date;

— establish CDNTs in full, including the establishment of governance arrangements with a family forum attached to each CDNT;

— recommence reporting of data and publication of reports pursuant to section 13 of the Disability Act 2005, to provide an evidence base for future planning of service capacity for unmet need;

— immediately ratify the United Nations Optional Protocol to the Convention on the Rights of Persons with Disabilities;

— amend the Disability Act 2005, to provide for a multidisciplinary, needs-based approach to AON as recommended by the Ombudsman for Children's Office in the October 2020 report entitled "Unmet Needs: A report on the challenges faced by children in Ireland who require an assessment of their needs"; and

— require the Disability Appeals Officer to apply for relevant enforcement orders where there are breaches of the Disability Act 2005, to avoid parents having to take lengthy court cases to vindicate the rights of their children.

I am introducing this motion because children's disability services are at crisis point. At least 40,000 children are on waiting lists for assessment or intervention. Families have lost confidence in the new progressing disability model as they witness services worsening rather than improving as time goes by. The rolling out of the progressing disability model promised to ensure more equal access to therapies for all. As one parents said, so far it is equal in the sense that no one is getting anything.

Parents of children with additional needs must fight for everything. They are tired and they are worn out. They are contacting me, my colleagues and no doubt every elected representative in this House saying their children are not receiving the supports they deserve. Their concerns are well founded and confirmed by surveys conducted by AsIAm and Down Syndrome Ireland. Children are entitled to an assessment of need under the Disability Act 2005. This assessment should indicate whether the applicant has a disability, the nature and extent of the disability, the health and educational needs of the applicant and the services required by the applicant. It is a comprehensive assessment. This should be done as a multidisciplinary needs-based approach and completed within six months.

However, this has been replaced by the standard operating procedure with a preliminary team assessment, PTA, being carried out instead. This preliminary assessment does not constitute a proper assessment of needs, AON, it is not fulfilling the statutory right under the Disability Act and it must stop. This is clear given that the average time for the completion of an AON is 29 hours while this PTA takes an average of 90 minutes. I acknowledge that not all children will require a full assessment of need and the preliminary team assessment was meant as a way of identifying those children with the most pressing needs. The intention was that those children would then be admitted onto a team where supports and services would be provided and further assessment carried out if required.

However, the reality is children who undergo the PTA are then just being put onto another list, a hidden and unaccountable list, or simply being told they will receive services in a number of years. The clinicians, such as psychologists, speech and language therapists, occupational therapists, physiotherapists etc., are not comfortable with this procedure. There has been an exodus of clinicians from the children's disability network, CDN, teams due to this as they are not prepared to dilute their professional standards so that the HSE can evade its obligations under the Disability Act.

The professional organisations warned the HSE that clinicians would leave, yet it proceeded with this model anyway. There are staff shortages on all the teams and it is proving very difficult to recruit. Many therapists will not work for the HSE due to poor working conditions and the lack of progression in their careers. Many of the teams are made up of newly qualified therapists. They need guidance and support but that is absent. There seems to be poor management, no targets and no performance indicators. How can the HSE stand over this? How is value for money being measured?

In the meantime, families are forced to fight for everything. They are accessing services privately even though the cost is excessive and some are borrowing to provide support for their children that they should be receiving through the HSE. We are reaching the stage where there is no availability privately either. What can parents do if they are told it will be two years before their child will receive the speech and language therapy he or she needs? What do they do when they are offered five or six sessions of therapy and then nothing, or one session now and another in five months? A proper assessment of need can cost in the region of €1,500 and parents in many cases have no option but to source that privately as a diagnosis is necessary to gain admittance to a special school, a special class or an autism unit. Every parent wants whatever supports are necessary to ensure his or her child can be the best versions of himself or herself.

The State has been brought to court in hundreds of cases because it has not met its obligations under the Disability Act. It is disgraceful that parents are forced to take this action in the first place but it is more incomprehensible that these cases are even defended in court. Instead of taking measures to address the problem, the HSE has spent hundreds of thousands of euro defending the indefensible. It is now trying to shirk its responsibility through the introduction of the preliminary team assessment.

The State is also in breach of the Disability Act. Section 13 of the Act mandates it to produce an annual report and to publish the aggregate unmet need for the purposes of identifying gaps in service provision and the resources to meet need. The last time a report was published was in 2009. It is past time to rectify all the shortcomings of the progressing disability model.

I commend an Teachta Tully on tabling this motion, which gives us an opportunity to discuss this very important issue. The Minister of State would accept that parents of children with disabilities or special needs should not need to battle to get access to an assessment of need or services. In recent days an Teachta Tully and I have met hundreds of parents in person and through Zoom whose experience is one of a constant battle.

It was heartbreaking to hear parent after parent talk about how difficult it is to get an assessment, and even if they get an assessment through the standard operating procedure, they go onto a different waiting list for a multidisciplinary assessment, and very often, even after all that, their children do not get the services they need. Inclusion Ireland will be publishing the results of its survey on Thursday. We have been told the contents of that survey will confirm everything in our motion about how parents feel, the impact it has on their children and their constant battle. It is a battle to get a comprehensive assessment.

The 2005 Act made it very clear that it should be a comprehensive assessment that determines whether the child has a disability, the nature and extent of the disability, and the health and education needs of the child. In many cases this preliminary assessment does not do that. Many parents advise that assessment can take as little as 20 minutes. I have been in GP surgeries and I have been in there longer than 20 minutes. I believe it is a maximum of 90 minutes but it is much less than that. There is no way a child's disability can be determined in that timeframe. That is what advocacy organisations are telling me. AsIAm, Inclusion Ireland, the Disability Federation of Ireland and many more all confirm that is the direct experience of families.

It is a battle to get the assessment on time. This goes back to why parents are forced to take the State to court. Many of us in this House have children. Imagine having a child with a disability or special needs and being forced to take to State the court. How traumatic that would be. The State should be there for families and their children, but they are left with no choice but to take the State to court because the State is not delivering on its obligations. It is absolutely appalling.

Under the 2005 Act the Government is meant to publish at least once a year the aggregate assessment of need and the services that should be provided to children. It should be published once a year and set out the overall staff requirement. I believe that has not happened since 2009. Why is that the case even though we are being told it is happening? I know the Minister of State is talking to her officials, but that is what I have been told. Perhaps she can clarify if that has happened because we cannot get access to those reports.

Over 80% of children who are fortunate enough to have an assessment of need do not get access to any services, as shown in last year's AsIAm survey. Let us wait and see what is in Inclusion Ireland's survey on Thursday. Why should parents have that constant battle? I say this to the officials who are here, to those in the Department who are listening and to politicians in government. For once and for all we must decide we are going to do something about this and then do it.

In the first instance we need to listen to what the Ombudsman for Children said when he pointed to a number of recommendations relating to the 2005 Act. It was very strong regarding the right to an assessment of need. However, I think the standard operating procedure and what some parents quite rightly describe as a short screening is not a proper assessment. However, it is for that preliminary assessment when the six months kicks in and the clock starts ticking, not for those who go on a separate waiting list. That is not fair and rightly it seen as waiting lists within waiting lists - hidden waiting lists. That is not what we should be doing. The 2005 Act needs to be strengthened.

The Education for Persons with Special Educational Needs, EPSEN, Act also needs to be strengthened. We need a new autism strategy underpinned by legislation. We need to communicate to parents in very simple terms exactly what their child is entitled to, how the child will get access to those services, that he or she will get his or her assessment on time and that he or she has a clear service statement or assessment of need which sets out exactly what services the child is entitled to. We then need to set about trying to provide those services as best we can.

What all the advocate organisations and parents have said to me is that the critical solution to this is a proper workforce planning strategy. We need to train more therapists, including speech and language therapists, and child psychologists. We need to recruit and to retain more staff. If we do not do that, we will not address the problems and the waiting lists will get longer.

Ba mhaith liom tréaslú leis na Teachtaí Tully agus Cullinane as an rún seo a chur le chéile.

We parents have to fight tooth and nail to get the basic supports for our children.

[...]

We feel outcast and abandoned.

[...]

We have given up our jobs to care full time for our children with no support.

[...]

I am scared and upset, I don't know what's ahead for my son.

Those are quotes from stories that parents of children with disabilities in Cork have shared with me. Deir na figiúirí go bhfuil 300 duine ag fanacht ar mheasúnú riachtanas i ndeisceart chathair Chorcaí. Tá 131 déanach do staid 2 den phróiseas sin agus tá 102 trí mhí déanach. Tá 204 leanbh ag fanacht le críochnú an phróiseas um measúnú riachtanas. The progressing disability services model is not fit for purpose. Therapists have been removed from special schools without a functioning alternative to accessing these crucial therapies. The children's disability network teams in Cork are very far from being up and running. One such team in north Cork city is so under pressure due to staffing gaps that have never been filled that it has contacted parents encouraging them to complain to the HSE, its own employer, in the hopes of getting some support.

The figures in my constituency are dire. Team 11, for the south east of the city, is missing a psychologist and 2.2 speech and language therapists. West central Cork is missing 2.6 occupational therapists, 1.3 speech and language therapists and 2.2 psychologists. It is the same story in Carrigaline, which is missing one physio, half a speech and language therapist post, more than two occupational therapists and two psychologists. It goes on and on. Family representative groups were meant to be set up under the progressing disability services programme to allow parents to be fully engaged. Not one has been invited to participate. I asked parents in Cork. One local mother was told by an official in the office of the Minister of State, Deputy Butler, that funding would be given in order that therapeutic supports taken from schools would be reinstated in special schools. That is still not happening, and the Minister of State said that on 28 January to that parent.

To put it plainly, this uphill battle, this fight for assessments of need and for reinstatement of crucial therapies, basic things to which these children have a right, cannot continue. They are being denied the ability to meet their potential.

I too commend my colleague Deputy Tully on the work she has done in bringing forward this motion. For a parent with a child who has additional needs, the battle for services and supports is constant. A parent may notice something when the child is only two or three years of age: their balance, their eye contact or their inability to do things children of the same age can do. That is just the start of a very long road. Parents may know very little about the world they are about to enter when seeking an assessment for a child with a view to seeking a diagnosis and ensuring they get the child the help he or she needs. Some parents cobble together the money to go private. Some get into debt just to get that initial assessment and then realise the child has just been moved onto another waiting list. Without that initial assessment, parents will struggle to qualify for the domiciliary care allowance. They will not have enough medical evidence because they cannot get the assessment so they cannot get that really important income support. The child starts school, has not been assessed and requires additional supports and they cannot get an SNA. Everything is a battle, as has been said, from assessments to therapies to day services to respite. It should not be a battle. Why is it that, rather than fix the issue, that is, the delays and the waiting lists, the Government chooses to create something to make it look like it has done something when instead it misleads people and makes the situation worse? As has been said, the Government has created what can only be described as a screening exercise, a pre-assessment to the assessment of needs, to cover up the failure to meet the obligation it should meet, as set out in the Disability Act. It is of no benefit to the child or to his or her parents. The child is no further on after it and instead moves onto another waiting list. It is now common knowledge that you have to go to court in order to get your child the services he or she needs.

In my constituency there are hundreds of children on waiting lists across speech and language therapy, occupational therapy and physiotherapy. One mother in my constituency has a son aged 17. He has autism. She has fought and fought his entire life. She is and always has been his voice. She told me that a neighbour approached her the other day. The neighbour is concerned about her own child. The mother said she felt sick having to tell the young mother what she has to face into and the road she has ahead. There is almost a fear of entering the system in the first place.

The solutions have been brought forward. They are in this motion. I ask the Minister of State to fix the actual issue and to fix it now.

I thank Deputy Tully for bringing forward this proposal. Waiting lists for assessments of need for children across Laois-Offaly have been spiralling out of control for years. In Laois-Offaly, according to figures supplied by the HSE, just 17% of assessments of need applications were completed within the legal timeframe of six months. Overall, in CHO 8, the figure is 16%. These are shockingly poor outcomes.

A constituent of mine contacted me this week and told me, as she did again this morning, about her situation. She is a single parent working full-time. She has a six-year-old girl with a learning disability. She is paying a mortgage and needs a car to travel to work at the other end of the county. She is paying privately for physiotherapy and occupational therapy for her daughter. Her child has been referred for an autism assessment and the mother said she just cannot afford much more and is watching her child suffer. That child will now most likely be forced to go private to get the assessment she needs, which will cost more than €1,000. Many parents are borrowing the money for these assessments. The Minister of State, Deputy Butler, hears of such cases and I hear of them. That is the reality on the ground.

Sinn Féin has committed to trying to put forward proposals to end the constant battle of trying to get children's needs assessed. This evening we are putting forward our firm, constructive proposals. We are calling for a roadmap to be produced which would ensure that all children will receive a comprehensive assessment of need within the timeframes set down in the Disability Act, not a makey-up assessment that just clears a waiting list, after which a further assessment is required, as previous speakers have outlined.

Sinn Féin is also calling for a plan to be established - this is very important - to recruit and develop adequate numbers of health and social care professionals to deliver services in line with best practices. We need that pipeline, and we have amplified that issue here a number of times. That is a concrete proposal we are making. Our 2022 budget proposals include costings for more than 150 additional psychologists, 100 occupational therapists and 250 speech and language therapists. That is the least we can do to ensure that children are not left behind in their early years and that this intervention is made at that really important point in time.

If there is one group that knows what is right for children with special educational requirements, it is their parents. Their love for their children is unconditional and they will fight and lobby to ensure their children get the appropriate supports in a timely manner. In my experience, the parents of children with special educational requirements are the bravest and most determined people I know. They never, ever give up.

Last Friday night I was delighted to attend a fundraiser in support of ASD Ireland at Our Lady of Lourdes National School, in Limerick, a fantastic school. It was organised with the full support of the school by Helen Connolly, mother of Jack, who has autism and attends the school. Her fight was not just for her son but for all the kids in that school. This is so typical of parents of children with special needs. They will do everything and anything for their child but they need the State to step up to the mark as well.

The Government is failing children who have disabilities and additional needs. Parents must battle tooth and nail to access supports for their children. This is abundantly clear when we look at the backlog of assessments. Parents should not have to contact my constituency office or any other constituency office to try to have their children assessed more quickly. Waiting for an assessment is extremely stressful for parents, as is not knowing what the issue is. In the mid-west region the waiting lists are extremely concerning. As of October 2021, 148 children were waiting 12 to 18 months for an initial speech and language assessment, with an incredible 53 people waiting more than 24 months. For even one child to be waiting that long is a scandal. That is two years during which children and their development are damaged. That is not just what I believe; it is what the experts say repeatedly. This is not some sort of anomaly; unfortunately, it seems to be the norm. These are young people in the best years of their lives and their development is being stymied because the State cannot provide them with assessments in a timely manner.

Awareness of children with special educational requirements has come on leaps and bounds in the past decade. Children with additional needs can live full and happy lives, as can their parents, if they are assessed early with the correct structures and supports put in place. The Disability Act 2005 provides that an assessment of need must be commenced and completed within a six-month period.

In too many cases, this timeframe is missed. It is disgraceful that so many families had to take court cases against the State because of its failure to deliver prompt assessment of a child's needs. Parents should never have to do that. Initial assessment should be within the requirement set out in the Disability Act.

Like most things in our health service, we have a two-tier reality when it comes to the provision of assessments. Many parents, both those who can and cannot afford it, opt to pay for private assessment of needs and therapies as the child cannot afford to wait for public appointments. The Government needs to end this debacle and outline what steps it will take to sort this issue.

I thank the Deputies for tabling this motion. I welcome the opportunity to restate the Government's commitment to children with disabilities and their families. There are important challenges we must face if disability services in this country are to meet the hopes and expectations of those at the heart of the service and to enable them optimise their potential as they mature.

It would be disingenuous to ignore the fact there have been difficulties in certain parts of the country in the implementation of the progressing disability services, PDS, programme by the HSE which have resulted in delays for families in accessing much-needed therapies for their children. That position is regrettable and I offer the Government's sincerest apologies to any family experiencing such delays. Such delays are unacceptable. That is why the Government is not opposing the motion. This House stands together on significantly reducing waiting times for children who require therapy supports. Every day delayed for a child is a day lost in his or her development.

There is a strong possibility that each Deputy in this House has been contacted by a family with concerns around delays in getting an assessment of need, speech and language therapy, occupational therapy or other supports to help their child. The sense of frustration and anger which comes across in the letters, emails and phone calls to our offices is heartbreaking, and parents' frustrations are entirely understandable.

My colleague, Deputy Anne Rabbitte, was appointed Minister of State with responsibility for disabilities in July 2020 and I can say without fear of contradiction that she has been relentless in her efforts to champion much-needed improvements in disability services for children. One of the issues the Minister of State sought to remedy immediately was the number of overdue assessments of need for children throughout the country. At the end of June 2020, this backlog, for a number of reasons, had risen to approximately 6,500. By working with the Minister for Health, the Minister of State secured funding to address this issue and clear the existing backlog. When an issue arose concerning existing special schools-based therapy posts transferring off site to children's disability network teams, the Minister of State listened closely to parents' concerns and additional funding was secured and provided to the HSE to allow therapists to stay on site at special schools while allowing network teams to be strengthened through additional posts.

I am sure the Opposition Members will acknowledge that the Minister of State has had significant levels of engagement with them since taking office, briefing them on the services for children in their constituencies while acknowledging problems and seeking solutions. Future solutions are not the exclusive property of Government and the Minister of State is happy to listen to constructive suggestions, regardless of what side of the House they come from. This is a challenge I issue to the Deputies participating in this debate. Criticism of the present position is accepted but constructive engagement on these issues from all quarters is needed so that we can work together in getting an improved service for the children who need these supports.

The implementation of the PDS programme is agreed Government and HSE policy. This policy supports the reconfiguration of children's disability services to provide equitable child- and family-centred services based on need rather than diagnosis and aligns with the UN Convention on the Rights of Persons with Disabilities. The PDS model addresses the previous inequity in service provision, whereby there may have been an excellent service for some children and little or no service for others. This variance may have been linked to diagnosis, age group or geography. Regardless of the reason, it did not represent optimum practice. Children's disability services are changing from diagnosis-based to needs-based so that all children with a disability or developmental delay have access to the right service based on their needs, no matter where they live.

By the end of 2021, all 91 children's disability network teams, CDNTs, were established to provide services and supports for all children with complex needs in their respective geographic areas. These teams comprise health and social care professionals, including nursing, occupational therapy, psychology, physiotherapy, speech and language therapy, social work and others. The teams work closely together in a family-centred model, focusing on the child's and family's priorities. The intention of this model is that every child with complex needs will have access to a team, regardless of the nature of his or her disability, where he or she lives or the school he or she attends. Children and their families will have access to the full range of services and supports of the CDNT according to their individual needs. This includes universal, targeted and specialist supports such as individual therapeutic intervention and access to specialist consultation and assessment when needed.

It must be acknowledged that the implementation of PDS and the subsequent reconfiguration of services has not been without significant problems, the vast majority of which are related to recruitment and retention of the critical staff needed to service the needs of the children. Since 2019, and including 190 posts announced in the recent HSE national service plan 2022, more than 475 development posts have been allocated to children's disability services throughout the country in specialties such as speech and language therapy, occupational therapy, physiotherapy, psychology and dietary. However, there are recruitment challenges in the disability area due to a combination of workforce availability and the significant level of employment opportunities across the wider health sector. These opportunities provide these personnel with options on the areas in which they wish to work. Working with children with complex needs is hugely rewarding but is also very demanding, and recruitment and retention of staff is presenting challenges to the HSE. These challenges affect the capacity of the service being provided. It is obvious that demand for therapeutic supports is outstripping supply and more therapists are required to meet this demand, but this is a recruitment rather than a resources issue, as evidenced by the funding provided to employ almost an additional 500 therapists for disability services since 2019.

I reiterate my challenge to all Deputies in the House. By all means criticise the Government where it is merited but support that criticism with fresh thinking and new ideas as to how this problem can be resolved. No one in the House, irrespective of his or her allegiance, wants to see a child having to wait a year, month or day longer than necessary to receive therapy supports. I assure all that this Government, and particularly my colleague, the Minister of State, will remain focused on providing the best possible services for children and adults with disabilities.

Go raibh maith agaibh. The Minister of State will respond at the end of the debate.

Debate adjourned.
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