Duncan Smith (Dublin Fingal, Labour) | Oireachtas source

I move:

That Dáil Éireann:

recognises that:

— the needs of children should be met by the State through the provision of well-resourced public health and education services, particularly for those with additional needs, and that early intervention is vital, but in far too many cases children are being failed by an under resourced, and over capacity system for assessment of needs and provision of essential supports and therapies once a diagnosis of autism or disability is secured;

— the 2020 Ombudsman for Children's Office report entitled "Unmet Needs: A Report on the Challenges Faced by Children in Ireland Who Require an Assessment of Their Needs" and the 2022 annual report entitled "Falling Behind", highlighted significant delays in the provision of assessment of needs (AON), while the Oireachtas Joint Committee on Children, Equality, Disability, Integration and Youth Report on Assessments of Need for Children, published in February, made 39 recommendations that need to be implemented; and

— the Health Service Executive (HSE) has a "Progressing Disability Services for Children and Young People" project, but enormous capacity constraints remain, and it is not working for far too many families;

notes that:

— assessment delays, multi-year waiting lists for therapies and lack of access to education supports and appropriate school places is profoundly impacting on thousands of children;

— as of March, 10,696 children have been waiting for over 12 months for initial contact with a Children's Disability Network Team (CDNT), an increase of 836 since December, and 17,157 were waiting in total;

— 4,613 children were waiting on an AON under the Disability Act 2005 at the end of 2022, 3,155 of those were waiting more than three months, and these figures are a significant underestimate of the actual number waiting;

— 102,581 children were waiting for a primary care disability intervention in March, and these figures don't include those on CDNT lists, with: — 14,891 children waiting for a psychology appointment;

— 15,305 children waiting for an occupational therapy first-time assessment;

— 8,054 children waiting for a physiotherapy assessment;

— 31,073 children in total waiting for speech and language therapy, with 14,927 awaiting initial assessment, 7,606 awaiting initial therapy, and 8,540 waiting on further therapy;

— 6,517 children waiting for a dietetics appointment;

— 15,985 children waiting for an ophthalmology appointment; and

— 10,756 children waiting for an audiology appointment; — the most recent HSE staff census in October 2022, showed that 34 per cent or 707 posts were vacant across CDNTs, and there is an urgent need for strategic work force planning;

— Individual Family Service Plans often limit access to waiting lists for direct clinical therapeutic supports, despite clear indication of need; and

— without early intervention, diagnosis and swift access to supports, a child is at risk of permanent developmental delays, leaving parents who can afford it with no choice but to resort to private healthcare;

further notes that:

— an important precedent was set by the HSE when it picked up the cost of a local private psychological assessment in 2023 for a specific child who had been waiting many years for re-assessment, therefore, delaying access to appropriate school supports;

— parents and caregivers are deeply frustrated with the lack of accountability and a fit for purpose external or independent complaints system in the HSE;

— 39 per cent of Child and Adolescent Mental Health Services referrals were not accepted in 2022, and in some cases, this is due to behaviours being interpreted as consistent with autism and related diagnoses, with children falling through the gap in services between mental health and disabilities;

— there is in practice no public diagnostic service for autistic adults in Ireland outside of in-patient mental health services, and there is a lack of financial support for autistic-led and parent-led community groups across the country;

— a 2021 study on the economic costs and unmet needs of autistic children found the annual cost per child for families amounted to over €28,000 as a result of paying for private autism services, lost income and informal care;

— the restrictive means test and low rate of Carer's Allowance payment and complex application for Domiciliary Care Allowance is not sufficient to meet the financial needs of those caring for dependents;

— ongoing problems with the provision of special classes and schools, delays in the annual allocation of Special Needs Assistants (SNAs), and the inadequacy of the Summer Programme is a further burden on parents and caregivers; and

— the work of the Oireachtas Joint Committee on Autism in considering matters relating to services and supports for autistic people is vital and the Committee is due to report in June, but this will not address, in the short-term, the current crisis in accessing assessment, therapies and supports;

recalls that:

— there have been multiple motions and bills proposed in the Oireachtas to address these issues, including Labour's National Autism Empowerment Strategy motion in April 2021, and the Autism Bill in June 2022; and

— workers in Section 39 organisations still do not have pay parity or comparable terms and conditions with their colleagues in the HSE; and

calls for:

— the immediate provision of financial relief for parents and caregivers forced to pay for local private assessments and therapies, by allowing the cost to be either reimbursed, or paid for through the National Treatment Purchase Fund or the joint Waiting List Initiative, if waiting more than six months, until such time as backlogs are cleared;

— increased accountability from the HSE in relation to child disability services, and the introduction of a fit for use, external and independent complaints process, along with funding for autistic-led, and parent-led community support groups;

— a full review of Carer's Allowance and other social protection income supports, to ensure it meets the needs of parents, guardians and next of kin caring for relatives, with the introduction of a cost of disability payment in the next budget;

— a workforce planning strategy to address staff shortages in disability services, alongside pay parity for those in Section 39 organisations;

— increased resources for the school Summer Programme, which should be offered in every special school, alongside improvements to the terms and conditions of SNAs; and

— a National Autism Strategy underpinned by legislation, and a review of the Disability Act 2005.

In 2021, the Labour Party brought a motion to the Dáil that was supported across the House calling for an overarching autism strategy. In spring 2022, we brought forward an autism Bill seeking to underpin our strategy that was accepted by the Government, but alas there has been no movement towards progressing our Bill. Today we move this motion on access to autism and disability assessments and supports, which calls for among other things, a clear and efficient pathway for accessing appropriate multidisciplinary assessment of needs. Following our continued work with disability groups, autism groups and many activists, many of whom are in the Public Gallery today, we believe this blockage of assessment of needs can be overcome for many with a clear reimbursement policy by the HSE for those families who cannot get assessments of needs within the three- to six-month timeframe as set out in the Disability Act.

On that note, I thank the Darmody family - Mark and Cara - whom we met as a party two weeks ago and who have been campaigning on behalf of Cara's brothers Neil and John. When the HSE agreed to pay for an assessment for Neil, we believe it set a precedent, and one we understand has been happening on a piecemeal and individual basis throughout the country. In discussion with the Darmodys, we believe through this motion, if accepted by the Government and, more importantly, acted upon, this should be offered to every family that is currently being let down by a public system that is creaking with capacity issues. We hope that at this third time of asking, we will see in the Government's reply at least one tangible commitment that will actually be delivered and will result in perhaps just one less battle for autistic people, people with disabilities and their families to have to fight.

Our motion recognises that the needs of children should be met by the State first through the provision of well-resourced public health and education services, particularly for those with additional needs, and that early intervention is vital. However, in far too many cases, young children are failed by an under-resourced and over-capacity system for assessment of needs and the provision of essential supports and therapies once a diagnosis of autism or disability is secured.

As we know with assessment of needs, there is a window of opportunity through which children must be assessed to get, it is hoped, the supports they need either therapeutically or educationally as they progress through childhood. The 2020 report from the Ombudsman for Children, entitled Unmet Needs: A report on the challenges faced by children in Ireland who require an assessment of their needs, and the 2022 annual report, entitled Falling Behind, highlighted significant delays in the provision of assessment of needs. The Oireachtas Joint Committee on Children, Equality, Disability, Integration and Youth report on assessment of needs for children published in February made 39 recommendations that need to be implemented.

We note that assessment delays, multi-year waiting lists for therapies and lack of access to educational supports and appropriate school places are profoundly affecting thousands of children throughout the country. Yes, there are some areas that perform better than others, but overall too many children and families are being left behind.

As of March, 10,696 children have been waiting more than 12 months for initial contact with a children’s disability network team, CDNT, which is an increase of 836 since December, and 17,157 were waiting in total. A total of 4,613 children were waiting on an assessment of needs under the Disability Act at the end of 2022 and 3,155 were waiting more than three months. We know these figures are a significant underestimate of the actual number waiting. A total of 102,581 children were waiting for primary care disability intervention in March - these figures do not include those on CDNT lists - with 14,891 children waiting for psychology appointment; 15,305 children were waiting for an occupational therapy first-time assessment; 8,054 children were waiting for a physiotherapy assessment; 31,073 children in total were waiting for speech and language therapy with 14,927 awaiting initial assessment, 7,606 awaiting initial therapy, and 8,540 waiting on further therapy; 6,517 children were waiting for a dietetics appointment; just under 16,000 children were waiting for an ophthalmology appointment; and just under 11,000 children were waiting for an audiology appointment.

The most recent HSE staff census in October 2022 showed 34% or 707 posts were vacant across CDNTs, highlighting the urgent need for strategic workforce planning. We know the CDNTs can be operated by the HSE or section 38 or section 39 voluntary organisations. The Labour Party has been leading the campaign in this House supporting the trade union movement to ensure there is pay justice and pay restoration for section 39 organisations to try to stem the outflow of staff from those organisations which are providing vital CDNT services. We know that underpinning a lot of this is the cost-of-living and housing crisis and we have debated that in many debates recently, but we cannot let this debate go without acknowledging that these crises need to be resolved as well and we need to see more from the Government.

Without early intervention, diagnosis and swift access to supports, a child is at risk of permanent developmental delays. I think what we will hear back from the Government is that children do not need assessment of needs to access CDNTs, but we know assessments of needs are vital in terms of accessing early years childcare interventions such as preschool, accessing proper school places, and informing appropriate therapeutic pathways through the health service. We note that an important precedent was set by the HSE when it picked up the cost of a local private psychological assessment in 2023 for Neil Darmody, who had waiting many years for reassessment. This is what we are asking for here. Everyone wants the State to be able to meet the needs of children who require assessments of needs. It is statutorily obliged to start an assessment of needs within three months of an application and to have it finished within six months. We know the State is failing. Until such time as those waiting lists are being met, those targets are being delivered by the State and where capacity has been found, if a family has the ability to get an assessment of needs in the private sector, the HSE should pick up that tab for that family. If families are struggling to find someone to perform that, the HSE should be able to assist them. This is what we are asking for and this is what we want to see in the reply.

The restrictive means test, low rate of carer’s allowance payment and the complex application for domiciliary care allowance cannot continue. This is feeding into the many battles autistic people and families have to face. The domiciliary care allowance is overly complex. Too many people fail the application form. All you need to do is check the DCA Warriors Facebook page where more than 35,000 members share their awful stories of trying to apply for this much-needed payment and having to jump through more hoops than for any other payment in our social protection system or any other service in our public system. Nothing compares to the hoops that have to be jumped through for the domiciliary care allowance. We need to see a full review of the domiciliary care allowance and the carer's allowance.

Regarding the ongoing problems we have with the annual allocation of special needs assistants, SNAs, this is all related. If we had earlier assessment of needs, we would know earlier within communities what the needs are within schools and be able to get the number of SNAs hired and delivered far earlier. Families are going into the summer break not knowing if their children will have an SNA.

We are calling for the immediate provision of financial relief for parents and caregivers forced to pay for local private assessments and therapies by allowing the cost to be either reimbursed or paid for through the National Treatment Purchase Fund or the joint waiting list initiative if waiting more than six months until such time as the backlogs are cleared and are in line with the statutory obligations.

We want increased accountability on the part of the HSE in respect of child disability services and the introduction of a fit for use, external and independent complaints process, along with funding for proper autism-led and parent-led community support groups. There will also be a full review of the domiciliary care allowance. There will be a workforce planning strategy to address staff shortages in disability services within the HSE and specifically within the voluntary sector. Increased resources will be provided for the school summer programme, which will be offered to every special school. A national autism strategy will also be put in place.

I have been asked to raise an issue by disability groups and people in my constituency. The Taoiseach made a comment last week while he was directing a political barb at another party. He used the term "slow learners" as an insult. I do not think this wounded the party it was aimed at as much as it cut people with intellectual disabilities, autistic people and their families to the bone. I have been asked to ask the Taoiseach, who is an experienced politician in his second term as leader of the country, to apologise for using those words and to apologise to the people who have been deeply hurt and wounded by his comment.

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