Pauline Tully (Cavan-Monaghan, Sinn Fein) | Oireachtas source

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.

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