Ms Aisling Byrne:

DCA Warriors provide support and assistance to more than 33,000 parents who have children with special needs and-or serious illness. I will address some of the main concerns that are raised by our members on a daily basis. The first issue relates to the assessment of children under the Disability Act 2005. It is difficult to overstate the importance of this assessment for parents. It identifies the needs of the child and sets out what services are required to address those needs. The assessment must be carried out without regard to the cost of or the capacity to provide any service identified in the assessment to meet the needs of the child. It sets out the gold standard of service requirements. This allows a family to identify and plan for the needs of the child.

The Disability Act 2005 has placed a legal requirement on the HSE to complete assessment reports within a strict timeframe, without any regard to resources. Put simply, the HSE is not entitled to say that it does not have the necessary resources to complete reports within the six-month time limit. It is unclear, therefore, why the HSE sees the six-month mandatory time

limit as an aspirational timeframe as opposed to a legal obligation. The question of resources does not apply because the Oireachtas has determined that the HSE must complete reports within six months, without any clause in respect of resources in the Act. The assessment of need process is extremely important to parents of children with suspected disabilities. The clear intention behind the legislation is that there should be a comprehensive assessment of a child's health and educational needs. Unfortunately, assessment reports are almost never completed within the six-month statutory time limit. The data shows that prior to the introduction of preliminary team assessments, 91% of reports were completed outside this time limit. In 2019, the average time to complete an assessment was 19.8 months.

The HSE stated that the preliminary team assessments, PTAs, were introduced to ensure a consistent approach to the applicants for assessment of need. A consistent approach to assessments is laudable but it was never clear why this consistent approach meant that assessments were going to be reduced to 90 minutes in duration. If the real objective was consistency of assessments, all that would have been required was that clinicians be directed to follow a certain procedure, in keeping with the legislation. In truth, it is clear that the PTA was a useful method of clearing a backlog and taking thousands of children from the assessment of need waiting lists to other waiting lists, such as those relating to children’s disability network teams or the early intervention and school-age disability teams. It is not coincidental that the assessment of need waiting list has statutory time limits while the other waiting lists do not. When DCA Warriors attended a meeting of the Joint Committee on Health in June 2018, we set out our grave concerns about the PTA process and how it was not in the interests of the child to have more screening processes as an assessment of need. The High Court struck down the PTA process last April, but only after thousands of children had been given this form of assessment. The HSE must now redo the assessments carried out under PTA. It is clear that most children unlucky enough to be assessed under PTA system have yet to receive proper assessment.

It is apparent from feedback we receive from parents that when they contact the HSE for advice on the assessment of need process they are being advised by HSE staff that they do not need to apply for assessments of need and that they will receive everything they need from children’s disability network teams. This is a worrying development. An assessment of

need report provides a family with a gold standard statutory report that is enforceable in the courts if necessary. Further, it guarantees a family that they will receive a service statement that mustbe reviewed on an annual basis. No other report provides such rights to the child. To direct parents away from an assessment of need report is in the interests of the HSE; it is not in the interests the child.

Health and education needs are inextricably linked for children with disabilities. This is clearly reflected in the Disability Act 2005, which requires a statement of the health and education needs. However, it is the experience of our members that assessment reports never include a report from the National Council for Special Education, NCSE, as required under the Disability Act. It is clear from the Court of Appeal decision in the case of C.M v. HSE from October 2021 that the HSE did not believe the NCSE had any role in the assessment of need reports completed for children. The court held that this was incorrect as a matter of law and that an assessment report should include the assistance from the NCSE, where appropriate. The question arises, what happens to the thousands of children who had reports completed without any educational input included in them? The HSE as been on notice for the past 12 months that these reports are defective and unlawful. It is my understanding that the HSE has not contacted any parent who had a defective report provided to them on the basis it did not include a statement of the educational needs.

Dr. Rita Honan, a clinical psychologist, has stated in expert evidence to the High Court that diagnosis is the gateway to treatment and the subsequent reduction of symptoms and increased cognitive and adaptive functioning for the majority of children on the autism spectrum. Every day this is delayed leads to missed learning opportunities. While this evidence was not contradicted at the time, it appears that the HSE does not now accept a diagnosis is needed for treatment or services. This ignores the fact that a diagnosis is generally a requirement in the context of special school placements.

It is nearly impossible to advise our members regarding the provision of services for their children because the system is so opaque. If a child is on a children's disability network team list, it is not clear when they will receive speech and language therapy or occupational therapy or get access to a psychologist. Even if a date is provided, it is not clear what level of service will be provided, that is, will they receive a block of sessions and, if so, how many? What happens after they receive a block of therapy? How long will they have to wait until the next block of services?

DCA Warriors often hear complaints from clinicians that they spend too much time assessing children and not enough time providing services. Respectfully, this misses the point. The children who apply for assessments need them. Those assessments need to be done properly. After children's needs are identified, they need to be given appropriate services in a timely manner. Assessments of need and the provision of timely services are not mutually exclusive.

It is important to note that the HSE has the necessary resources to meet all of its obligations under the Disability Act 2005 and to provide the necessary services to children with disabilities in a timely manner. Almost €1 of every €3 collected by the State in taxation, approximately €68 billion annually, is spent by the HSE. Put another way, the argument is not one of insufficient resources to discharge the duty but of a preference for using the money for other purposes.

The Oireachtas took the highly unusual step of directing the HSE to allocate resources to complete assessments within six months because it was acutely aware that early intervention was the key to the long-term success of the children who needed the assessments. The HSE knows this too. It has chosen to allocate the necessary resources elsewhere.