Patrick Costello (Dublin South Central, Green Party)
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The Minister of State knows well the struggle experienced by many parents of children with disabilities in regard to assessment of need. We have spent a long time in the Joint Committee on Children, Equality, Disability, Integration and Youth and in the Chamber debating what the Ombudsman for Children referred to as the "unmet needs" of these families. They are dealing with significant pain, misery, grief and loss, and it is very difficult for them.

I acknowledge the work the Minister of State is doing. She has been touring the country, listening to these families at first hand and doing her best to engage with the HSE, even if it does not always engage with her. Nevertheless, we have to do more and highlight these issues. When families struggle with the assessment of need process, they are driven to private psychologists and private assessment services, which are obscenely expensive for families, not least vulnerable families who are already struggling with the additional cost of supporting a child with a disability and the impact that has on family income and their ability to work.

The challenge does not just relate to the cost; many of these private assessments are, to be blunt, substandard. They are just not good enough. Many people have paid good money for a private assessment and been told it is invalid and will not be accepted by the HSE. They may have been told the person carrying out the assessment does not have the required qualifications, has not made an accurate diagnosis or has not done the assessment in the right way. This is a struggle especially where families have waited for a long time, scrimped and saved and then sought an assessor in the private market.

In my constituency in particular, numerous families have reached out to me to complain about one person, Caroline Goldsmith, is conducting assessments that are just not suitable-----

Catherine Connolly (Galway West, Independent)
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I remind the Deputy about the rules relating to naming persons in the House. He might wish to reflect on them.

Patrick Costello (Dublin South Central, Green Party)
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If the Leas-Cheann Comhairle had seen the look on these families' faces as they cried in front of me-----

Catherine Connolly (Galway West, Independent)
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I am not taking issue with that-----

Patrick Costello (Dublin South Central, Green Party)
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-----about their vulnerable children not receiving-----

Catherine Connolly (Galway West, Independent)
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I am just reminding the Deputy about procedure regarding naming persons.

Patrick Costello (Dublin South Central, Green Party)
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These families stood in front of me with tears in their eyes as they spoke about how they had tried the best for their children, and how they had saved money they did not have and tried to spend it on getting an assessment and having the needs of their children met, and they did not get it.

We need to fix the assessment of need service. We need to ensure families will get the assessments they need, and on time, in order that they will not be driven into the hands of private providers. We need to ensure any private providers that provide assessments conduct them correctly, and that any assessment that is carried out will open the door to services and get these families the supports they are crying out for, which their children need. This is an emotional topic for me because I listened to the pain these families are suffering, but it is much more difficult for them. We need to address both the assessment of need issue and how we can tackle the issue of private assessments that are just not up to standard.

Anne Rabbitte (Galway East, Fianna Fail)
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I thank the Deputy for raising this issue and giving me the opportunity to respond to it. I am very aware of the case of Caroline Goldsmith, whom he mentioned. On my ministerial visits throughout the country, I was horrified to hear about the experience parents had whereby they had got their diagnoses but were not allowed to use them, given they were not accepted by the HSE and so on.

It is important for me to set out what is in place. I am sure the House will be aware children’s disability services are provided based on the presenting needs of the child rather than his or her diagnosis or the actual type of disability or service required. Services are provided following individual assessment according to the child's individual requirements and support needs. The national policy on access to services for children and young people with disability and developmental delay ensures children will be directed to the appropriate service based on the complexity of their presenting needs rather than their diagnosis. This policy provides a single point of entry signposting parents and referrers to the most appropriate service. That may be primary care for non-complex functional difficulties, or children's disability network teams for complex functional difficulties.

Psychologists are not yet subject to CORU registration, something I was not aware of until recently, but the HSE and its funded service providers ensure all psychologists employed in their services are appropriately qualified. Psychologists' qualifications are validated as part of the recruitment processes. The Psychological Society of Ireland, PSI, recently published professional practice guidelines for the assessment of autism. The HSE has advised it is aware of these guidelines and they will be considered by the HSE in due course. I fully concurred with the society's president when he stated at the launch of the guidelines that autistic children and adolescents deserve the same chances in life as their peers, and that improving the diagnosis process is the first important step on that journey.

I am pleased to inform the Deputy I attended a day-long workshop last Friday that began the process of developing new interim guidelines to support the assessment of need process and guide front-line staff. The workshop was attended by key stakeholders, including senior HSE officials, Department of Health officials and professional body representatives. Children and young people were represented in the form of a number of parents who attended. In the interim, the standard operating procedure as part of the assessment of need process has reverted to the previous model and practitioners will use their clinical judgment in ongoing assessments.

Following the commissioning and publication of the review of the Irish health services for individuals with autism spectrum disorder, the HSE commenced the implementation of a service improvement programme for the autistic community based on its recommendations, and a national autism programme board was established with responsibility for leading the implementation of the review report recommendations. The board comprises senior operational and clinical decision-makers as well as independent professional and academic support. Importantly, the programme board includes representation from persons with lived experience of autism.

In Crumlin, when I listened to parents stand up to describe their experiences, everyone was aghast at the cost.

At the back of the room, there was another woman who was not aware of the fraud she felt had been perpetrated upon her. We had three people in the one room. I went to Dunshaughlin the following week and another woman declared the same thing. I thank the Deputy for using the floor to raise this issue.

Patrick Costello (Dublin South Central, Green Party)
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I welcome the Minister of State's response regarding the need to register psychologists with CORU. As a social worker, I spent a lot of time registering with CORU. I found the process painless. It provides reassurance and support to the families social workers engage with. CORU has said that there is no regulation of psychologists but that it will be coming soon but, as happens in this country, it has been saying that for quite some time. Is this a matter of resources? Do more resources need to be put into CORU to make this happen? Ultimately, the business of private assessment in the area of autism spectrum disorder, ASD, and the field of disability is thriving because of the struggles in the assessment of need process. There is a need to take on the HSE and to address those unmet needs and those failings. That is the ultimate protection as it would ensure a quality State service that is open to all and that does not cost people an arm and a leg they cannot afford. Again, people are doing this because they want the best for their children. At the end of the day, this is about protecting those young people who are in desperate need of assessment and the services that come with it. I thank the Minister of State for her previous fights with the HSE. I ask her to keep fighting because the assessment of need process is still not working. The services that should follow such assessments are not being provided, even to those who have a diagnosis. There is still an absolute lack of services and that needs to be fixed. If these issues can be fixed, vulnerable families can be protected from private providers.

Anne Rabbitte (Galway East, Fianna Fail)
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I again thank the Deputy for his contribution on this issue. If a parent provides reports, whether diagnostic or otherwise, that have been completed by another service, the relevant HSE service will consider those reports. I have used the name Caroline Goldsmith already. It is important to say that if parents have got a diagnosis but have not been able to access services, that is, parents who procured these services because they were not able to access the waiting list, they should contact my office. It is not fair or right for any parent who has spent hard-earned money not to get a fair and accurate assessment as to their child's diagnosis. I certainly do not want to again see the upset I have seen on parents' faces in Crumlin and Ashbourne in the past three weeks. It is only right that I engage with CORU. I am thankful for the support I have received from the HSE in recent days in ensuring a proper pathway is put in place to make sure people are protected. We have put a timeline on this measure. We need to protect families and, most importantly, the young people because the vulnerability that arises from not being able to get a timely assessment of need is driving people to despair. These assessments are needed to ensure access to education and whatever else these children need access to. Nobody seems to want to let you access anything in this country if you do not have a preliminary diagnosis. We all know that healthcare is based on need but other parts of society are based on diagnosis. The HSE and I need to crack that particular nut with the support of all of the Members in here over the coming weeks. There are other ways of doing it. We need to bring in more people and clinicians such as family support workers, behavioural therapists and play therapists. It is not all about just one or two fields.