Ms Linda Whitmarsh:

Good morning. My husband and I are the co-chairpersons from the Cavan-Monaghan parents committee. We commenced our committee five weeks ago due to a level of frustration because we only had singular voice. We felt we needed to get the parents together and to have our voices heard all together, united. I am here today to highlight several issues we have with the disability services. Due to the continuing deterioration of services not only for our children but for all children of the State, we have reached out to some of the strongest and bravest members not only of our county, but of the entire country. We have all continued to fight for our children in silence until now. I am just an ordinary mother with extraordinary children, but I am tired. I feel alone and very scared for their future. My fear is not of their diagnosis but of the lack of support and services that our children are waiting so long for and truly deserve.

I am here as a mother of three boys, two of whom are awaiting services, and I am here on behalf of our committee. Our joint stories are one of heartache as our children grow in front of our eyes towards the possibility of residential care due to dismal staffing levels and poor oversight. Until the ratification of the UN’s optional protocol is achieved, the cry of our children will continue in silence. Our eight-year-old son has cystic fibrosis. He has received two hours of intervention in the last three years, with one hour of speech and language yesterday, just on the back of all this campaigning. He has had no public assessments and had a private assessment in which he was diagnosed with an intellectual disability. He is autistic and nonspeaking. As per my previous submission, he was refused early intervention six times. My son has no continuity of service with multiple therapists just on the phone and has received only two hours of intervention. His regression was unbelievable during the Covid-19 pandemic and we were never offered substantial support other than a phone call. It was extremely stressful on us all as a family. Our other boy is ten years old and he is waiting four years for an assessment for dyspraxia and just recently ASD.

The lack of staffing in the disability services in our area is causing considerable stress on our family and on our children, and they are suffering from this lack of continuity and services.

The stories of our committee carry the same message, with long waiting lists. A recent poll we did of our committee members involving 23 families showed that 18 had been waiting two years or more for services, four had been waiting just one to two years and one had been waiting a year. We have a child who has been waiting seven years for physiotherapy in primary care; a family who are waiting in limbo as their child's needs are deemed not complex enough for a CDNT but too complex for primary care; a five-year-old who has been on a waiting list for half his life, that is, two and a half years; non-speaking children who have been waiting over three years for speech and language therapies and assessments; and a boy with cerebral palsy, ASD and multiple other diagnoses, who has had six sessions split between occupational therapists, OTs, and physiotherapy, not one full individualised session since 2019 and no speech and language therapy.

A National Model of Care for Paediatric Healthcare Services in Ireland, which under chapter 9 shows a guide to workforce planning from 2014, includes progressive disability services. We have checked these figures and their veracity with the services and they agreed that they were correct. As per that document, there should be 37.5 therapists. The current staff in Cavan CDNT comprises 10.5 therapists, one OT, three speech and language therapists, two psychologists, 2.5 physios and two social workers for 630 children. There are 11.5 roles vacant, so the team should be fully manned at 22. As per the HSE policy, however, the number should be 37.5. That is still not sufficient for efficient intervention for a population of 76,092.

The population of our neighbouring county, Monaghan, which we also represent, is 61,386, according to the 2016 census. At present, the number of staff posts in Monaghan is 32 but the CDNT comprises 24 therapists, with eight vacancies. There is a big difference between the population and the staffing level.

One of the main issues our committee faces locally and nationwide is families being sent from their own counties to different counties due to land boundaries close by and to entirely different community hubs. That is an example of the postcode lottery.

As for recruitment, the pay differences and unequal contracts between section 38 and section 39 workers is a huge issue that needs to be addressed. There has been no international recruitment such as in nursing. No allocation allowances or specialist posts have ever been proposed to retain our staff and there have never been any grants or even final year pay for student therapists or an increase in the number of places in third level education for those therapists.

The National Treatment Purchase Fund is not being availed of due to an inability to verify the qualifications of private staff, yet our services use private therapists, even on weekends, when complaints reach boiling point. Our family has spent €15,000 in the past two and a half years on one child and we are not in a position now to do the same as his care needs are quite high, and with the two boys I have to take a step down from work. We just cannot afford the private therapy any more.

CDNTs are supposed to be for complex cases only, yet they have 20 children with non-complex needs there.

There is no local client or parental involvement such as family forums, completed service satisfaction surveys or audits to quantify stakeholder experiences so there are no ratings or patient or parent satisfaction reports. It seems that if we had parent satisfaction reports, they would not show great satisfaction. If it were like the HSE, we would be able to complain to the service and we would be inundated with complaints. Perhaps something would happen then.

There is no recognition of a drop-down qualification such as that of a therapist assistant who could work under the direction of the therapist to bridge the gap for these children who have been waiting so long and to take pressure off the therapists.

We have fought to keep our eight-year-old with cystic fibrosis alive and now we fight to gain independence for him and a good quality of life without us and to promote the speech of a voiceless, precious child. Only now, having fought so hard, is he beginning to get appointments he needed three or four years ago. The passage of time haunts me as we cannot get his lost time back. The only thing necessary for the triumph of complacency is for good people to do nothing. I plead with the committee not to allow this complacency to leave a stain on our children.