Children with disabilities are being wilfully neglected by the HSE as their families struggle to cope without vital equipment such as wheelchairs and bathing seats, causing stress, financial strain and burnout, according to the organisers of a National Day of Action to be held on Friday (May 6th).
Rachel Martin of Fuss (Families Unite for Services and Support) said a number of protests nationwide were planned to highlight the "shambles" that was the newly reconfigured children's disability services which parents had expected would mean a root and branch overhaul of services.
But lobby groups point out that an Inclusion Ireland report published in March found more than 50 per cent of families of children with a disability were not in receipt of any service, 85 per cent said they had been waiting over a year for services and almost 20 per cent of the 1,013 families surveyed criticised the quality of services, citing high staff turnover and excessive caseloads as problems.
The report found some families had waited as long as nine years for services with 5 per cent reporting a wait of over six years, 16 per cent waiting four-six years and 27 per cent waiting two-four years. When asked about the type of services their children needed, 88 per cent said occupational therapy, 86 per cent said speech and language therapy, 62 per cent psychology and 55 per cent physiotherapy.
Ms Martin said failure to ratify the optional protocol of the UN Convention on the Rights of Persons with Disabilities (CRPD), which would allow people with disabilities to take a case to the UN over violation of their rights, was very telling.
She also cited the failure to fully enact the Epsen (Education for Persons with Special Educational Needs) Act 2004, 18 years on, as calling into question the State’s commitment to giving a large cohort of people the opportunities to which they are entitled.
Inclusion Ireland has said the failure to fully enact Epsen means children do not have a legal right to an assessment of their education needs and so "are at the whim of policymakers, changes in government, funding priorities and other factors".
‘Disabled by the State’
Senator Tom Clonan whose son Eoghan suffers from a neuromuscular disease said he and thousands like him were being "disabled by the State" which put "cruel and unnecessary obstacles in their path" on a daily basis.
“Services for people who are disabled are getting worse and worse, to the extent that they are practically meaningless or non-existent,” he said.
The HSE started to reconfigure the services for children with disabilities 11 years ago following persistent criticism, with the new regime, Progressing Disability Services for Children & Young People (PDS), culminating in the formation of 91 Children’s Disability Network Teams (CDNTs), the last one finalised in December 2021. Children whose needs are not considered complex are referred to the primary care system.
“The teams are completely and utterly overwhelmed. They don’t have the therapists because they don’t pay them and treat them with respect,” said Mr Clonan. He said that since being elected four weeks ago he had received hundreds of emails from families with heartbreaking stories of how the State had let them down.
Mr Clonan said campaigners needed to be able to mobilise the same kind of energy and dynamism that the LGBTQ community did at the time of the marriage equality referendum when the electorate voted “not out of sympathy but for what they saw as a basic human right”.
In a statement the HSE said it acknowledged the challenges in meeting the demand for children’s disability services and was “acutely conscious” of the impact on children and their families.
“A further 190 posts have been allocated this year to children’s disability services in addition to the 185 posts in 2021 which will support the implementation of family-centred services across all CDNTs,” said a spokeswoman.
The HSE said the additional posts were intended to prioritise intervention for children with complex needs and, in parallel, the recently published Department of Health Waiting List Action Plan provided funding to address community waiting lists for children.
The HSE acknowledged it was experiencing “significant recruitment challenges at this time” and said all options were being reviewed “to address the current vacancies as quickly as possible”.
It said the implementation of the Progressing Disability Services for Children & Young People (PDS) programme, which campaigners say is a shambles, was agreed government and HSE policy. “PDS addresses the previous inequity in service provision whereby there may have been an excellent service for some children and little or no service for others,” it said.
A spokesman for the Department of Education said investment by Government in special education had increased to more than €2 billion per annum to facilitate the underlying reforms required to implement and embed a needs-based approach.
The number of SNAs is projected to have increased by 81 per cent to 19,169 from 2011 to December 31st, 2022 while 14,385 special education teachers are expected to be employed by December 31st, 2022, representing an increase of 48 per cent since 2011.
“Given the increased investment and the associated reforms, it is appropriate that a review of the Epsen Act should now take place,” said the Department of Education spokesman.
The Department of Children, Equality, Disability, Integration and Youth said the Government was committed to ratification of the optional protocol of the UN Convention on the Rights of Persons with Disabilities at the earliest possible date.
The department has begun work to examine the “full requirements for ratification and a detailed review will be conducted to ensure Ireland’s legislative provisions and redress mechanisms are sufficient to meet the obligations that will arise once Ireland ratifies the Optional Protocol”, the department said.