Children with disabilities are waiting for up to five years for vital services, a joint Oireachtas committee on disability services has heard.
Despite the recommendation for speech and language therapy sessions to be accessed weekly for children with down syndrome, parents are waiting years for a range of therapies leading to regression and falling behind.
The committee heard from various parents representing different factions of Down Syndrome Ireland (DSI) who said they have had to organise private speech and language therapy sessions themselves through fundraising while others rely entirely on the HSE.
Cara Steinmetz, a member of the managing committee of Down Syndrome Cork, said the access to disability services is full of “constant worry, uncertainty, inadequate support and endless struggle”.
Her son Noah was referred from Early Intervention services to community services at age six and was told there would be a wait of three years before he would be seen. Now almost 11, Noah has never had speech therapy through disability or community services.
“65% of respondents to a 2021 DSI survey reported that they had received zero speech and language therapy sessions, 87% had received zero occupational therapy and 70% had received zero physiotherapy in the previous year,” she said.
Ms Steinmetz said she gave up her career to care for Noah and had to learn how to help his speech, as well as meet his physio and occupational therapy needs.
Olivia Flanagan said parents in her area in Carlow are “extra disadvantaged” as they are “completely dependent” on the HSE for services. She said her son Josh has not received speech and language therapy in almost four years, adding “the HSE is not providing services for our children”.
Aileen O’Donovan, who represented The West Cork Down Syndrome Support Group, said her local service provider’s partnership with the HSE in 2013 changed the services for the worse due to the workload of the therapists who are providing for an increased number of children with a complexity of needs.
Concerns were also raised at the number of places available on three undergraduate courses for vital speech and language therapy which is a contributing factor to waiting lists.
With just approximately 90 places available in Ireland, Lucy Moran called for an expansion in that number saying there is no issue with sourcing applicants for the courses, but the limited spaces in combination with a perceived lack of interest in working in the public sector is resulting in regressing wait times.
“A letter sent from Children's Disability Network Team manager dated 12th January 2023, confirmed that there are 23 clinical positions in Carlow, of which only 9 posts are filled. The HSE need a complete overhaul of recruitment and retention of staff,” she said.
Ms Moran said the CDNT is “not fit for purpose”. “We’ve never had an appointment through them, it’s a battle to even find out who your key worker is in CDNT, never mind ask for services,” she said.
Fine Gael Senator Mary Seery-Kearney said it was “concerning” but that she was “not at all surprised”. “It is an absolutely relentless situation fighting for therapy,” she said.
Committee chair Kathleen Funchion said the waiting lists were at “crisis level” and that the solutions are “straight forward” and that there is “a lack of common sense”.