Therapists working in the children’s disability sector are experiencing embarrassment, shame, stress and burnout because of deficiencies in the service which was revamped in 2021, according to a new survey.
Research carried out by advocacy group Fuss (Families Unite for Services and Support) to determine the views of both families and staff in relation to the service, found 80 per cent believed the new model had failed.
Of the 500 respondents, 97 per cent said issues with staff recruitment and retention were posing a threat to the Progressing Disabilty Service, a reconfigured national programme of child disability services introduced by the HSE in December 2021.
The authors of the report who carried out the online survey between April 28th and May 3rd last, said they were distressed to read the volume of clinicians experiencing stress, burnout and fear. “We have spoken to clinicians at their wits end, burdened with unrealistic caseloads and working on skeleton teams” the report noted.
Of the 500 people surveyed on an anonymous basis, 22 per cent were staff working in the service while the majority were parents, guardians or carers.
Several staff who included physiotherapists, occupational therapists, and psychologists expressed frustration at shortcomings in the service.
“I feel we have been sold a total lie,” said one therapist.
“I have been working as a clinician in Ireland and abroad for 15 years and have never encountered such a poor staff to child/young person ratio, and to think this is in a service for children with identified complex needs is outrageous. It is so disheartening as clinicians and CDNTs (community disability network teams) as we keep raising all the risks but seem to be getting no traction”.
Another said: “I feel very stuck as a therapist. I love working within the paediatric disability sector and do not want to leave that line of work for Primary Care, but being a part of a CDNT just feels so disheartening and honestly embarrassing at times”.
One respondent said teams were disintegrating as staff left “due to massive workloads, burnout, stress, lack of interaction with families which is why most clinicians became therapists”. This therapist said parents were understandably frustrated and while it was the HSE’s responsibility “clinicians are the ones getting lambasted but we’re only doing our best in a broken system!!!”
Another clinician who spoke of having built relationships with families over the years said these were “all broken down over PDS” while also reporting “constant stress, burnout, guilt”.
Families too spoke of frustration and of having to fund private therapy because the waiting times are so long.
One family paying €90 per week for private speech and language therapy will also pay €1,500 for a private psychology assessment for their child in June. “I have four children. Costs are high, I feel like we are absolutely killing ourselves to give our child the best chance in life,” said the parent.
Anther reported that after 28 months, they had received a family support plan but the “child has never been seen by anybody”.
Another family said the reconfigured service had resulted in far fewer appointments. “We went from having physio every two weeks to not having physio in over a year”.
One parent report that after waiting a year for a wheelchair, the child had to be remeasured and “still no sign of it”.
The report found that 45 per cent of respondents believe that pay and conditions play a major role in PDS’ inability to retain its current staff and entice more to join the workforce.
Forty per cent said they do not understand the PDS model nor the purpose of reconfiguration which FUSS said highlighted the lack of clear communication between teams and service users.
Only four per cent said the PDS was worth striving for.
Rachel Martin one of the founders of FUSS said the report which has been presented to Ministers Roderic O’Gorman and Anne Rabbitte, made “sad reading”.
A spokeswoman for the Department of Children, Equality and Disability said that before the introduction of the PDS Programme, children in different parts of the country with the same needs could be given varying levels of service, based on geography rather than need.
“The core principle of PDS is to achieve fairer and more equitable access to services for all children with disabilities based on their needs”, she added.
The department said that both the Government and the HSE acknowledged the challenges in meeting the demand for these disability services and “are acutely aware of how these challenges impact on children and their families”.
The spokeswoman said that there had been substantial additional investment in Children’s Disability Services in recent years with funding provided for over 600 Whole Time Equivalent posts.
“Both the Government and the HSE remain committed to the delivery of appropriate services for children with disabilities and will work with families and staff to develop services that meet their needs”, she said.