Families paying thousands to have children privately assessed due to HSE backlog

Many families are being pushed into poverty to pay for private assessments and services for children with disabilities due to a huge backlog in HSE services, an Oireachtas committee has heard.

Adam Harris, chief executive of autism charity AsIAm, said autistic people are waiting too long to receive timely access to supports such as assessment, speech and language therapy, occupational therapy and psychological supports.

“Too many people are forced to access private services at an enormous personal and family cost, which pushes many people towards poverty,” he said.

Not providing timely services simply defers and increases the cost of support later, at an enormous loss to the individual and society, he said.

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“The State should act as facilitators, not gatekeepers. A radical plan is needed to end excessive waiting lists and ensure appropriate, regulated supports are in place.”

Mr Harris said the system will come under even greater pressure next year, with latest projections indicating there will be demand for more than 20,000 assessments. Yet, he said, the system had struggled to complete about 6,000 assessments last year.

The Oireachtas Joint Committee on Autism was also told on Tuesday that a shortage of professionals for vital therapeutic roles has reached “crisis” levels.

Fianna Fáil TD Joe Flaherty said in the Longford-Westmeath area alone there were more than 700 children waiting for assessments for an average of 2½ years. Some children, he said, were waiting in excess of four years.

Minister of State with responsibility for disability Anne Rabbitte said the outsourcing of assessments, in conjunction with “proper clinical oversight”, was one option she wanted to see examined. She acknowledged the current recruitment model for therapists and other professional roles “isn’t working”, with about 30 per cent of posts in HSE teams vacant.

In addition, many therapists attached to special schools have been diverted to other areas of the health service during the pandemic.

Ms Rabbitte said there have been recent meetings involving the HSE, the Taoiseach and other Government Ministers, with the aim of boosting the supply of therapists.

Among the plans are the introduction of a pay grade for behavioural therapists, including occupational therapists and speech and language therapists, on the critical skills lists for overseas workers, and the recruitment of graduates directly from colleges. In addition, she said there are plans to boost the number of college places in these areas, but she acknowledged this would take time.

Mr Harris said any move to outsource assessments should be time-bound, given the risk of shifting towards a private model in the longer term. He also said there was an urgent need to address the cost of disability, given the expense of private assessments and services.

He referenced a study by NUI Galway which estimated that the extra cost of autism to a family is €28,000 due to the expense of private therapy, lost income and informal care.