Two years and waiting for disability service complaint

Families fume at short notice on disability meeting

A complaint submitted through established channels by a local family over their children's access to urgent disability supports has taken more than two years to get processed, and is still not yet concluded.

Only last week did the mum of three Linda Whitmarsh receive a response from Enable Ireland, on to which her March 2022 complaint was forwarded by the HSE in January 2023.

The latest update acknowledges receipt of her grievance, and notified the Shercock woman who would be handling the matter going forward.

“It shows me the system is totally and utterly broken,” Linda Whitmarsh told the Celt, reiterating the sentiment contained within the letter she first sent to yoursay@hse.ie 26 and a half months previous.

Linda's initial letter to the HSE's complaints and feedback service was referred to two separate Community Healthcare Organisation (CHO) areas and Your Service Your Say, and was assigned a dedicated complaints officer before being forwarded onto Enable Ireland, where it went without any apparent action/progress for over a year.

The complaint outlined how Linda's now 10-year-old son Finn, who also has Cystic Fibrosis, had at the time not received Speech and Language Therapy. Finn was diagnosed with autism and a suspected intellectual disability off the back of being privately assessed. He was assessed by the Children's Disability Network Team (CDNT) at home for the first time in September 2020, but thus far has received little by way of therapeutic intervention other than a single session of Speech & Language Therapy (four hours) and Occupational Therapy.

She also cited in the same letter her concerns over the access to services for Finn's older brother Liam (12). He was seen by S&L therapists in December 2021 and was then queried with ASD.

The latest response from Enable Ireland came with its Complaints Policy attached, which outlines the target date for resolution of complaints as 30 working days.

Where the 30 day timeframe cannot be met despite every best effort, the Complaints Officer must endeavour to conclude the investigation within a period of six months from receipt of the complaint. In such cases the complainant must be provided with an update every 20 working days.

“Enable Ireland does not comment publicly regarding individual service users and families,” said the spokesperson in direct response to a query from the Celt on the delay.

The Whitmarshes are equally aggrieved that they, and other local families, only received a single week's notice ahead of the Family Forum meeting, where the state of the service is discussed and any updates on improvements provided.

Latest figures show the Cavan Children’s Disability Network Team operated by Enable Ireland is currently operating with a staff vacancy rate of 58%.

Enable Ireland says “staffing issues” caused the organisation to only give local families short notice of the meeting, which is scheduled to take place this morning (Wednesday) in Cavan Town.

“We do our best to give families timely notice of Family Forums taking place. Regrettably, in this instance due to staffing issues we were only able to issue the invitation to parents with one week’s notice. We have new administrative staff and a new Children’s Disability Services manager recently appointed to the team and will endeavour to provide advance notice to families for future family forums as we have done previously.”

The provider meanwhile stated that it “does not comment publicly” regarding individual cases when asked why a complaint submitted through established channels by one family took more than two years before being properly processed.

“It's extraordinary,” says dad Ronan. “We made an official complaint, not effing and blinding someone down the phone, but an official complaint down proper channels and only now have we gotten a response. How can that be? Not only does the Enable Ireland Complaint's Policy state that complaints need to be handled in a timely manner but it even has a flow chart as well. If it takes more than two years for a single complaint to be handled correctly, what faith are we suppose to have that the service is there to meet the needs of our children. It's not, nor has it been.”

He describes the delay experienced by his wife and family as “pathetic”.

"It seems to me that they don't care. In any industry, never mind one that's there to look after vulnerable children, if it can't handle a single complaint it can begin to act as if everything is fine, because no one is telling them it's not.”

Wife Linda agrees. “I know families of children waiting over a year, even two years, for an Assessment of Needs. That's an issue that's still going on, that's been raised with the minister [Anne Rabbitte], the HSE and Enable Ireland. Nothing seems to be changing."

The Whitmarshes estimate they've spent upwards of €15,000 on accessing private therapy for their sons. They know others aren't so lucky. Finn is now pre-verbal, but has still not been seen by a HSE/Enable Ireland physio or psychologist, despite a request pencilled in on his case notes more than 24 months ago.

Liam has had OT and physio “lately” but still hasn't been seen by psychology.

“There is no communication. We've asked time and time again, but Enable Ireland just seems to do its own thing.”

With respect to Wednesday's meeting it's too short notice for Linda.

“For any family with a child with additional needs you really need to be able to plan ahead. It's not good enough.”