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Families fear disability supports will disappear


Over 30 families worried vital services will be lost under new HSE programme

Oisín McGovern

OVER 30 families of children with special needs are afraid they will lose vital support services under the HSE’s new disability programme.
Kathryn Connor, chairperson of Mayo-based disability charity Áirc, has told The Mayo News said that families have received no communication from Western Care or any other agency about the exact nature of the proposed changes.
Ms Connor said that many parents are ‘very worried’ that they will lose hours of occupational therapy and speech and language therapy under the new system.
She added that some services that were impacted by Covid-19 restrictions have yet to fully resume.
“We all got this letter in October or November saying that services are going to change, it’s going to be better for your child, you’re going to have more services, you’re going to have speech regularly – this hasn’t happened at all. Even respite isn’t fully back,” said Ms Connor, who is also the mother of a 14-year-old boy with cerebral palsy, epilepsy and autism.
Under the new Progressing Disability Services for Children and Young People Programme (PDS), disability service provision in Mayo will be allocated across three different Community Healthcare Networks (Mayo North, Mayo South and Mayo West).
Many disability services are currently provided by charities, many of which receive HSE funding.

Defining ‘complex’
A HSE document states that PDS is being introduced to change disability services from being diagnosis based to being needs based, ‘so that all children with a disability or developmental delay have access to the right service based on their need’.
PDS will also see children divided up into groups with ‘complex needs’ and ‘non-complex needs’.
The HSE says that a dedicated Children’s Disability Network Teams ‘will provide for all children with complex need arising from their disability who live in that [Community Healthcare Network] area. Children with non-complex needs will receive services at Primary Care level’.
Ms Connor says that this division is a source of concern for many parents.
“How can you define complex? That’s why parents are getting so worried,” she said.
“This was supposed to be implemented last year. We got letters in September/October the previous year, and nothing has happened. There’s no communication on Western Care’s side, no communication on any side.”
Ms Connor added that difficulties in obtaining child-disability services pre-dated the pandemic, described it as ‘a battle from birth until they are adults’.

Withdrawal of support
ONE mother who contacted The Mayo News said that she was recently informed that her daughter would be losing her support from Western Care within a number of weeks.
Catherine Farrell, whose eight-year-old daughter Neasa has autism, currently receives a number of hours of weekly home respite care.
“Her hours are essentially being taken from her with effect from mid-February or the end of February because she’s being transferred over to this PDS scheme instead and she won’t be getting anything,” Ms Farrell said.
“You can’t just pull someone’s support with two or three weeks’ notice.”
A student in St Attracta’s National School in Charlestown, Neasa does not receive any other forms of support.
“She gets a couple of hours a week where they send a lady out and she does her homework with her and brings her up the park, that kind of thing,” her mother explained.
“There’s certainly no [occupational therapy] or speech and language [therapy] or anything like that. She sees a very occasional speech and language therapist for about ten minutes every couple of months.
“The long shot is that we’ll be losing the only little bit of pittance we had in the first place, which is this home support hours we had for Neasa. There’s over 30 families in this similar situation and it’s happening very soon.”

Knock-on effect
Ms Farrell said her family will be ‘quite badly’ affected by this move, as her son Iarla also has a disability. He has cerebral palsy.
“Not having these few hours upsets us a lot,” she said. “This will have a knock-on effect to our childminder because I don’t know if the childminder would be able to manage the boy with cerebral palsy and the girl with autism. They’ve two very different needs but yet they are both one-on-one needs.
“The team from Western Care would come when the childminder is here to keep the peace and to keep Neasa occupied and busy … pulling [the support] from Neasa is like pulling it from him too.”
Ms Farrell said that she has heard similar concerns from other families of children with disabilities.
She described the transfer of services from Western Care to the HSE under PDS as ‘passing the blame to somebody else’, and she is furious about how she says she and her family have been treated.
“[Western Care] are no longer taking ownership of what they are supposed to be doing when they are out fundraising at Christmas… fundraising for what?
“The next time someone comes knocking on my door with Christmas cards from Western Care I’ll burn them.”
The Mayo News is awaiting a response from Western Care regarding a number of issues regarding staff and management.