Cork disability forum hears of 'children left crushed in wheelchairs they've outgrown'

The parents' forums will be held by Minister Anne Rabbitte in each county, but five have been scheduled for Cork where problems are particularly acute

A Disability Services Forum, Cork North Central, which allows parents and families an opportunity to engage directly with the Minister, at the Vienna Woods Hotel, Glanmire, Co. Cork. Picture: Jim Coughlan

Children with disabilities are being failed and damaged by an inhumane, disorganised health system, parents and school principals have told the Minister for Disabilities.

Minister Anne Rabbitte agreed that disabled children’s human rights are not currently protected at a parents’ forum in Cork, which ran until midnight. The parents' forums will be held by the Minister in each county, but five have been scheduled for Cork where problems are particularly acute.

Ms Rabbitte acknowledged that Cork’s Community Healthcare Organisation was the worst in the country for helping children with disabilities. “What we have at the moment is a system that is not working,” she said.

Harrowing stories about the cruel realities of life as a disabled child in Ireland were heard at the meeting.

Children are left crushed and in pain in wheelchairs for years after they’ve outgrown them due to unnecessary Health Service Executive red tape, parents repeatedly said. 

Skye, a My Canine Companion autism service dog, at the meeting. Picture: Jim Coughlan

Children are also missing early intervention – proven to be crucial in aiding a child’s mental and physical development - due to inexcusably long waiting lists for therapies like physiotherapy and speech and language therapy.

If families have the money, they can pay for care privately and see their children thrive. But if they can’t afford it, they are forced to watch their children suffer and regress.

Families are also being left alone with aggressive, strong teenagers who have caught their mothers by the throat, dragged them from bed at night by the hair and forced their heads through plaster walls in the house.

One man, who asked not to be named but who works in disability services, said it was a miracle that many parents and workers he knew in understaffed services had not been killed by intellectually disabled teenagers.

He called on the Minister to provide funding to families to source the care or life-changing technologies that their children so desperately need privately, instead of waiting for years on HSE lists that often go nowhere.

Although the HSE had been invited to attend the meeting, representatives declined, citing prior engagements, sparking further anger from parents gathered at Cork’s Vienna Woods hotel.

Parents repeatedly called for an end to the Progressing Disability Services (PDS) programme, finalised under Ms Rabbitte’s tenure. They said that this system was regressing disability services in Ireland, robbing schools of vital therapists and not replacing them elsewhere.

Since the PDS was implemented, one primary school principal who spoke at the meeting said that up to 60 therapists – including occupational therapists, speech and language therapists and physiotherapists - had been removed from Cork schools.

Sharon Galvin and Fiona Walsh, both with Parents Cork Advocacy Network (Parents CAN), at the Disability Services Forum in Cork on Wednesday. "They say early intervention is key but it doesn’t exist." Picture: Jim Coughlan

Ms Rabbitte said that the HSE had given her a figure of 14.5 therapists (whole-time equivalents) removed from Cork schools but accepted that this may not be the reality.

Exhausted and over-stretched parents are also now being told to attend training courses so they can carry out therapies on their own children trapped on long waiting lists. Some 34,000 children are on community health waiting lists.

“We love our children, we will do anything for our children, but we can’t do everything for our children. We are not therapists,” Susan Beecher, a mum of two children with disabilities told the emotionally charged meeting.

“Services are non-existent in Cork. They say early intervention is key but it doesn’t exist. There are just waiting lists.

My son is diagnosed four years and he’s yet to receive any services through the service provider. His sister then has a physical disability and she’s not received any services since 2016. There are no services.

Katie Healy Nolan has been campaigning for disability rights since the birth of her daughter Penelope, who has an extremely rare variant of a degenerative condition called pontocerebellar hypoplasia. 

“My child is palliative. She is dying. I’ve done everything to get her what she needs, to give her comfort.

“We raised €25,000 ourselves for Penelope, for a wheelchair.

“Penelope is the love of my life. She’d light up any room. She is a gift to this world. But we’re watching her die.” 

She said that she has to fight for her daughter constantly because she would get no help before her death otherwise. Despite being at risk of sepsis, she has been left for some time on an ‘urgent’ list for a catheter.

One father raised Ireland's disability problems as a human rights issue and asked the Minister when Ireland would ratify the Optional Protocol to the UN Convention on the Rights of Persons with Disabilities. 

This would allow disabled children to take a case to the UNCRPD if they think their rights have been breached after they have been through the Irish court system. Ms Rabbitte replied that she did not believe disabled children’s human rights were being protected in Ireland “by any manner or means”.

Leonne McCarthy, Joanne Hegarty, both parents with children in St Paul's Special School Montenotte and Susan Beecher, parent of children attending the School of the Divine Child, Ballintemple, at the meeting. Picture: Jim Coughlan

She said that she and Minister for Children Roderick O’Gorman were committed to implementing the optional protocol but did not give a timeline to ratify it.

Lack of communication between the departments of Education and Disabilities was also criticised with parents calling for much more input from Minister Josepha Madigan. Many children are facing into September with no school place secured as not enough schools have the resources to care for them.

Ms Rabitte said that her department’s annual budget of €2.1bn was sizeable but that it was not translating to services on the ground.

She said that only 3% of that budget was ringfenced for therapy services while €1.5bn was spent on residential care and €500m was spent on day services.

Fiona Walsh, mum of Zoë, said that Cork is the worst county in Ireland, statistically, for children with disabilities.

Down Syndrome Ireland did a survey, about 68% of kids in Cork have had no therapy yet. These are kids who have lost two years of therapy anyway due to Covid at a vital stage of their development.

“I can’t work because I have to drive my child to school and appointments so it’s impacting us financially and we have to pay if we want services.

“We were living in Australia where there were so many supports. Now, I can see another little girl with Zoe’s condition thriving over there.

“She’s going to achieve more than my daughter ever could. She gets two hours of occupational therapy, one hour of physiotherapy, one hour of speech and language therapy. She gets AUS$4,000 to spend on adaptive communication devices per year and she gets four intensive therapy sessions a year of OT and speech and language therapy or physio. She gets three hours a day for three weeks.

“I have one hour of OT once a month and I do physio twice a month and whatever I can fund privately.”