Parents of children with disabilities describe ‘complete deterioration’ of services in northeast

A Cavan mother of three children with autism has described the “complete deterioration” of services for children with disabilities in the northeast.

Marie Smith, from Kingscourt, a member of newly formed Committee for Children in Need of Disability Services in the Cavan-Monaghan area, was addressing TDs and Senators in Leinster House on Tuesday. Formed five weeks ago, the group represents about 80 families, including over 100 children, some of whom have not had any interventions such as speech and language, occupational therapy or psychology despite waiting several years.

Ms Smith said her son, Calvin (13), was diagnosed with autism in January 2012 when he was three. “Early intervention started and by age five he started to talk. By fourth class, he was integrated into mainstream class with a special needs assistant.

“Today he is in secondary school and in mainstream classes… If it hadn’t been for early intervention he would not be where he is today.”

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Her younger children, however, have been left without services. Zara (6) was diagnosed when she was three, in March 2019. “She is non-verbal and has sensory-processing difficulties and is still in nappies. She hasn’t received any services in over two years.”

Jack (4) was diagnosed with autism in July 2020. “Jack has never received any speech therapy or OT [occupational therapy] services since his diagnosis. He has limited speech, sensory difficulties and is still in nappies.”

Her youngest son, Mason (nine months) is showing signs of having autism. “I have a sick feeling at the pit of my stomach, and feel this immense fear for him. It keeps me awake at night worrying about him and the way services are now makes it so much worse.

“So I stand before you today, and I beg you, please give all the Zaras and Jacks of this country a chance, give them the chance Calvin had all those years ago. Give us hope and them a voice.”

Linda Whitmarsh said her non-verbal son Finn (8), who was diagnosed with autism and a moderate intellectual disability two years ago, has had just two sessions of speech, since she and her husband Ronan complained to a TD.

The “most difficult time of our lives” was during Covid when Finn began smearing his own faeces on himself and his bedroom walls. Convinced he was having sensory issues, Ms Whitmarsh contacted the Health Service Executive for support. They received no intervention.

The couple have spent €15,000 in the past two years to access services privately for Finn.

Their other son, Liam, has been waiting four years for an assessment for dyspraxia.

“I am absolutely physically, emotionally and financially exhausted. I feel isolated and I feel all alone and we feel alone as a family because we’re petrified of the future. Our fear is not about the diagnosis but for the lack of services.”

Catherine Smith said it was “soul-destroying” to try to help one’s child without necessary interventions, which she said were “just not happening”. She read out some of the stories of children whose parents are in the new group, all of who had had no or very limited services over the past several years.