'He’s been let down:' Mum speaks out about gaps in support for her son with Down syndrome

Charlotte and Kevin Hanley with young Caoimhín, Diarmuid, Gearoid, and Daithi at their home near Ballingarry, Co Limerick. Picture: Eamon Ward

“I love the bones of him” is how Charlotte Hanley sums up her relationship with son Daithi — but what she does not love is the system which is meant to support him.

Daithi, 6, is in junior infants and has Down syndrome.

“He’s the light of my life,” his mother said. “I would not change my child ever, nothing. But I would change so much about the support systems. He’s been let down. He has so much potential and has so much to give.” 

She is speaking out to highlight gaps in therapy services for their Limerick family and to call for improved government supports.

They initially received help from a HSE service in Charleville but were switched to one of the then-new Children’s Disability Network Teams (CDNT).

“We would have had a great service up until he was about a year old,” the mother of four said.

“We were getting a monthly home visit from a speech therapist, a physiotherapist and a nurse. It was fantastic."

However the move to a CDNT was "a disaster" from the start, she feels. 

He had an initial assessment and a therapist visited his pre-school and school once each.

“But for speech that’s his entire allocation in the last 3.5 years. He’s never had a one-to-one therapy session with a speech therapist,” she said.

The family pay instead for private speech therapy. This is subsidised by Down Syndrome Limerick coming in at €35 per session. 

She also fundraises and volunteers with them.

“If the government is not providing the service, you would wonder why they are not paying (charities) to provide the service. That would be a solution in one way,” she said.

For now however, she said: “It feels like it’s parents’ responsibility and it feels like there is no place to go to say ‘I need help’."

She praised his school for their support. Daithi’s classmates have been learning the sign language, Lamh, which he uses.

Ms Hanley is keen to stress her frustrations are about national funding, not CDNT staff.

In Cork many families whose children have autism face similar obstacles according to Karen O’ Mahony, CEO with the Rainbow Club Cork.

“The days of us getting individual therapies are probably well gone for the foreseeable future,” she said.

Unless you are going private, I can’t imagine that it’s going to be something that is going to be brought back in anytime soon if we don’t have enough therapists.

She is aware Cork teams are “struggling massively” to recruit. However she welcomed Government initiatives providing extra training places. 

Data provided to the Labour Party on CDNT teams in Cork city shows shortages of social workers among other gaps.

“For new families coming in, it is very scary and I think the biggest issue is there is very little information for them,” Ms O Mahony said.

In the meantime, she urged parents to take up offers of courses from the HSE if they can. Her family received “invaluable” information from similar courses, she said. 

Rebecca O’ Riordan, co-founder of FUSS Ireland, called for better understanding from politicians. 

“There are over 900 children a month pouring into CDNTs nationally,” she said.

Every SLT [speech and language therapist] OT [occupational therapist] and psychologist is expected to be an expert in every presentation of every disability. They are expected to manage caseloads for which absolutely no scoping data has been gathered. 

The HSE has commissioned a review of the CDNT system nationally by the National Disability Authority. It is expected to report by the end of the year.

The HSE Midwest health region said there are five CDNTs across Limerick. They had 3,492 children allocated to them with 905 on a waiting list in January. 

During that month alone 1,440 children or parents had therapy or other appointments. The teams are funded for the equivalent of 118.39 staff but are short by over 12 roles. 

HSE South West head of disability services Angela O’ Neill said there are “significant shortages” of healthcare staff globally which is affecting the HSE. 

The West Cork team covering around the Beara Peninsula is funded for 27.40 full-time roles but has 22.66.

The South Kerry CDNT is funded for the equivalent of 31.26 staff but has 26.26 and West Kerry has 15.45 when they could have 19.25.

One Dublin team has 1,561 children allocated to it. In the last year it gave “individual input to 558 children and young people and group input for 152” as well as other services. 
Despite this, it still has 1,000 children waiting for a family service plan information, released to Sinn Féin by the disability service for Dublin South, Kildare and West Wicklow Community Healthcare shows. 

Data released under the Freedom of Information Act shows pressure on services across Tipperary and Waterford. There are 12 CDNTs now under the HSE Dublin and South East health region.

A spokesman added funding covers equivalent of 225.72 full-time roles but up to this week only 141.32 were filled.