The anguish of one family and their lack of supports

By Mary Dennehy

SINEAD Tighe is known to many across the community of Tallaght. She’s a mother, a runner, a campaigner for inclusion and the current Tallaght Person of the Year, among many other things.

Living in Riverview in Tallaght, Sinead has spent recent years trying to break her family’s cycle of isolation, creating a place for them and her son Daniel, who has a rare genetic disease, in the community.

Keith Daniel and Sinead 04

Keith, Daniel and Sinead at the recent Bohernabreena Tractor Run

Daniel, who is non-verbal, is one of around 40 children in Ireland born with a rare genetic disorder called Sotos Syndrome, a disorder that causes a number of issues, including rapid growth during the early years of life.

Sinead is a firm believer in creating inclusive communities that all families can participate in.

However, last week, the mother-of-two has shared an honest video which describes her family’s daily struggle and their impending isolation once again due to a lack of supports and services.

At the age of 11, Daniel is already bigger than his mam and within four years will be taller than his dad Keith.

To continue providing Daniel with the best quality of life at home, his parents and sister Shauna embarked on an energetic fundraising campaign, called Daniel’s Voyage, to raise money to adapt the downstairs of their home, with the community uniting to help raise €100,000.

However, while the family pull together to care for Daniel and provide the happiest and most comfortable life for him at home, the HSE, according to Sinead, does not have their back.

“I’m at home with Daniel all day, and it is getting a lot worse for me,” Sinead told The Echo.

Daniel Tighe and Sinead Tighe 1

Daniel and Sinead photographed at home last year by The Echo

“We have been looking for a behavioural therapist or behavioural analyist for Daniel for the past four years.

“Daniel is hitting me and he constantly comes after me. If he’s not happy with something, he will hit me.

“I analyse Daniel’s behaviour and try my best to understand why he is acting the way he does, I’m breaking down situations all the time.

“Sometimes I find solutions, but as time is going by there are a lot of [his actions] that are unexplained.

“I can’t work it out on my own anymore.”

She added: “Daniel doesn’t like people coming into the house and I’m so anxious when I bring him out [due to his behavioural issues], I’m afraid we will become isolated again.

“It’s not good for anyone, especially a child, to be locked into a house, they need to be part of their community.”

We need to get services right

According to Sinead, the HSE recently told her to use her domiciliary care allowance, which is a monthly payment for children under the age of 16 with severe disability, to get a private behavioural therapist.

“Daniel has a right to the public services of the HSE,” Sinead said.

“We’ve waited four years for this . . . and [that monthly allowance] is used for different things for Daniel.

“Also, how do I know who is the right behavioural therapist for Daniel?”

Issues with respite are also impacting on the family, whose four-day respite in June was cut to two days and their upcoming four days of respite in August cancelled.

Keith Daniel and Sinead 01

Sinead, Keith and Daniel are regularly spotted out running 

“No one is helping us . . . we are alone in this,” Sinead said. 

“There are loads of carers in crisis and residential homes are not an answer [for all families].

“Kids in residential homes have the back-up of behavioural therapists and are happy [in their residential home], why can’t the option be there for kids like Daniel to have the back-up of a behavioural therapist and be happy in his own home?

“This is the first time I’ve spoken about this but I believe we need to get the services right.

“Let’s get the services right even in Tallaght, it’s a huge issue and there’s lots of families in the same boat.”

The HSE 

The Echo put a number of questions to the HSE concerning the provision and availability of behavioural therapists for children with disabilities, who are being cared for in the home.

In a response to The Echo, the HSE said it is currently engaged in a "reconfiguration of existing therapy resources to geographic based terms for children (0-18 years)". 

The HSE said: "PDS [Progressing Disability Services] is changing the way services are provided across the country to make it equitable and consistent for all. 

"The objective of the new model of assessment and intervention is to provide one clear referral pathway for all children (0-18s), irrespective of their disability, where they live or the school they attend."

In relation to Behavioural Support Staff, the HSE said there are only a small number of such posts nationally however, that their role is recognised as "part of the interdisciplinary Children's Network Team under PDS". 

As of January 2015, most recent figures provided by the HSE, the number of staff employed as Behavioural Support Staff nationally ws 8.30 wte (whole time equivalents) - which included 0.42 wte in the CHO7 area (Dublin West, Dublin South city and Dublin South West). 

According to the HSE: "Estimates 2018 include a proposal for a number of posts to support the implementation of PDS including behavioural specialists." 

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