Family of boy with spina bifida forced to fundraise and borrow for essential home renovations  

Family of boy with spina bifida forced to fundraise and borrow for essential home renovations  

Chief executive of the Jack & Jill Foundation Carmel Doyle: 'We see young families, with mortgages, struggling to raise the money for essential home renovations; how the income threshold to avail of the grant is extremely low, in turn leaving middle-income families with little or no support.'  Picture Colm Mahady / Fennells 

The parents of a child with spina bifida had to fundraise €50,000 and get a credit union loan of €30,000 to pay for essential renovations to their home, despite being in receipt of the Government’s Housing Adaptation Grant scheme.

The family of five had to move out of their home while works took place to convert a sitting room and kitchen into a bedroom and wet room with a ceiling hoist for Paul*, while also having to borrow money from family as they dealt with the financial stress of adapting their home.

Last week, the Jack & Jill Children’s Foundation, which provides home nursing and respite care for children up to the age of six with severe to profound neurodevelopmental delay, met with officials from the Department of Housing and urged them to urgently adapt the Housing Adaptation Grant scheme to help struggling families.

Their calls come at a time when families around the country are struggling amid the cost-of-living crisis, and is putting particular pressure on families trying to provide support for children with disabilities.

Carmel Doyle, chief executive of the charity, told the Irish Examiner that nurses from the charity “highlighted the stress and costs involved in caring for a child with severe disabilities and how the application and granting of funds should be made much easier and accessible for parent carers into the future, to the benefit of the whole family”.

“We highlighted how our nurses are increasingly witnessing that the housing adaptation scheme does not meet the needs of families and children with significant disabilities,” she said.

“How we see young families, with mortgages, struggling to raise the money for essential home renovations; how the income threshold to avail of the grant is extremely low, in turn leaving middle-income families with little or no support.

And how, with increasing building costs, we see families trying to fundraise, borrow from family and place themselves in further debt to fund necessary home renovation and really increasing stress levels on everyone.” 

In the case of Paul’s family, they were aiming to create a better environment to care for the six-year-old boy, who has full care needs, has severe developmental delay, and is wheelchair dependent. Initially estimated at €115,000, the final cost of the renovations was €135,000.

The one-income family, who are also paying off a mortgage, received €30,000 from the Housing Adaptation Grant. The rest came mostly from fundraising and loans. The result is that Paul has an “amazing space” to mobilise in his wheelchair, something not possible previously, giving him more independence.

Ms Doyle said the family were also reporting an improved quality of life with an appropriate space for them all. She said parents want the scheme to not be means tested or capped, while also being more suitable for children’s needs within the home.

In the meeting with department officials last week, Jack & Jill also requested that mortgage repayments be taken into account when gross household income is being determined, and consideration given to both covering a percentage of the total necessary build and to an interest-free loan scheme for families in this position.

The department is due to finalise a review into the scheme later in the year. A spokesperson said this review was being informed by ongoing engagement with local authorities and stakeholders such as Jack & Jill.

*Names have been changed at the family’s request

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