Mother of two boys with life-limiting conditions ‘frustrated’ and ‘stressed’ over housing delay

Two Co Dublin brothers with lifelong and life-limiting conditions remain stuck in unsuitable housing as their mother waits for the local authority to decide on her application for “medical priority” transfer, more than a year after applying.

Jamie Rogerson, whose sons Brody (4) and Jody (2) Doonan were diagnosed with both cystic fibrosis (CF) and Becker’s muscular dystrophy (BDM) in 2022, says she is “stressed” and “depressed” that she cannot get a decision from Dún Laoghaire Rathdown County Council.

Her sons are thought to be the only children in the world with the dual diagnosis, which leaves them at high risk of infection and respiratory difficulties due to the CF. “The muscular dystrophy means their muscles will weaken as they get older. They will end up in wheelchairs and in the end there will be cardiac failure because the heart’s a muscle as well,” says Ms Rogerson. “It was very hard getting that news.”

The boys share a small bedroom in their apartment in Shankill. Black mould is visible on windowsills and laundry has to be dried inside as tenants are not allowed hang clothes outside.

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“They need their own rooms because two people with cystic fibrosis are not meant to be near each other,” says Ms Rogerson. “If one is sick, I would be able to isolate one from the other if they had their own room.

“A trampoline is recommended because it would go towards their physio, to help lung function and break up the mucus in their lungs. Exercise is vital for them. I can bring them to the park but if one is sick we can’t go,” she explains. “So they need a garden.”

Ms Rogerson gave up work as a carer soon after their diagnoses as the volume of hospital appointments made work impossible, she says. The Housing Assistant Payment (HAP) helps with the €1,900 per month rent.

In November 2022 she submitted what is known as a HMD1 application for a transfer to a three-bedroom home with a garden on medical grounds. “It has been a nightmare since,” she says.

Among the supporting documentation were letters from Children’s Health Ireland (CHI) in Tallaght.

The children’s CF respiratory consultant states: “As the condition (CF) progresses it is likely they will require medical equipment as part of the management of care. Separate bedrooms would be preferable for each boy in order to maximise infection control and prevent cross-infection of potential pathogens in terms of basic CF care”.

A letter from the hospital’s medical social worker says: “Mould and damp increase the risk of [the boys] developing recurring respiratory infections.

“Garden space ... would be of benefit for this family as their muscular dystrophy progresses to allow the children complete their CF treatment regimes without Jamie having to bring them to the local park.”

With no response by early 2023 she approached local councillor Melisa Halpin who secured a meeting with housing allocations officials in April who said the family could be waiting five years for an adapted bungalow. “I told them we didn’t need a bungalow. We needed a three-bedroom house and a garden,” said the mother.

In July she was asked to provide an occupational therapist’s report, costing her €400. Through last summer she had no update. In December local TD Richard Boyd Barrett raised the case in the Dáil. The following week the council told Cllr Halpin further clarification was needed from the boys’ BDM consultant.

“But as of now the muscular dystrophy is not the issue,” says Ms Rogerson. “It’s the CF. They need infection control and space to exercise. The council is bypassing the CF and is fixated on this ground-floor accommodation which isn’t necessary.

“It’s so frustrating that they won’t listen to me, their mother. I know my children best. The CF is having a long-term impact on their lungs, especially Jody. He has been on meds three times this past year. If it happens again in the next three or four months he’ll have to go into hospital.”

In her 13 years as a councillor Ms Halpin has “never seen an application for a medical priority be delayed this long”. She says of the introduction of a new application process in April 2022, requiring more detail in the HMD1 form, for medical priority housing: “rather than make it quicker and more streamlined it has led to longer delays”.

A council spokesman would not comment on an individual case, but said: “The medical evidence presented by applicants can vary in quantity and complexity and the length of time required to review applications can vary accordingly.

“Often the applications are incomplete or lack sufficient information for the independent medical adjudicator to make a recommendation. This often leads to a delay in progressing an application. It is often necessary to request further information from the applicant to support their application. Such information may include occupational therapist reports ... or other such relevant evidence. This leads to more than one review of an application being required.”

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