THE mother of a severely disabled Hannahstown teenager has described the lack of a respite place for him and issues problems with vital adaptations to their home as “the perfect storm.”
Lisa Pierce’s son Conleth (18) has cerebral palsy, is blind, can’t walk or talk and is fed via a tube. The family have been fighting since 2014 for an extension to their home which will make it more suitable for his complex needs.
“Conleth turned 18 and that means that whatever respite he had as a child is supposed to be replicated," said Lisa. "Between 14 and 18 you transition to adult services through Looked After Children (LAC) reviews.
“We were asked to source a couple of respite places and got one we were happy with at Trench Park, then nothing happened for a couple of months.
“On 22 December we were told that Trench Park are no longer accepting applications and that the Trust had no alternative respite for him.”
Lisa told us that some respite facilities only take children with learning disabilities and not complex medical needs, such as those Conleth lives with.
“I injured myself lifting him a few years back and the problem is that we can’t put a ground floor extension on because of how close our house is to our neighbours.
“We have been waiting for a double-storey extension which would allow us to install a lift as everything for Conleth is upstairs.
“I can no longer lift him and it is now his twin and his 14-year-old brother who are having to lift him up the stairs,” she said.
Lisa told us that their case has been in the planning process since 2014 but has been hit with a number of delays due to minor changes requested by Conleth’s Occupational Therapist. Now soaring building costs post-Covid are impacting the delivery of the build.
“Our quote that we had post-Covid was covered by the disabled facilities grant, but since the pandemic that has now doubled and the maximum funding that we are told we can access is £70,000, which leaves a significant deficit in the building costs.
“They have categorised this as an enhanced build because they have said we are going to end up with a bigger kitchen, but we cannot do a double-storey extension as we can’t extend his bedroom without extending the kitchen.
“We are left with a house that isn’t fit for purpose and no respite, if this continues then we are not going to be able to care for him,” she continued. “We said this to the OT Manager and she suggested we bring his bed downstairs and take him to the local leisure centre to get showered.”
Lisa said she suggested the installation of a stair lift in the short term but was told that the Trust would consider that to be a hazard.
A spokesperson for the Belfast Trust said: “Belfast Trust appreciates the challenges the Pierce family are facing. An assessment of need has been carried out regarding adaptations at home to meet Conleth’s needs. Following agreement from the family, the recommendations were forwarded to the Housing Executive, as they are responsible for the administration of a Disabled Facilities Grant for adaptations to privately owned properties.
“Belfast Trust has facilitated a meeting between the Pierce family and the Housing Executive to support their application for the funding to carry out works deemed necessary in the Occupational Therapy Assessment.
“Trench Park was assessed as not being suitable for Conleth’s care needs. We are actively progressing discussions around identifying a suitable respite placement for Conleth and will continue to work with his family to ensure he receives the best care.”
Meanwhile, a Housing Executive spokesperson said: “We can confirm we received a referral from the Occupational Therapist team at the Belfast Health Trust for a Disabled Facilities Grant in this case in April 2014.
“In June 2014 we sent a List of Grant-Aided Works and requested plans from the applicant to meet the Occupational Therapist recommendations.
“Since then, then we’ve liaised with the applicant and their Occupational Therapist a number of times requesting the documentation necessary to proceed with the grant-aid application.
“However, the case was cancelled 24 March 2022 because essential documents remained outstanding and plans were not agreed with the applicant’s Occupational Therapist.
“The case was reopened April 2022 and we received an updated recommendation from the Occupational Therapist – plans received were approved by the Occupational Therapist in August 2022.
“Those plans included works that are not eligible to receive grant-aid and, as those works are included, the plans are deemed ‘enhanced’.
“There is no objection to extra works being included, but they will not attract grant-aid and it is the applicant’s responsibility to ensure they arrange payment with their chosen contractor.
“We require a letter from an applicant confirming they are aware the scheme is enhanced and that they are willing to pay any additional costs.
“Despite being outside our remit, we have interceded on a number of occasions to help achieve a satisfactory outcome in this case
“The last meeting was 22 November 2022 involved the Housing Executive, Health Trust and the applicant.”
The spokesperson said that base plans, indicating what works may be eligible for grant-aid, were outlined to the applicant and it was agreed they would contact both the Housing Executive and Health Trust once they had the chance of review.
“To date, we have not heard from the applicant to confirm how they wish to proceed,” they continued.
“We have, and will continue to, work with the Health Trust and the applicant to achieve a positive outcome.
“To progress this case we require information from the applicant, which has been requested, and once received we will be pleased to move forward with the formal approval for grant aid towards the eligible works.”
