A couple whose severely disabled daughter can no longer avail of the services at Dawn House have said that they ‘won’t give up’ in the fight to help their loved one.
Ferrybank residents Noel and Kathleen DeHora had been bringing their daughter Leah to the HSE-run respite centre for 24 years until they were told last September that she would be moved elsewhere.
Following months of unresolved discussions since then, the couple decided to take action by arriving at the centre with their daughter on the day she was due to be relocated.
‘We have always kept Leah’s life private and I didn’t want it to come to this,’ said Kathleen. ‘All she needs is to be comfortable, dry and fed and have a bit of interaction. Hopefully with moral support we can do something. People power is the only thing that can change this.’
Over fifteen friends and family members came out to the centre on Monday to support the couple’s plight. Cllr Anthony Kelly, who was a neighbour of the DeHoras in the past, was one of the people who met them outside Dawn House.
‘We need to try to resolve this peacefully,’ said Cllr Kelly on Monday morning. ‘When I went into Dawn House, they said that the services are inadequate for Leah. What we need to do is talk about this and try to find a solution.’
In an attempt to resolve the issue, Cllr Kelly arranged to attend a meeting along with four representatives of the HSE and the DeHora family. However, speaking after the discussions yesterday evening, he said that no progress was made.
‘We may have to resort to protesting about this and I am prepared to stand with the family,’ he said. ‘The HSE representatives said that they might seek an injunction if we do protest but they can’t if we stay within the confines of the law.’
Leah, who is a non-resident at Dawn House, suffers from severe epilepsy and scoliosis. She was one of the first service users at Dawn House and according to Kathleen, herself and her husband were very happy with how she was being treated. However, in September 2014, they were informed that Leah’s situation would soon change.
‘I got a phone call from the HSE asking Noel and myself to come to Ely House. When I went in, there were a number of representatives of the HSE in the boardroom. They told me that they intended to move Leah and that HIQA were behind the decision due to funding cuts,’ explained Kathleen. ‘My whole world fell apart that day.’
Noel and Kathleen were invited to a second meeting but were later devastated when the possibility of a bed for Leah in the Wexford area was ruled out.
Leah was offered a place at the Millbrook facility in Enniscorthy, which would require her to be collected from her home in Ferrybank each day at 9 a.m. She was due to begin attending the centre on Monday. However, according to Noel, this is not a feasible solution.
‘It wouldn’t be good for her at all,’ he said. ‘We even got a letter from her neurologist who said that moving her wouldn’t be good for her epilepsy. He said that it would be detrimental to her health.’
Cllr Kelly said that he brought up the neurologist’s concerns during Monday’s meeting, but ‘they said that they were complying with a HIQA request and that they have Leah’s best interests at heart,’ he said. ‘The HSE is in ribbons. They don’t seem to me to have the patient’s interests at heart at all.’
Kathleen echoed what her husband said earlier, saying that the idea of taking up a place at Millbrook was an ‘impossibility’.
‘It takes us hours to get her ready and there’s is no way that we can have her ready by 9 a.m.’ she said.
Kathleen said it would require Leah to return home each day at 4 p.m.
‘I suggested at the meeting that I could drive her up myself to Enniscorthy at 11 a.m. every morning if they bring her back to a home such as Dawn House and give her tea. The HSE representatives said that it was not possible,’ she said.
‘I would be fearful of allowing somebody into my home in the evenings. Agency nurses move around to different homes and it can take the nurses nine months to get used to a service user.’
Leah is the only non-resident to avail of the services at Dawn House, something that Kathleen feels has made her an ‘easy target’. She said that earlier this year, she was told that they didn’t want to mix residents and non-residents as it might cause a disturbance.
‘That really was the pits. Leah is one of the quietest children that there is,’ she said. ‘We contacted HIQA about this and they said that they would never single out one person for being a non-resident.’
A member of the DeHora family who wished to remain anonymous said that the ongoing issue was putting great strain on the family.
‘It has deeply affected everyone,’ she said. ‘It’s terrible to think that people in the health service can just do this.’
The family member said that the staff at Dawn House were not to blame as their ‘hands are tied’. Cllr Kelly echoed these sentiments, saying that the staff provide an ‘excellent service.’
‘We aren’t attacking Dawn House at all. We’re attacking the system,’ he said.
Kathleen agreed, expressing her satisfaction with the service that her daughter has received until now.
‘Dawn House have been fantastic. We couldn’t praise them enough,’ she said.
However, as their situation remains unresolved, she said she is worried for Leah’s future.
‘From the beginning, we were given the idea that even if something happened to us, she would be looked after. This doesn’t seem to be the case if they can’t even look after her when we are here to fight for her,’ she said. ‘We don’t have a life and we are happy with that. As long as Leah is healthy and happy, that is all that we want.’
A representative from Dawn House was unable to comment on the matter on Monday. However, the HSE have released a statement on the issue in which they said they are in ongoing communication with the family.
‘At all times, the HSE’s services are acting in the service user’s best interests. In addition, on the grounds of confidentiality of treatment, the HSE will not be publicly discussing any individual’s circumstances. We will do so, however, directly with a service user and/or their families/representatives.
‘Specialist day services in the Wexford area are provided at the state of the art Millbrook facility in Enniscorthy, to and from which the HSE can arrange transport suitable to the needs of service users around the county,’ said the statement.
(First published in the Wexford People newspaper: print edition. Also available online at: www.wexfordpeople.ie/news/couple-vow-to-fight-hse-decision-to-relocate-severely-disabled-daughter-from-dawn-house-34168187.html)