A WEXFORD family has been left reeling this week after the HSE denied a woman with severe intellectual and physical disabilities access to the day care which she has attended for over 25 years.
44-year-old Leah DeHora of Ferrybank, who is severely physically and mentally disabled, has attended the Adult Disability Day Services at Dawn House, Belvedere Road, since its inception in 1989.
Yesterday morning (Monday) she attended the facility with her parents Noel and Kathleen and was asked to leave.
The HSE, based on the instruction of the Health Information Quality Authority (HIQA), has advised the family that Dawn House is a residential facility and that it can no longer accommodate day patients. Miss DeHora attends the service from 11a.m. until 5.30p.m. and returns to her parents’ home overnight.
The HSE informed the family in September 2014 that it would be discontinuing the care offered to Miss DeHora at Dawn House and, in lieu, she has been offered a place at Millbrook Day Centre, Enniscorthy.
“It was like my world stopped,” Kathleen DeHora told this newspaper.
A bus arrived at the family home yesterday to collect Miss DeHora and transport her to the Enniscorthy based centre, but the family declined to send their daughter on the bus.
It is claimed that the move to the new facility and the associated longer commute would have a detrimental effect on her condition.
Miss DeHora was diagnosed with Infantile Meningococcal Septicaemia at six months of age. Due to an acquired brain injury from the disease, she has lived her entire life with with severe physical and mental disabilities.
Over the past 25 years, a programme of care has been developed that has helped her to live her life “as comfortably and as happily as she can.” Her parents “cannot stress enough” how grateful and happy they are with the care that their daughter has received at the facility.
Since news of the shock decision was delivered to the family a year ago, they have contested it on the grounds that Miss DeHora is not physically or mentally capable of readjusting to a new environment and a daily round trip of 50km would cause her significant discomfort and distress.
Her mother Kathleen in describing her daughter’s condition said: “She is totally dependent on other people, even for the most menial of tasks. She has spent her life in a wheelchair, she cannot feed herself, she cannot communicate and she needs constant care, 24 hours a day.”
As well as her disabilities, she also suffers from associated epilepsy. She requires a number of anti-epileptic drugs to control her seizures and her condition has improved because of this treatment. It is believed that a proposed move to another facility would be detrimental to her health and to her seizure control.
This thesis is backed up by letters from her consultant neurologist and consultant physician. In a letter the physician stated: “I would fully support her parents’ application to maintain Leah’s service at Dawn House on medical grounds, as a change at this time could be catastrophic for her.”
The family also refutes any suggestion that the move will prove to be a cost-saving measure for the HSE, because in order to facilitate Miss DeHora attending the Enniscorthy based service the HSE propose to provide transport to take Leah on 50 km round trip per day, five days a week and provide two extra staff, a staff nurse and multi task worker, on each of the five days to accompany her.
The family claims that they never had a reason to doubt the continuity of service at Dawn House.
After Kathleen DeHora suffered a temporary illness in 2003, the couple began to consider long-term care plans for their daughter.
They wrote a letter to the management of Dawn House enquiring about full time vacancies. They sought clarification on issues relating to Leah’s future at the facility, including, being cared for on a full time basis and what the facilities position was in regard to that issue.
In reply the Director of Nursing at the time stated that there were no full time vacancies within the service at that point but in developing future accommodation the HSE would ensure that she is included in their plans.
It came as a shock when a decade later the couple were invited to a meeting at Ely House and informed that their daughter was going to be removed from Dawn House entirely and transferred to Millbrook Day Centre.
“We weren’t expecting it. We thought that it was just a meeting to get to know a new staff member in the HSE management. Noel couldn’t make the meeting because he was tied up with work and I didn’t think that there was any issue so I went on my own. But when they told me what they had planned I became hysterical. I couldn’t believe it. It was like my whole world was falling apart,” said Kathleen DeHora.
A follow-up meeting was scheduled shortly after the first meeting took place.
Subsequent to the first meeting the DeHora’s sought legal advice and a note taker accompanied them to the second meeting.
At this meeting an apology was offered to Mrs DeHora for the manner in which the news had been sprung upon her.
They were informed that there was a HSE decision in 2012 to remove Leah from Dawn House, but it was decided to postpone telling them because Mr DeHora was about to have major heart surgery at the time.
They were offered a place for Leah at Summerhill House, Enniscorthy or at Rivendell, a facility in Ferrycarrig, Wexford.
Even though the DeHoras had a preference to keep Leah at Dawn House, they felt it was better a better option to accept the place, at Rivendell than the earlier proposed move to Millbrook due to its proximity to Wexford Town and the family home.
They left the meeting feeling vindicated and satisfied that a solution had been found for their daughter.
A further meeting was arranged a number of weeks afterwards.
During this meeting representatives of the HSE began discussing the proposed move to Millbrook and how it would be facilitated.
When the family realised what was being said they interrupted and reminded the representatives that they had already been offered a bed at Rivendell at the previous meeting.
At this point the HSE representatives denied that such an offer was ever made.
The couple stated they had documentary evidence to the contrary, they had a complete record of the previous meeting. It is alleged that they were told that the HSE would not accept their notes as evidence and again denied that the offer of a place at Rivendell had been made.
The DeHoras also produced the 2003 letter from the previous director were told that the letter was obsolete.
They claim that they left this meeting “distraught and in total disbelief”.
When contacted by this newspaper, the HSE issued a statement confirming that “the HSE is very much aware of the matter raised by The Wexford Echo newspaper and is in ongoing communication with the family concerned.”
It continued: “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.”
The family met with representatives of the HSE yesterday afternoon in Enniscorthy to discuss the matter further. No agreement was reached. Negotiations are on-going with a view to finding a resolution.
