Mum in plea to trust for more help so disabled Ellie can remain at home for care
A distraught Northern Ireland mother has said she is being pressured into putting her blind daughter into care because the vital support she needs at home is not in place.
Tracey Henry raised thousands of pounds to adapt her Coleraine home for 15-year-old Ellie, whose condition means she cannot walk and needs round-the-clock attention.
The Sandelford Special School pupil contracted meningitis as a newborn. As a result she is now in a wheelchair and has multiple health issues, including a tendency to self-harm.
Cerebral palsy and brain damage then led to severe epilepsy, but with the help of four carers 45-year-old Tracey has been able to keep Ellie at her Broomhill Park home.
However, the mother-of-two recently underwent surgery on her wrist and said she cannot look after her daughter without additional help for the next six months at least.
Speaking to the Belfast Telegraph, she said she desperately needed a better care package to ensure that her eldest girl is properly looked after while her wrist remains in a cast.
"I can't use my right arm, which makes things really difficult for me with Ellie," she said.
"She can't walk or turn herself over in bed and she needs to be changed several times a day. The support I'm getting isn't enough. I'm really frustrated because I don't know what to do.
"My 11-year-old daughter Kayla helps out, but it's too much to expect her to take over my role.
"I don't want to put Ellie into care, she's happy at home.
"But I'm being forced into that situation and being made to feel like a bad mother, even though caring for her at home is much cheaper than residential care." The Northern Trust said that Tracey was currently getting 126 hours' daytime care during the week through two carers, plus 9.5 hours for seven nights through a package that is worth almost £2,000 a week.
But she argued that Ellie, who only speaks a few words, requires 210 hours' care to give her adequate assistance.
Independent Unionist MLA Claire Sudgen said it has "felt like a continual battle trying to get Ellie the care she is entitled to" but added that she hoped to have a meeting "with all involved" as soon as possible.
She said: "Ellie, her mum Tracey and sister Kayla are an incredible family.
"Ellie is a wonderful girl who is clearly so loved.
"I remain disappointed that Tracey feels let down by those public services whose job it is to assist her."
The Northern Trust said it "appreciates the level of anxiety felt by Ms Henry surrounding the care of her daughter Ellie".
"To allow Ms Henry to care for Ellie at home, Ms Henry's home was assessed and a number of adaptations were recommended to meet Ellie's assessed need," it added.
"These adaptations were paid for in full by the Disabled Facilities Grant.
"Ms Henry chose to enhance the basic adaptations that were agreed."
The trust said it offered Ms Henry "a short-term respite support break", which it offers "to all families with assessed need".
It also said the level of night-time cover "had been assessed using information provided by Ms Henry" but it has now offered "to do a formal night-time assessment over a couple of nights to formally assess Ellie's night-time needs".
It added: "Up until May 31, 2017 (the time of the surgery on her arm), Ms Henry was in receipt of 51 hours of care per week, through direct payments.
"Following several reviews, the current package, including the additional 10 school holiday/summer time hours, stands at 18 support hours per day.
"These increased support hours allow for two carers for changes and transfers at key times, ensuring Ellie's assessed needs are fully met.
"This results in a total of 126 hours per week plus seven (9.5hrs) nights.
"The total support package is currently £1,961.75 per week. Ms Henry has a significant accrual in her direct payments account, with recently agreed uplifts to be added this month; this should prevent the use of any personal funds to finance Ellie's care."