Respite care: 'Burnt-out' mum says respite shortage affecting her family

Some families in Northern Ireland are on the edge of placing their children into care due to the lack of respite services, a children's rights lawyer has said.

Respite care is provided by the health trusts for the parents of children with additional needs.

It allows parents or carers to take a break from caring and have their children looked after overnight.

Short-term services have been reduced, the trusts have confirmed.

This is because facilities are being repurposed to provide emergency care to children who cannot live at home or cannot be cared for in the family type arrangement.

Staffing and recruitment is also an issue.

Roisin McMackin said she is burnt out looking after her 12-year-old daughter, who has complex needs

None of the trusts have returned to pre-pandemic levels of service.

Roisin and Brendan McMackin's 12-year-old daughter, Masie, is autistic and has a learning disability.

At school, Masie has two care assistants to help look after her during the day.

At her home in Beragh, County Tyrone, it is Masie's parents who take care of her.

In the summer months, it is a 24-hour-a-day-job, seven days a week.

Masie has never received any respite care from the Western Trust, according to her mother.

"She doesn't sleep. She is awake all through the summer holidays," said Mrs McMackin.

'Burnt out'

"She tries to climb out the windows, she'll flood the bathroom, she'll run a bath, she'll try to turn on the cooker. It's 24-7."

Mrs McMackin said she was burnt out due to a lack of sleep.

She said the situation was taking its toll on her other three daughters.

"I feel like I neglect the other three children," she said.

"They don't get the attention they deserve.

"They all have needs in their own right but I feel I can't do anything for them. I'm so focused on Masie."

Eamonn McNally, of the Children's Law Centre, said families are on their knees

The Western Trust acknowledged that its respite services were under "intense pressure".

"This is largely due to the need to provide medium/long term residential care for a number of children whose placements have broken down," it said.

"The trust very much recognises the stress and strain the current situation places on families and is committed to resolving this issue at the earliest opportunity."

More families not coping

Eamonn McNally, a mental health solicitor at the Children's Law Centre, said families were on their knees because of the lack of respite services.

"Families don't have respite, they don't have other services available to them, they don't have help within the community.

"They are relying on friends and families."

Parents "love their children, they want their children at home with them but some young people are on the edge of care".

Shirelle Stewart, National Autistic Society NI director, said the lack of respite care meant an increase in the number of families who could not cope.

Ms Stewart said that when a facility is repurposed to accommodate a young person in need of longer-term care, that facility becomes a home for that individual.

It means it is then closed to respite for anyone other than that individual.

Shirelle Stewart, National Autistic Society NI director, said the lack of respite care means families cannot cope

When respite services are unavailable, the Trusts can give direct payments to families to arrange their own carers.

Mr McNally said families were unable to get the staff to look after their children.

If they do, they could not retain them, he added.

"While on paper it might look like there is a resource there for the family, the reality is they cannot get the help using the direct payments."

Mrs McMackin said she needed two people to work with Masie and that recruitment was near impossible.

She said "nobody wants to work with Masie".

Any agency staff that come out "never come back", she said.

"Masie is just too challenging."

The picture across the trusts

• The Western Trust has two facilities that provide respite care for children - Avalon House and Rosebud Cottage. Both are currently closed.

• The South Eastern Trust has half the number of beds it had available for respite prior to the pandemic. One of its two facilities has been repurposed to provide longer term care.

• The Northern Trust's Whitehaven facility has been closed for respite for the month of June due to a young person being admitted for an emergency placement.

• In the Belfast Trust, one of the two facilities being used for respite is closed for refurbishment.

• The Southern Trust said it had not returned to pre-pandemic levels of respite availability.