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

Some families in Northern Ireland are on the verge of placing their children in care due to a lack of respite services, a children’s rights advocate has said.

Respite care is provided by the Health Foundations for the parents of children with additional needs.

It allows parents or carers to take time out from care and leave their children in care overnight.

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

This is because facilities are being repurposed to provide emergency care for children who live away from home or cannot be cared for in a family-like arrangement.

Personnel and recruitment are also an issue.

Neither trust has 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 teachers who take care of her during the day.

At their home in Beragh, County Tyrone, Masie’s parents take care of her.

In the summer months, it’s a 24-hour job, seven days a week.

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

“She’s not sleeping. She’s up all summer vacation,” said Mrs. McMackin.

“She’ll try to climb out the window, she’ll flood the bathroom, she’ll run a bath, she’ll try to turn on the stove. It’s 24-7.”

Ms McMackin said she was burned out from lack of sleep.

She said the situation has taken its toll on her other three daughters.

“I feel like I’m neglecting the other three kids,” she said.

“They don’t get the attention they deserve.

“They each have their own needs, but I feel like there is nothing I can do for them. I’m so focused on Masie.”

The Western Trust acknowledged its recreation services were under “severe pressure”.

“This is largely due to the need to place a number of children whose placement has broken down into a medium/long term residential care,” it said.

“The Foundation is acutely aware of the stress and strain that the current situation is placing on families and is committed to resolving this issue as soon as possible.”

Eamonn McNally, a mental health advocate at the Children’s Law Center, said families are on their knees over the lack of respite services.

“Families don’t have respite, they don’t have other services available, they don’t have help within the community.

“They rely on friends and families.”

Parents “love their children, they want their children to be at home with them, but some young people are on the fringes of caring”.

Shirelle Stewart, NI director of the National Autistic Society, said the lack of recreational care means an increase in the number of families who are unable to cope.

Ms Stewart said when a facility is converted to accommodate a young person who needs long-term care, that facility becomes a home for that person.

It means that it is then closed to anyone other than that person.

If respite services are not available, the trusts can make direct payments to families to organize their own caregivers.

Mr McNally said families have not been able to get staff to look after their children.

If they do, they wouldn’t be able to keep them, he added.

“While it may appear on paper that there is a resource there for the family, the reality is that they cannot get the help with the direct payments.”

Ms 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 employees who come out “never come back,” she said.

“Masie is just too challenging.”