Parents of disabled children in Sunderland feel 'left with nothing' by youth group policy at Grace House

Parents of disabled children say they feel “discriminated against” for their youngsters being “too disabled” after being informed their children were not eligible to attend youth group sessions at Grace House.

With respite care at Grace House due to come to an end in November 2023, parents say they were hoping to access the charity’s youth group.

Parents who spoke to the Echo say Grace House had offered to continue to support them as respite care ended and a number had seen a messaged from the charity about places at their youth group, with spaces available on Mondays, Tuesdays and Wednesdays from 4pm to 5.30pm for “10-18 year-old disabled young people”.

However, parents who enquired about places say they have been informed their children are not eligible with the severity of their disabilities meaning they would need one-to-one care support.

Grace House have responded by saying they do have a programme of activities for “the whole family” and CEO Victoria Brown has urged families to get directly in touch with her for more details.

However, parents of children in respite care say they have been “left with nothing”.

Tracy Cruddas’s daughter Katie Cruddas did actually attend the youth group sessions for 10 weeks but was told the place was given as a “mistake” and it was not renewed when the next block of places were available.

Tracy said: “Katie has cerebral palsy, is peg fed (through a tube into her stomach) and is non verbal. She really enjoyed the youth group and got a lot out of it.

“They used to do arts and crafts and it was a different environment for Katie to visit and to socialise with other young people.

“With respite care having also now finished, she has been left with nothing. I did ask about the youth group. Katie has complex needs but the criteria means she is not able to attend as she needs 1-1 personal care.

“When I asked about why she had been able to attend I was told this had been a ‘mistake’.”

Parents speaking with the Echo explained personal 1-1 care includes needs such as going to the toilet, peg feeding and administering medication.

Tracy said: “My understanding is the whole reason Grace House was established was to support children with complex needs and disabilities but its purpose seems to have changed to something else.

“All the kids in respite have complex needs and need 1-1 care. The criteria means our children are being excluded and have been left without any form of social support and it’s really annoying.”

Responding to Ms Brown’s statement that activities are “available for the whole family”, Tracy added: “There are activities to support parents and even siblings, but not for the children themselves who have the complex needs.”

It’s a sentiment shared by Amy Hassock whose son Aaron Rochester has been attending respite care at Grace House.

Aaron, nine, has epilepsy, ADHD and learning disabilities but Amy has been informed he cannot attend the Youth Group due to 1-1 care needs.

Amy, 30, said: “I’m really annoyed and feel as if Aaron is being penalised for being too disabled. It seems that any children with 1-1 personal care needs are being excluded from this service.

“He didn’t meet the criteria and so, along with the closure of respite care, we have been left with nothing.

“Based on this criteria, I don’t know any children who were in respite care who would be eligible for the youth group service.”

Jade Powney’s son Tyler, 14, has autism, Down's syndrome and epilepsy and has attended respite care at Grace House for eight years.

Jade, 32, said: “At least this would have been a couple of hours each week for Tyler to have taken part in activities and socialise with other children.

“My understanding is the charity was set up to support children with severe and complex disabilities, yet these are the children who are being excluded from accessing this facility.”

Kelly Whitely, 48, whose daughter Amelia is autistic, non verbal and has severe learning needs, added: “This is a charity which I believe was originally set up for children with complex needs and disabilities, yet they are now turning away children in this position.”

Deb Charlton has spent time volunteering at Grace House where her grandson Ben Charlton, 13, has been attending respite care.

Ben has severe autism, ADHD, OCD and anxiety.

Deb said: “I feel like we are being discriminated against. This whole situation is having a massive effect on me and it’s very upsetting and disappointing.”

Laura Grainger, whose son Brendan has lowe syndrome, said: “We were informed children had to be able to self-care in order to attend.

“My understanding was the purpose of the charity was to support children with complex needs.”

Despite questioning the criteria, all the parents who spoke with the Echo said they would be willing to attend the youth group to provide 1-1 care when needed which would enable their children to take part in the activity.

Former Sunderland City councillor, Pam Mann, who chaired the Give Us a Break campaign group which opposed the ending of respite care at Grace House, and also has a daughter with disabilities, said: “With the ending of respite care and exclusion from these groups, these children have been left with nothing.

“Kathy Secker founded Grace House on the principle of supporting severely disabled children and their families and it now seems the charity is changing its whole purpose and steering away from this.”

Responding to the situation Grace House CEO Victoria Brown said: “We do have a programme of activities which are available for the whole family. Please encourage the families to contact me directly and when these activities are scheduled I will ensure they are invited.”

The situation follows on from a long running dispute over the ending of respite residential care at the centre which is finishing this month.

The care facility was located on the ground floor of Grace House and was provided in partnership with Sunderland Care and Support (SCAS), who provide the care, which was funded by Together for Children Sunderland (TfC).

The City Council is in the process of purchasing a new building to provide residential respite care for families and children with severe and complex disabilities but concerns remain over the timescale of it becoming operational.