The mother of a disabled child says childcare, short breaks and respite for parent/carers has been “wholly inadequate” for years.
Natalie Woods who represented SEND Us A Break, received cheers and applause from parent/carers in the public gallery after making her deputation to Brighton and Hove City Council’s cabinet members on Thursday 13 February.
She said despite receiving direct payments to cover the costs of their children’s care, families of youngsters with special educational needs and disabilities (SEND) are frequently asked to give their funding back as the services are not there.
Ms Woods said: “The direct payments scheme relies on PAs (personal assistants) – a limited workforce and the minimum wage as a barrier to recruitment and retention.
“Many families cannot find suitable PAs, the direct payments then build up in supported bank accounts as a surplus – and it appears on paper that families have the support they have been assessed as needing.
“To add insult to injury the families are then asked to return the surpluses – and who knows what happens to that money – there is no evidence to suggest that it is used to develop the very support services that are so lacking which caused the surplus to build up in the first place.”
Parent/carers and their children staged a protest ahead of Brighton and Hove City Council’s Cabinet meeting to highlight the need for breakfast and after school clubs/childcare/short breaks/respite care for children with special needs and disabilities.
The council is required to provide support services, but for children like her son who need one-to-one support, she said the provision were “significantly inadequate”.
Ms Woods said parents were asked in a recent survey to choose between “targeted” and “specialist” provision or specialist only, but parents did not want to have the responsibility of choosing between the two.
There is also a lack of respite care services, to give parents of children with complex needs a break.
Ms Woods said despite a waiting list for respite care, Brighton and Hove is renting out its site at Drove Road to other councils
Parents want to see the council’s site in Drove Road used to develop daycare, holiday clubs, respite, workforce development and an emergency respite bed.
Ms Woods said the lack of staff has often resulted in cancelled respite there.
Ms Woods said: “Families with SEND children have a right to the same childcare provision level that families with non-SEND children access – as well as additional respite support for parents.
“This is a statutory requirement and it is an issue of equality. It provides nurturing opportunities for our children to thrive and reach their full potential.
“It enables parents to work, study, spend time with our other children free from caring responsibilities, and supports us in staying physically and mentally well so that we can continue caring for our children – saving you the LA (local authority) from having to care for them for us.”
Councillor Emma Daniel said there are no budget cuts to services for disabled children.
The cabinet member for Children, Families, Youth Services and for Ending Violence against Women and Girls said the council has approved new policies around direct payments to make them more accessible and an extra £500,000 annually into the SEND budget.
On holiday support, Councillor Daniel said there is more SEND holiday services, wrap-around school provision and respite.
She said: “We know you are concerned about are the number of holiday sessions available to children with more severe disabilities who need a high number of staff to work with them for them.
“Officers are working with families on what this should look like within the existing budget parameters. As an administration, we do support that as a priority.”
Councillor Daniel said the budgets will be looked at and a meeting organise with SEND Us A Break, the Parent Carer Council (PaCC) and the charity Amaze in early March to agree a work programme looking at short breaks.
She confirmed there had been some confusion about budget restrictions earlier in the year where staff working at Drove Road thought they were subject to a council-wide overtime ban.
However, Councillor Daniel stated this was not the case and it took a week to sort out. The site is currently being used by a young person and another flat is proposed for use by Sussex councils.
Live posts on Bluesky during the deputation can be seen on Skywriter Blue here.
