The mother of a disabled child said that childcare, short breaks and respite for parent and carers had been “wholly inadequate” for years.
Natalie Woods, who represented SEND Us A Break, received cheers and applause from parent and carers in the public gallery after her deputation to Brighton and Hove City Council’s cabinet members today (Thursday 13 February).
She said that despite receiving direct payments to cover the costs of their children’s care, families of youngsters with special educational needs and disabilities (SEND) were frequently asked to give their funding back because the services were 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 and carers and their children staged a protest before the council’s cabinet meeting to highlight the need for breakfast and after-school clubs, childcare, short breaks and 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 that 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 that despite a waiting list for respite care, Brighton and Hove is renting out its site at Drove Road to other councils
Parents want the council’s site in Drove Road used to develop daycare, holiday clubs, respite, workforce development and an emergency respite bed.
Ms Woods said that 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 that the budgets would be looked at and a meeting organised with SEND Us A Break, the Parent Carers’ Council (PaCC) and the charity Amaze early next month to agree a work programme looking at short breaks.
She said that 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.
But Councillor Daniel said that 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.
Neighbours, acquaintances, and some family have made half-term plans or can visit inspiring places making memories while we hardly have anywhere to go. Career, pay, and support for paid care is abysmal so very little chance or options for respite. Reading Emma’s Daniel’s comments I have very little confidence that if they stick to this strategy they would be effectively or creatively helping families. I hope future meetings will actually see parent feedback as a source for better strategy and use it to provide a more than bare bones service