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For a decade, Elliott Goldsworthy, who is profoundly disabled, has enjoyed regular stays at a short break care centre a 20-minute car journey from his family home.
The teenager, who recently turned 18, is autistic, non-verbal, epileptic, and has severe developmental delay. He needs 24 hour one-to-one care with everything from dressing to eating, and two-to-one support when out.
Over 10 years, Elliott has developed a rapport and familiar overnight routine at the charity-run children’s respite care centre in Hertfordshire. Staff have a deep understanding of what makes him tick; he is energetic, loves jumping, swimming and watching CBeebies.
Now, at 18, Elliott is now too old for the centre because social services rules dictate that he must move to adult social care. Hitting this bureaucratic threshold – the transition from child to adult social services – means Elliott’s decade-old, successful short breaks come to a crashing halt at the end of this month.
Yet his needs are the same; he is a toddler in a young man’s body. And the alternative short break options suggested by Hertfordshire County Council, which commissions Elliott’s care, are not suitable.
Elliott’s experience – what his father Ian describes as “being left in the lurch” – reflects the systemic failure and under-funding of respite care and short break provision, and the notoriously perilous transition process. It is a combination that leaves families in a precarious position.
“We’re facing a cliff edge with the complete withdrawal of a vital support,” says Ian. “Elliott living at home is only possible with respite support. It makes no sense that when respite care is successful, it doesn’t continue with people as they age.”
Ian describes the change to Elliot’s care just because he is 18 as “an arbitrary line in the sand that upends the help keeping our family afloat”.
Government austerity and savage cuts to council funding have decimated respite and short break services.
In Hertfordshire, where Elliott lives, the council closed three respite centres in 2021. This decision, according to minutes from a council cabinet meeting, was made “to make the most efficient use of the current model of short breaks services”.
Nationally, the number of people provided with respite care fell from 57,000 in 2015/16 to 33,000 in 2021/22 according to the King’s Fund.
This makes a mockery of Government aims to ensure disabled people live in the community – not in institutions miles from home – because carers cannot support relatives at home without respite provision.
It also undermines the aims of the 2014 Care Act, designed to prevent a “‘cliff-edge’ where someone reaching the age of 18 who is already receiving support will suddenly find themselves without the care and support they need at the point of becoming an adult”.
The respite funding announced last year for disabled children and young people – £30 million over three years for 10,000 additional respite placements – is a drop in the ocean.
As previously reported by Byline Times, pressure faced by carers has intensified with the impact of the Coronavirus and the cost of living crisis. Carers, says a Kings Fund study, stop the under-resourced health and care system collapsing. Burnout is the biggest reason for breakdown in unpaid carer arrangements, according to the Association of Directors of Social Services.
Elliott’s parents have for years been raising concerns with the council about their son’s transition to adult care because of his complex needs. It was his parents – not the council – who successfully approached his respite care provider for a three-month extension to support until the end of September (Elliott turned 18 in June).
The family wants the current respite support to continue until Hertfordshire finds a suitable adult alternative.
It is worth noting that the word ‘respite’ is often a misnomer. The NHS definition is “taking a break from caring, while the person you care for is looked after by someone else” – for Elliott’s parents it means using respite weekends to focus on their younger children.
Hertfordshire County Council’s overview of its services for disabled adults shows that, in 2022/23, it supported 377 people with a short break and it states that “nationally, demand is outstripping supply and in July 2023, 53 people were waiting for services”. According to the council’s “service overview”, it intends to create “a wider range of overnight, local short breaks for disabled adults”.
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The family, who have a supportive social worker, welcomes the council’s future plans for more respite care. But right now, this solves nothing. And alongside the immediate concerns, they fear for Elliot’s support longer term.
He is in the final year of his special needs school and will hopefully start a local college next September. This, however, will only be four days a week, with a fifth day spent with a community group that has yet to be identified. Given the current struggles with Elliott’s care as he moves to adult services, his parents are understandably apprehensive about what happens as he gets older.
“We’ve spoken to our social worker and even she said that there is nothing we could have done differently to avoid being left in the lurch,” says Ian. “The fact that we find ourselves in this situation is essentially a gross, systemic failure. For young people like Elliott, the message seems to be ‘you’ve got this far – now keep going with less.”
A spokesperson for Hertfordshire County Council said: “We would like to acknowledge the distress caused to disabled people and their families by the shortfall in available short break services in Hertfordshire. We are working hard to find services in our care markets to increase provision.
“However there is a national shortage of overnight respite services, primarily impacted by working people leaving the care market and by increases in the cost of living. We are actively pursuing options to increase capacity in the short and long term as a priority. We acknowledge how important respite services are for enabling unpaid carers to support their loved ones.”
Saba Salman is the editor of ‘Made Possible: Stories of Success by People with Learning Disabilities – In their Own Words’. She is chair of the charity Sibs, which supports the siblings of disabled children and adults