“WHAT will happen when we’re no longer here?"
That is the question being asked by a group of frustrated parents and family carers who have criticised West Berkshire Council over a failure to plan long-term provisions for those they care for.
The carers, who are now entering old age, say a lack of planning and support means they cannot be certain what care will be provided to their children when they are gone.
The criticism comes following the release of a new report highlighting the issue, which Mencap labelled a “ticking time bomb” as far back as 2002.
The report from Healthwatch West Berkshire says an increase in life expectancy means those with learning disabilities are now outliving their parents and carers in larger numbers, with little to no support provided as the carers become older.
At the launch of the report on Friday, some of those affected said the authorities have “ignored” the problem for too long.
Robert and Carol Winter provide care for their 45-year-old daughter, Karen, and say a lack of planning by the authorities means they cannot be certain what care will be provided for her when they are no longer here.
“We’ve raised it at different times since she was in her 20s,” they said.
“There’s been no thought given to the fact that we aren’t going to be here forever and that there needs to be something in place after that.
“We have wanted to prepare over a long period of time to make it as easy as possible, but here we are 25 years later and we’re still no further forward.”
The couple, now in their 70s, added: “We would like to see her settled and know she’s being cared for.”
The paper, entitled Moving on – the Final Transition, calls for urgent action from the authorities.
However, the new report, which addressed a number of families affected, concludes that the opportunity to move those with learning disabilities into ‘independent living’ with the help of their families has now largely been missed.
The paper goes on: “It also appears a new generation of families with younger dependents may equally risk missing out on a planned transition from care at home, to a more fulfilling and independent life with the appropriate care available.”
To mark the launch of the report, Healthwatch West Berkshire gathered the families at a site in Newtown Road, Newbury, which a decade ago had been earmarked for an assisted-living development.
However, it never materialised.
At the launch, chief officer at Healthwatch West Berkshire, Andrew Sharp, said he was pleased with West Berkshire Council’s response to the report and was hopeful progress on the issue could now be made.
He said: “It has been neglected as an issue for decades. They knew the people were here with a need and knew the people caring were getting older.
“It’s been kicked in to the long grass constantly by different councils over the years. But we’ve been really pleased with the council – they haven’t stuck their head in the sand over this report.
“The council has agreed to the recommendations, which is terrific, and we are going to try to put an action group together, made up of professionals, carers and voluntary sector workers, to get them all around the table to discuss it.
He added: “If we can solve it for one group of people it will hopefully solve it for other groups going forward.”
West Berkshire Council spokesman Martin Dunscombe said: “We work closely with Healthwatch West Berkshire and are grateful to them for producing this report.
“We value feedback from our current and future service users and, as with this report, will use it to help us deliver the support on offer in the coming years.”
He added: “Our priority is always with those whose need is immediate because they have nowhere else to go.
“However, we are actively looking to develop the support we are able to offer for all our vulnerable residents and recent increases in social care funding will help us to achieve this.”
In February West Berkshire Council agreed to increase the precept for adult social care by 1.99 per cent in 2017/18 in an effort to ease funding pressures.