Nothing has been done to help adults with learning disabilities when their parents are no longer able to care for them – 15 years after the issue was first raised.
That was the finding of a Healthwatch West Berkshire report, published on Friday, after work with elderly parents who are increasingly worried about what will happen to their children in the future.
The study found there are no transitional plans in place for adults with learning disabilities if parents who are caring for them die, or become too old or too ill to do so.
West Berkshire Council does get involved when the parents can no longer care for their children.
But for the parents working with Healthwatch West Berkshire, this has left them uncertain and concerned about what will happen to their child in the future and unable to help plan what that might be.
Carol and Robert Winter are both in their early 70s and are carers to their 45-year-old daughter Karen.
“What we want to be able to do is work with the authorities, support her to move and keep close contact while she settles,” said Carol.
“But that’s something they don’t seem able to do – they just seem to deal with an emergency when it comes.
“If we turned round and said ‘that’s it, we’re done, we can’t do it any more’, then they would sort something out, but it wouldn’t necessarily be what would suit Karen and would be a very traumatic experience for all of us.
“So you keep plodding on and that’s fine for as long as you can keep plodding on, but once something goes wrong that’s when the problems start and that’s what we’re trying to avoid.”
The issue has previously been brought up in a report by Mencap published in 2002, which detailed nationally how provision was not being planned for those with learning disabilities.
Andrew Sharp, chief officer of Healthwatch West Berkshire, said: “It is the stories of the people whose own health is suffering. They’re elderly, and they should be getting care, yet alone they are caring for somebody with challenging needs.
“Because the carers do such an amazing job, perhaps previous councils have been able to not give this too much consideration.
“The carers are as important as the person they’re caring for and the council recognises this so what we’re really hoping for is we come up with some solutions.”
West Berkshire Council said it would be taking the feedback from Healthwatch on board to see if changes could be made.
It said in a statement: “We value feedback from our current and future service users and, as with this report, will use it to help us deliver the support in the coming years.
“Carers are some of the unsung heroes in our communities and we appreciate the contribution they make towards the lives of those people they care for.
“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.”