Richard Pearce and his wife Alison care for their son Robert who has a learning disability. They spend a lot of time and energy looking for information and help. What information they do find is very useful, but they would like to see the relevant information and support more joined up and available in one place.
Since he retired four years ago, Richard Pearce has been the primary carer for his son Robert at their home in Southampton. Robert, 19, was diagnosed with a learning disability at an early age and requires help with everyday tasks like shaving and dressing. Richard, 71, and his wife Alison dedicate much of their time to caring for Robert and looking for information about other sources of support.
Robert leads a busy life. He is at college during term time and takes part in activities such as working with horses with an organisation called Equinable. Richard is happy with some of the support they receive, especially when they have contact with the same people over time. Robert currently has a care manager and an advocate to ensure his views are represented. Richard finds some of the resources available very useful.
“Various people were desperately helpful in all sorts of ways. They bent over backwards to give us support. When we first applied for Disability Living Allowance, a lady came and she sat with us for about four or five hours and filled out the form with us,” says Richard.
Richard finds that the care and resources Robert receives depend very much on Richard seeking out information and individuals who can help. Discussing Carers Together, who provide support for carers locally, Richard says, “What was interesting was that for 14 years of Robert’s life, we didn’t know this brilliant organisation up the road existed. We had not heard of them because nobody told us that they existed.”
“Inevitably you spend hours answering the same questions over and over again, because although there are computers, the people involved don’t talk to each other,” says Richard. “You need time and energy. I’m really lucky because I have time to do that, but it shouldn’t take me 14 hours a week to run Robert’s life and all the administration that’s involved.”
Richard was recently made aware that Robert was entitled to receive Incapacity Benefit, but is concerned that this may not be the same for others in his situation.
“I have met 20 parents who had no idea that they were entitled to it,” he says.
Even though there is now more information and resources available than when Richard first became Robert’s carer, he feels it could be better still and more joined up.
“Particularly now, with the internet, there is a huge amount of information. I used to be a financial consultant, and I would go and see my clients every year and explain what in legislation had changed, and what in their circumstances had changed. This is what they should be doing,” says Richard. “What we need is a regular meeting with someone who knows him.”
Richard is particularly concerned about planning for the future and would like more help to plan for Robert’s long-term needs. Richard and Alison have started to think about what’s next with the help of some of the people who work with Robert.
“The current social worker is brilliant,” Richard says. “We’re looking at options for when he leaves college; whether he goes to residential care, or whether he goes to supported living.”
Less time and effort spent by Richard looking for information would help him and Alison focus on thinking about Robert’s longer-term needs.
“We have lost opportunities,” Richard says. “The sort of help we need is proactive. We need that support.”