Carers demand a charter of change for ‘invisible’ disabled

I would like to see Trevor happily settled in supported accommodation before I die,” says Anne Harkes, of Cramond in Edinburgh.

“My worry for the future is that Trevor would not continue to have the good quality life that we can give him.

“I would like him to live in the same type of area as he does – a place with plenty of greenery and space to move around. And with good care staff who can get to know him well.”

Anne’s younger son Trevor is 38, and has profound learning disabilities, as well as a type of epilepsy which is not easy to manage, even with medication.

She and her husband have always looked after Trevor, but both are now retired and in their 60s, and the future is what worries them. “I can get things to work in the short term, but I am scared about what might happen in the years after I am gone,” says Anne.

“This is not just a personal thing,” she adds. “My story is the same as that of thousands of other people across Scotland.”

At least 7,000 people are in a similar position, according to new figures from the Scottish Consortium for Learning Disability. Based on their own research they estimate there are 4,628 people in Scotland caring for a person with a learning disability who lives at home, and a remarkable 2,202 carers aged 80 or over.

It isn’t hard to see the problems this is storing up. Elderly carers can die, or become incapacitated, or the needs of their adult children can become overwhelming.

Adults with Down’s Syndrome, for instance, are living longer than they would have done in the past, but with that comes a greater risk of a dementia-like illness similar to Alzheimer’s, which can be heartbreaking for parents and sometimes the final straw. For many, the stress of daily caring is multiplied by anxiety about the future.

A coalition of carers and charities tomorrow launch a charter for change, demanding that central and local government implement five steps which they say would improve the situation for such ‘invisible’ families. These include the provision of a dedicated officer for older families in each local authority area who they can work with to access support and plan ahead.

Jeanette Kelly in East Kilbride has benefited from just such a service. Now 83 and a widow, she has looked after her daughter Vanessa, 49, since she was born with Down’s Syndrome.

Due to her husband’s job in the Merchant Navy, Vanessa has had a good life, and has travelled the world. “I’ve really tried to give Vanessa the best life we can, and it’s not over yet,” Jeanette says. “Tonight we are off to the club for a dance.”

However the octogenarian knows things will only get harder. “I am attending the physio right now as my hips are bad. Vanessa leans on me when we walk and it puts a strain on my hips.”

Nothing has come easily for Jeanette, and she has been at the forefront of the fight in Scotland to let people with disabilities play a full part in society. But of late she has been helped by South Lanarkshire Council which has taken a national lead by appointing a specialist social worker to act as a contact point for older carers and their families.

Claire Pearson describes her post as having three main aims: increasing the support for older carers, raising awareness of their needs, and helping 600 known older cares in South Lanarkshire plan for the future.

“Helping older carers to think about planning for the future is the first step and does not involve a huge financial commitment from the local authority,” Pearson says. “Much of the work in supporting older family carers is around how we communicate with carers, the information we give and the approach we take.”

The benefits work at various levels, she explains. “I recently visited an older mother. In a single visit, I was able to make sure her son was on the housing list, got her information on the Power of Attorney and ensured she knew about the Council’s Emergency Social Work Service.

“But most importantly this mum was given the individual support she needed at the time to think about planning for her son’s future and she was listened to, supported and reassured.”

Not all local authorities are so advanced in dealing with this problem. When the charity Quarriers published their Missed Out, Missing Out report in 2008, one local authority worker told researchers: “We didn’t know if people were dead or just not getting a service.”

“This presents a disturbing image of extremely limited lifestyle choices and opportunities” says Paul Moore, Chief Executive of Quarriers, one of the charities backing the charter to be launched this week. He adds: “Missed Out Missing Out shows that adults with learning disabilities living in the family home have become the invisible. Their needs and aspirations and those of the families who care for them, are unknown, their future requirements disregarded, and their right to recognition and resources ignored.”

This is why one of the points on the charter is a call for Scotland’s 32 councils to carry out research on the numbers, needs and location of older carers and adults with learning disabilities living in the family home. As well as this, and dedicated workers in each council area, the five point charter calls for a person-centred plan for anyone dependent on an older carer, an emergency plan which sets out what will happen to them in a crisis, and the chance for each family to access independent advocacy if they need it.

Ian Hood of the Learning Disability Alliance Scotland (LDAS) said: “The needs of these families have been known for years. Now is the time they were given the proper support.”

As for Anne Harkes, she gets 42 days of respite support a year from her local authority. “Let’s be clear, none of it came easy,” she says. “I had to fight for it all, every step of the way.”

Like Jeanette Kelly, she has worked hard to give Trevor the best life possible and is now working hard to make sure his support remains good. And, despite the current pressure on public finances, she’s making no apologies for asking for that support.

“Carers save the government large amounts of money, one estimate says £7.6bn every year in Scotland alone, so it would be good to get a share of that pot for Trevor as he gets older.”