New standing commission on carers

Just in case anyone has had problems with the link provided, like I just have, I've copied and pasted the article, but it is in this weeks Guardian.

Annie Kelly on the new standing commission for carers

Q&A: carers

Rights direction

The new standing commission for carers will put them at the heart of government policy and service provision, says its head. Annie Kelly finds out how it will achieve its aims and if the enthusiasm is shared
Q&A: carers

Wednesday September 19, 2007
The Guardian

Philippa Russell: "We have a huge responsibility to create a support network." Photo: Graham Turner

Two weeks ago, Gordon Brown offered Britain's 6 million carers a greater say in the policies that affect them when he announced a new standing commission on carers. It is a message that Philippa Russell - the disability rights commissioner and seasoned learning disability rights campaigner who has been given the task of heading the new commission - has been "banging on about" for nearly 40 years.
Although still at an embryonic stage, Russell believes the commission has the potential to transform the future agenda for social care by putting the voice of carers at the heart of policy making. "This is an exciting decision that very much fits with the huge debate about social care that is happening at the moment," she says. "And I think it could have a transformational effect on carers and the services we can provide them with."

Once up and running, the commission will be instrumental in overseeing the consultation and implementation of an updated Strategy for Carers, due to be published next year, and the £33m New Deal for Carers, announced by the prime minister in February. "In practical terms, the standing commission can help ensure the voice of carers is absolutely central to all the major policy decisions that are being taken to try to service the rapidly changing face of care in the UK today," Russell says.

"People are living longer and surviving with more complex disabilities. And, as the number of carers grows, we have a huge responsibility to create a support network that not only enables carers and their relatives to lead ordinary lives but is also cost-effective and high quality from the view of public services."

One area she wants the commission to focus on is finding ways of providing a "new type of social care" that will meet the changing expectations of the quality of life of carers and of those they are caring for. "In the 1960s, becoming a carer felt like the end of the road in many ways," Russell says. "Now, quite rightly, family carers do expect to be able to support their relatives and to ensure they have the best possible care, but to also get on with their own lives."

Rights and needs

Russell cites a statistic from a Carers UK study that says 80% of carers are of working age, but 58% give up work because of their caring responsibilities. She campaigned for the Carers (Equal Opportunities) Act of 2004, which for the first time built the rights of carers to respite services, leisure activities and employment into the framework for assessing carers' needs.

One of the commission's first tasks, she hopes, will be to ensure that the act is implemented with the "vigour and enthusiasm it deserves", Russell says. "The Carers Act was a landmark in our campaigning, but there have been very varied interpretations of what it means on the ground. One of my big hopes is that the new standing commission will be able to find better ways of enabling local authorities and their health counterparts to work in better partnership with family carers and with organisations of disabled people so we can work out how to provide flexible, appropriate services."

For instance, she says, the commission could look at placing the voices of carers and those needing care into broader policy areas such as housing that have the potential to reduce the need for hands-on personal care. "Thankfully, we're moving away from the old reliance on institutional care, and the policy swing and personal perceptions of caring have moved from dependency towards independence and more personalised public services for people with learning disabilities," says Russell. "But this does not mean that individuals or families should be left to get on with it."

Russell has long been a fierce advocate of independent living for people with learning disabilities. Her commitment has been shaped by the first-hand perspective of caring for her son, Simon, now 43, who is learning disabled and lives independently in Chichester, West Sussex, supported by day care services and key workers.

"I see a key role for myself as enabling Simon to live as independent a life as possible, which is something he's always wanted," she says. "One of the criticisms always levelled at family carers is that we're overprotective and hold back our relatives, but I think if we want to ensure that all our good plans and strategies work we have to ensure that family carers have confidence in the support on offer."

Simon's diagnosis at 18 months old was a turning point in Russell's life. She and her husband returned to the UK from a Foreign Office posting in Malawi in 1968 to find that Simon, who in Malawi had gone to nursery school and been involved in the community, was classed as "ineducable" in the British system.

"There was this attitude where they were classed as a 'special child' and you were classed as a 'special parent'," she says. "Well, you don't want to be a special parent. You want support and you want people to believe in your child's potential like you do yourself. I was horrified by what I came up against."

She joined forces with Mencap on a campaign that led to the 1970 Education of All Handicapped Children Act, which gave all disabled children the right to state schooling. It convinced her that carers could make a bad system better - something she believes has got her through the discrimination and stigma that she and her family have experienced in the years since.

"When I look at how far we've come it does give me great encouragement for the future," Russell says. "Generally, attitudes are much more positive. When I go out with Simon, there is a sense that he is able to become a part of his community. This certainly wasn't always the case when he was young."

Even so, the increasing accounts of hate crime against people with learning difficulties living independently in communities show that much still needs to be done to protect vulnerable and often isolated learning disabled people who can find themselves the target of exploitation and abuse.

While Russell finds such crimes "horrendous, just a hideous indictment of some people in our society", she insists that hate crime should not be an argument against people with complex learning difficulties living independently.

"We have to disaggregate what we mean by independent living," she says. "For most of us, independent living means having a system of friends and family and support. We have to make sure that people with learning disabilities have the same systems in place, and we have to find better ways of protecting vulnerable people. Hopefully, we can do some work on this through the commission by working closely with carers and listening to their experiences and views on what support their relatives need to be able to live as independently as possible but with the maximum safety."

Off the radar

To do this effectively, the new standing commission on carers will be reaching out to those harder-to-reach carers, such as those in black and ethnic minority communities, that Russell acknowledges are mostly off the radar of government. The growing number of young carers - around 175,000, according to the charity Carers UK - will also be a particular concern for Russell's commission. She has found that many young carers are too afraid to ask for help for fear that they'll be judged inadequate, or that they will be taken into care themselves because they are not coping with the situation.

"I want the commission to be not only leading policy developments but also acting as a catalyst to improve communications between carers and local authorities," Russell says. "The more information we have, the more targeted resources can be and the more informed we'll become."

Resolutely supportive of Brown's government and its emerging social care agenda, she wants the commission to be the focus for a renewed and continuing role for carers in defining and shaping their own care agenda.

The issue of how much influence the commission will have over the future funding of services for carers is unresolved, a point that Russell insists will be ironed out when the commission is up and running.

"I do strongly feel that the direction of travel is right," she says. "But, yes, we've still got a long way to go. I've been doing this for 40 years. The end of the road is still not in sight, but at least I feel we're getting there slowly."

Cause for applause

The announcement of a new standing commission on carers has been greeted with applause from carers' charities and support groups.

"It's obviously important that the commission has some teeth and that what is recommended actually has an impact on the ground," says Emily Holzhausen, head of policy and public affairs at the charity Carers UK. "The national carers strategy of 1999 was an important step forward but has lost momentum over time, so hopefully the commission will provide the government with a consistent overview of how any new policy is working."

Mencap, the learning disability charity, says the commission could have an influential impact on the provision of respite services to families caring for relatives with learning disabilities. "This is an area where there needs to be significant extra investment, which we hope the commission will push for," says David Congdon, head of campaigns and policy at Mencap.

Shan Nicholas, chief executive of the Princess Royal Trust for Carers, says Philippa Russell's emphasis on what the commission can do for young carers is "extremely welcome". She says: "In an ideal world, there wouldn't be any young carers. So, fingers crossed, the commission can genuinely take a more family-orientated approach to the problems carers face."

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