All posts by Saba Salman

Saba Salman is a social affairs journalist and commissioning editor who writes regularly for The Guardian. Saba is a trustee of the charity Sibs, which supports siblings of disabled children and adults, and an RSA fellow. She is a former Evening Standard local government and social affairs correspondent.
Cuts, Disability, Health, Housing, Learning disability, Local government, Older people, Social care, Uncategorized

Sticking plasters, surgery and spending reviews

A damp squib of a sticking plaster, or what health secretary Andrew Lansley has said is the “most comprehensive overhaul [of social care] since 1948” and an end to the care lottery?

Most early reaction to today’s long awaited care and support white paper and its associated draft bill is firmly on the side of the former view.

I’ve yet to read all the detail, but while there’s a much-needed focus on elderly care, there’s not enough of a recognition for other sections of society needing care and support, and nothing to plug the funding gap.

As Merrick Cockell, chairman of the Local Government Association, told Radio 4’s Today programme this morning: “We haven’t got time to tinker around…We’ve got to look at radical change.” The LGA has said there is a £1.4bn gap this year between the money available and the cost of maintaining social care services. There’s a good run down of the council perspective on the LGC website and while this post from Ermintrude2 was written before the publication of the white paper, it’s a really good explanation of the issues.

While today’s announcement picks up some from the Dilnot report (Dilnot suggested a system for the elderly where the total cost of care would be capped to £35,000 and support to old people should be extended to those with assets of £100,000), any “victory” for common sense and civil society is bittersweet because it fails to lacks the cash to make real far-sighted change a reality. The proposals might well show good will, but there’s no financial way (this communitycare.co.uk piece relates to the vision for social work, which could be undermined by the lack of cash).

It is, as shadow health secretary is quoted in the Guardian’s politics live blog as saying, “a pick and mix approach to the Dilnot package”. So the government hasn’t taken up the “once in a lifetime opportunity” that Dilnot mentioned when he launched his vision of how to fix the social care system.

Among today’s main points are plans for an optional social insurance scheme under which people pay the government premiums to ensure that their costs for care and accommodation are capped, and a “universal deferred payments” system where councils lend money to those needing care, then recover the cash when the house is sold after death. Sound sensible – perhaps even familiar? That’s because it’s already in use – around 9,000 people already used deferred payments.

Today’s government press statement suggests we watch this space: “The government will continue to work with stakeholders to consider in more detail variants under the principles of the Dilnot commission’s model, before coming to a final view in the next spending review.”

Having already waited with bated breath for today’s long overdue white paper and draft bill, it’s unlikely that many will hold it much longer.

Here’s a flavour (by no means a comprehensive round up) of reaction on Twitter and the web to today’s social care white paper:

Richard Humphries, senior fellow at the King’s Fund: “There is a financial vacuum at the heart of these proposals which undermines the bold and ambitious vision for a reformed system set out in the White Paper.”

Julia Unwin, chief executive of the Joseph Rowntree Foundation: “Successive governments have failed to act. Without a sense of urgency more of us face insecurity and uncertainty as we age. The failure to address social care properly will only mean more pressure on the NHS thereby destroying all hopes of a sustainable and functioning health system in the future.”

Clare Pelham, chief executive of disability charity Leonard Cheshire Disability: “It is a question of fundamental decency that disabled and older people should be able to live their lives with dignity in Britain in the 21st century. We hear a great deal about the need to support older people through dignified social care, but it is important that the needs of younger disabled people are not overlooked.”

Mark Goldring, chief executive of Mencap:”The social care system is in crisis. Years of underinvestment and cuts to services have left one in four adults with a learning disability literally stuck in the home, isolated and at risk, with family carers at breaking point and scared about the future…We are reassured to see that the Government has committed to fund immediate reforms, but this promising blue print will never get off the ground if it fails to address the chronic underfunding in social care. The Government cannot delay any longer, and must now outline an urgent plan of how it intends to fund social care reform in the long term.”

Carers UK chief executive Heléna Herklots: “The measures set out in the draft Care and Support Bill would move from piecemeal carers’ rights legislation to the establishment of carers’ rights in government legislation and, for the first time, equalise carers’ rights with disabled people rights…But to make these rights a reality, what carers also need is a social care system with the resources to overcome years of chronic underfunding and rapidly growing demand. Those who face soaring care bills, service cuts and a daily struggle to access even basic support from the social care system, may see new rights in legislation as empty promises without the funding to back them up.”

David Orr, chief executive of the National Housing Federation: “We’re pleased the White Paper recognises that housing is crucial to the integration of health and social care, and welcome the investment to build more supported housing for older people and younger disabled adults…We need a health service that invests in services that keep people out of hospital, not one that simply treats them when they get there….the Department of Health needs to encourage local government and the NHS to pool budgets, focus on housing-based preventative services and set out its full proposals for the funding of social care – for today and for tomorrow.”

Nick Young, chief executive of the British Red Cross: “That the Government is accused of failing to address the social care crisis is no surprise. The scale of the funding problem is enormous and growing. It will take courage, creativity and tremendous degree of political will to solve. That isn’t going to happen overnight.”

Reaction on Twitter using hashtags #carewhitepaper, #ukcare and #carecantwait (also check out ‏@sim89 Storify‬ compilation of early responses):
‏

@ageuklondon Though it contains some good ideas, the #carewhitepaper doesn’t go far enough. The problem of care will not go away and is getting worse!
‏@Sensetweets Deafblind people continue to be abandoned, as funding fails to materialise – our response to the #carewhitepaper
‏@TonyButcher #carewhitepaper – like excitedly looking forward to your birthday but then only getting a cheap pair of Primark socks – disappointing
‏@gary_rae If this is a “watershed moment” for #ukcare then we’re clearly drowning. #carecantwait #dilnot
‏@Marc_Bush Care crisis demanded decisive action. Today we got a holding statement…’ @scope rspnd 2 @DHgovuk ‪#carewhitepaper‬ http://tiny.cc/scopetocare
‏@WoodClaudia focus on deferred payments in ‪#carewhitepaper‬ due to absence of other funding ideas. It is option for some, not THE solution being proposed
@Ermintrude2 Disappointed that headlines about #carewhitepaper all seem to concentrate on selling houses to pay for care. System about so much more.

Disability, Health, Local government, Social care, Third sector, Uncategorized

“People aren’t cases, they’re individuals”

Debbie Walker is “a guardian angel”, according to Julie Mason, whose 86-year-old mother, Elizabeth, has Alzheimer’s.

Two years ago, when Walker, a Sheffield Council care manager, met them, Elizabeth’s care involved daily agency staff plus Julie and her sister as unpaid carers. The family felt Elizabeth lacked choice and control, spent a lot of time with nothing to do and had little social interaction. Read the rest of my piece on how one council is letting external organisations lead on support planning on the Community Care website.

A support planning session at Sheffield city council (pic: Sheffield city council)
Health, media & communication, Music & arts, Uncategorized, Young people

The science of the sofa

Artist Michael Pinsky launches Fidget (pic: Geoff Caddick/PA)
Is there a science to sitting on the sofa? Any benefit to being on your backside? An art to sitting on your arse? An innovative new project by one of the country’s leading artists blends science and art in a bid to persuade the public that there is, sparking debate about obesity, activity, exercise and health along the way.

Comedienne Katy Brand helps launche Fidget (pic: Geoff Caddick/PA)

Launched in King’s Cross yesterday to capitalise on the Olympics (which many of us will sit around watching, doing very little exercise) the pop up Fidget campaign promises an “interactive canopy housing an arts experience”, created by renowned British artist Michael Pinsky.

Six “game zones” under the canopy encourage people to try simple activities for themselves and learn about the difference that moderate movement can make. On average, people spend about four hours a day watching television.

Dr Wilby Williamson, who has been involved in the development of Fidget (pic: Geoff Caddick/PA)

Run by London Arts in Health Forum and funded and supported by the Wellcome Trust, the project runs for a year, touring London before a nationwide tour of festivals, public spaces and other events this summer including Skegness, Edinburgh, Bradford, Bristol, Taunton, Gateshead and London Broadgate (see website for more details). There will also be interactive online communication tools developed by online charity YouthNet, which support young people online.

Health, Private sector, Sustainability, Third sector, Wellbeing

Making social impact integral to business

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When women in Haiti added fruit flavouring to purified water and sold it to their peers, an impromptu community business was born. While the main aim was a health-related one – the women used purifying sachets distributed after the 2010 earthquake to clean the water – the unforeseen knock-on effect involved women educating their peers about not drinking contaminated water and running their own mini-enterprise. Read the rest of my piece on the Guardian Sustainable Business network.

Disability, Health, Mental health, Music & arts, Olympics

Art fights social taboos

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Living with chronic health problems and facing social taboos are issues at the heart of an international artistic collaboration about HIV/AIDS as part of the Cultural Olympiad.

Portrait by Rachel Gadsen © Rachel Gadsden

© Rachel Gadsden

The powerful images here are part of the Unlimited Global Alchemy project
which launches today as part of the London 2012 Festival. After today’s launch at the Museum of Archaeology & Anthropology in Cambridge, the exhibition culminates at the Southbank Centre during the Paralympic Games.

The project has been produced by Artsadmin and commissioned by the Unlimited programme launched to celebrate arts, culture and sport by deaf and disabled people.

© Rachel Gadsden

Artist Rachel Gadsden, who has lived with disability all her life and whose inspiring work I came across last year, began the project after seeing the work of South African artist Nondumiso Hlwele at the museum in Cambridge – Body Map, below, reflects Hlwele’s experience of living with HIV.

Body Map © Nondumiso Hlwele

Gadsen travelled to the Khayelitsha Township, Cape Town, pictured below, to collaborate with the artist-activist collective which Hlwele leads. The works in today’s exhibition were created over a six week residency in Cape Town in October last year.

Khayelitsha township where today's works were developed

Together, the striking pieces show what it’s like to live with disabling conditions and social prejudice. “At the heart of this life-affirming and timely collaboration is a celebration of survival against the odds,” say the artists. “It is also about access to art in a very broad sense, participation, and the potential for bridges to be built across cultural, educational and geographical divides.”

You can follow the project on Twitter with the hashtag 
#UGAlchemy and the exhibition is at the Museum of Archaeology & Anthropology in Cambridge until 18 August before it transfers to the Southbank Centre, London in September as part of the Unlimited Festival. There will also be a collaborative performance work once the project transfers to the Southbank.

Health, Housing, Third sector, Uncategorized, Women

I never imagined I’d be selling my body for drugs

Vulnerable women are the focus of charity St Mungo's new campaign

“I never imagined in a million years I’d be selling my body for drugs…I’m still doing it now… I’ve nearly been killed three times doing [prostitution]. I’ve been raped doing it.. as a result of that I got HIV doing it. But it’s easy money.”

These words belong to Angela (not her real name), 38, speaking to homelessness charity St Mungo’s (you can hear more from her on the St Mungo’s website here).

Her story highlights some of the particular issues homeless women are known to face more than their vulnerable male counterparts – prostitution and domestic violence, for example – which the charity is focusing on during its action week this week.

The week kick starts St Mungo’s new campaign, Rebuilding Shattered Lives, the aim of which is to give a platform to best practice and innovation relating to supporting homeless and vulnerable women.

Traditionally, homelessness services were designed with men in mind but in England over half of those living in temporary accommodation are women and a quarter of St Mungo’s 1,700 residents are women. Until just three years ago, women fleeing an abusive relationship were deemed intentionally homeless (and so didn’t have housing rights) and encouraged to return home.

Housing and homelessness campaigners have long argued for more attention to be paid to women and homelessness (a 2006 report from housing charity Crisis still makes for stark reading) given there can be additional factors in their lives which might push them into homelessness – domestic violence and abuse, for example. The true nature of women’s housing need can also be hidden as they opt to stay with friends or sofa surf between spells of rough sleeping. While they can access mixed housing, as opposed to female-only hostels, for example, there is an argument to say that that more widespread female-specifc, housing-related support would make recovery easier.

St Mungo’s 18 month-long campaign invites organisations, frontline staff and female service users themselves to contribute ideas on preventing women’s homelessness and supporting recovery. Campaign themes including childhood trauma and domestic violence, as well as educational and employment opportunities, and restoring links with families and children.

A recent survey of St Mungo’s female residents concluded that more than a third who slept rough say their experience of domestic violence directly led to their homelessness while almost half are mothers. More than one in 10 have a history of being in care.

It’s worth noting that, as well as the stories like Angela, there are other examples in the St Mungo’s campaign of how, with the right support, women have started to turn their lives around.

“Mel”, for example, was living and working on the streets for two and a half years before coming in. She told St Mungo’s staff: “I’ve never had any stability. I don’t get on with my family, I’ve always been around drugs and getting clean when you are around other users is difficult. But I’m getting there, slowly…When I moved in here a year and a half ago I was a mess and I just slept, catching up you know. Then I turned things around, turned daytime into time for ‘doing stuff’ and nighttimes for sleeping.”

She added: “To get your benefits and all that you need to get to appointments, you have to get out of bed and you need the right help. That’s what I got here, though it took me a while to adjust, to get my head stable. What you need is people taking you seriously, people listening to what you want. What people need to understand is that just because you don’t comply with their ‘rules’, don’t turn up or whatever doesn’t mean ‘give up on them’.”

As the campaign develops, it will be interesting to see what ideas and services for women like Angela and Mel are showcased and what changes, if any, the charity’s follow up surveys reveal about an issue that has only comparatively recently been given a specific focus.

Education, Employment, Social exclusion, Young people

Caring and learning: the knowledge gap

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As the 17-year-old unpaid carer of a mother with mental health issues, Holly is often asked – by her peers as well as by professionals – about the particular challenges of having a caring responsibility: “When I have tried to explain my situation, the questions have been, ‘Are you homeless? Are you on drugs? Are you being abused? Well things aren’t too bad then’.”

The reaction she often gets shows the low profile and lack of awareness about the particular challenges facing young adult carers. There are thought to be around 230,000 self-declared young adult carers between the ages of 16-25 in the UK but the figure could be much higher because stigma means many do not talk about their caring responsibilities.

Holly’s story is among the testimonies in a new report published today, Voices of young adult carers, stories of young adult carers’ experiences of caring and learning, to mark the start of Carers Week. The week-long drive raises awareness of the contribution the UK’s six million unpaid carers – as reported today, 40% of carers are put off seeking medical treatment because of the pressure of their caring responsibility.

The report that Holly contributed to comes from NIACE (the National Institute of Adult Continuing Education) and highlights the impact of caring on learning. Today’s publication focuses on young adult carers, young people aged 16–25.

Holly was 10 when she realised “my family did not function or behave the same as my friends’ families did”. Her mother rarely left the house, her brother often got into trouble with the police and her parents’ marriage eventually broke up. Referred to her local young carers service by a social worker, she lived part-time between her parents, moving eight times in almost as many years.

As the NIACE report shows, caring leaves young people with little space for school or college, let alone a social life or thinking about their adults futures. As well as having their education disrupted, it is hard for young adult carers to fit apprenticeships or work around caring.

As Holly explains in the report: “The house moves and disruption caused me to change college education halfway through and move to another college. Whilst at a continuous secondary school I was able to find support and the staff were genuine and made good links to my parents, always making sure I had opportunities. Staff even went out of their way to give me a lift home after any outside school activities, especially in the dark winter months. I achieved to my ability and started college where I built up good relationships with tutors. However, on my move to the college 70 miles away I had to restart the course, and although I tried to tell staff about my issues, I was left isolated and have fallen behind in my studies.”

Historically, provision has mainly focused on carers under-18, or adult carers and while NIACE says this is changing, there is still an awareness gap when it comes to knowledge about young adult carers. The situation is not helped because young people like Holly can find it hard to ask for help which, as today’s report suggests, adds to their difficulties with problems such as isolation, frustration, low aspirations and anxiety and behavioural problems. As well as the impact on the individual, there is an obvious knock-on effect on communities and the economy.

Recently, Holly’s mother has suddenly moved again, back to the area the family originally lived in and the teenager has, once more, started the process of changing college.

* More information on NIACE’s work on young adult carers, including resources to support learning providers in their work with young adult carers, is here.

Learning disability, Music & arts

Happy art

Here’s something that raised a smile – if you watch one teeny thing today (it’s 48 seconds long), please make it this fabulous mini-montage of Joe Long’s happy drawings set perfectly to a priceless tune.

Joe, 18, has fragile x syndrome, the same condition as my sister Raana, and is at the Sheiling School in the New Forest, next door to the Camphill Lantern Community which my sister is at. A big part of Sheiling and the Lantern is creative expression, which Joe clearly has in bucket loads.

Next week is Learning Disability Week, which will focus on hate crime. That I’m sharing Joe’s feel good film here is not to pretend that people like my sister and Joe aren’t on the receiving end of some of the worst misunderstanding in society, from sideways glances to outright physical and verbal abuse and discrimination – this is what next’s week’s awareness campaign hopes to tackle.

I’m sharing it because it’s infectiously positive, reminds me of my sister’s own drawings at that age and reveals Joe’s upbeat personality as well as reflecting the abilities of young people with disabilities.

And, of course, it simply made me smile.

Joe’s father Adam says his son, who was 13 when he did these drawings, was always proud to show off his art to “anyone and everyone”, so the family decided to post some of his best sketches on YouTube where they’d reach a wider audience.

Adam says the sketches show Joe’s family (including his parents and sister Tilly) as well as “himself, our cat Monty, and some animal with lines coming out of its mouth…possibly our guinea pig, don’t know for sure…Looking at the drawings always made me smile”

Joe’s thriving and happy at Sheiling, says Adam: “He’s got a lot of friends, he’s learning, becoming more independent, and we’re very proud of him.”

Joe, for your happy artistry and for creating this feel good Friday post, we salute you.

Employment, Social care, Social exclusion, Uncategorized, Young people

Dads and disability

Zach and his father Kevin, who took part in research about fathers of disabled children published today, Dad & Me.
Imagine feeling under pressure to keep your child a secret from your employer. Imagine, at the other extreme, being abandoned by your friends for focusing too much on the needs of that child. What about if you felt you didn’t fully understand your son or daughter’s abilities, or felt so isolated and condemned to a life of hopelessness that you worry the stress is affecting your health or relationship?

This is the reality facing many fathers of disabled children, according to new research published today among 500 dads carried out by disability charity Scope and online community Netbuddy.

As one father told researchers during the survey carried out in April: “My friends have abandoned me because they don’t understand why I have to care for my child so much. And I know she won’t ever get better….My career, once promising to put me at number one in the world at my specialist area, is now going nowhere as permanent exhaustion means that talking intelligibly is a major achievement. But I love and care for my child. It isn’t her fault.”

The research, Dad & Me, aims to raise awareness about the role of male carers; while an estimated 5% of the population are carer dads, so far there has been little research into their experiences.

Today’s findings suggest that:
• 15% of dads keep their child a secret from their employers
• 40% do not fully understand their child’s disability (“Medical appointments are usually in the day and I cannot always get time off work to attend…this leaves me with less first-hand knowledge of what my daughter’s autism means and makes me feel inadequate.”)
• 72% say caring for a disabled son or daughter has affected their relationship with the partner with stress and tiredness among the causes
• 61% think mums are treated differently from dads

Deborah Gundle, Netbuddy founder and mum to Zach who has Angelman syndrome (pictured with his dad above), says: “We wanted to highlight the important role that dad carers have, but to realise the extent of the problems dads are facing has been overwhelming. Even I had not considered the extent of dads’ involvement – both emotionally and practically – and it is commonly the case that mothers are assumed to take all the responsibilities of caring on board.”

Dads feel marginalised as carers as the common view is that women cope better in the home, are listened to more and given more support and sympathy while the role of the father is to support the family financially.

As Richard Hawkes, chief executive of Scope, explains: “This survey shows that everyone involved in supporting families’ needs look long and hard at what can be done to support dads to play a part in caring for their children.” Hawkes argues that if the government is truly to create the family-friendly society it wants, it needs to do more to promote flexible working to support family relationships and finances. Scope also has a support group for fathers, which it hopes to expand.

The fathers in the survey suggest improvements which could help support them in their role as dad carers such as appointments outside working hours, specific help and advice sessions for dads and more employer awareness. Like all parents and siblings of disabled children, they also argue that better social integration – more opportunities for children to integrate with others in their age group in “everyday” social situations – would help.

While in theory parents of disabled children have a right to ask their employers for convenient hours and employers must seriously consider this as an option, there is a gap with reality, according to dads who took part in today’s survey.

Netbuddy has also recently launched a new forum for dads.

James’ story
James is a father to eight-year-old twins Thomas and Alice, who both have dystonic quadriplegic cerebral palsy, and to baby India. A PR consultant, he leaves the house at 6am and returns at 8pm, when his carer role kicks in. “Holding down a demanding job and being a carer can be a stretch at times,” he says. “I’m lucky enough to have a very understanding team of colleagues, but I do worry for dads who get held back in their careers because their employers feel they already have enough on their plate. People are sometimes denied opportunities to move up the ladder.”

James says most people assume that because he works, his wife does all the caring. The dual demands of work and the additional needs of his children means there is precious little time is left James and his wife to be together as a couple. “We have very little time to be together on our own and the pressures of caring for our twins and sleeplessness do take their toll. However, it has had a positive effect too – in building a strong bond through the difficult times we face.”

James would like to see more support for dads in terms of out of working day appointments and extra support services. “All support is during the working day so it’s not accessible for working dads. Asking for support as a father can be seen to be a weakness and a sign that we are not coping. There isn’t enough support or help available to us – and this is essential so that we can provide the best possible care when looking after our loved ones.”

Cuts, Learning disability, Social care, Third sector, Uncategorized

Cuts: do the right maths

I had to share the infographic below from learning disability charity United Response which, if you’ve not already seen it, lays bare the impact of cuts to disability living allowance (DLA), the benefit that helps people with care and mobility costs.

Compare these stark sums to Ian Duncan Smith’s much-criticised claims that the number of people claiming DLA had risen by 30% in recent years and its cost will soon soar to around £13bn a year.

Not that a war of figures is the thing here; as shocking as the total numbers below are, the persuasive argument against the cuts is the individual stories of the difference this vital benefit makes to people’s lives and what will happen if it is cut. It’s easy for politicians to bat percentages and pound signs back and forth (and fudge the facts and stats, as the Spartacus report suggested earlier this year); it is harder to ignore the personal stories of how reform will make life even more difficult for those who are already vulnerable.

As Rob, a wheelchair-user who has multiple sclerosis, commented in a blogpost on the Voluntary Organisations Disability Group (VODG) website (I manage the group’s blog), DLA allows him to be more independent: “Whilst it isn’t always easy, I think you have to make the most of life. The DLA enables that life to be a better one.”

Take a look at the figures:

How the cuts to Disability Living Allowance will affect disabled people