Tag Archives: learning disability

Cuts, Disability, Health, Housing, Learning disability, Local government, Older people, Social care, Uncategorized

Sticking plasters, surgery and spending reviews

July 11, 2012 Saba Salman

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”

July 9, 2012 Saba Salman

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)

Learning disability, Music & arts

Happy art

June 15, 2012 Saba Salman

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.

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

Cuts: do the right maths

May 22, 2012 Saba Salman

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:

money cuts infographic United Response — How the cuts to Disability Living Allowance will affect disabled people

Health, Learning disability, media & communication, Music & arts, Social exclusion, Third sector, Uncategorized, Wellbeing, Young people

Face the facts, not the film fiction

April 13, 2012 Saba Salman

It’s an uphill struggle for those with so-called invisible difficulties (people with conditions on the autistic spectrum, for example,) to achieve mainstream representation or indeed capture the attention of broadcasters, newspaper editors, politicians and the public.

So imagine the challenge for those with more visible differences.

If you see facial disfigurement in movies, its usually a handy hint just in case you have trouble figuring out the baddie (think Nightmare on Elm Street’s Freddie Kreuger and just about every Bond villain). Trying to see if I could disprove this theory, I randomly remembered Liam Neeson in Darkman – scarred, with a grudge, ultimately fighting for justice – but then looked up the tagline” “hideously scarred and mentally unstable scientist seeks revenge against the crooks who made him like that”. Ouch.

Movie memo to kids (they might not know Freddie Kreuger but you can be sure they know Batman’s The Joker or Harry Potter’s Voldemort): look bad on the outside, and you’re bad inside.

Today, Changing Faces, the charity for people and families whose lives are affected by appearance-altering conditions, marks or scars, launches a nationwide film campaign. Please watch it, it’s powerful, elegantly produced and only a minute long.

You might already have spotted the charity’s poster campaign not so long ago which aimed to stop people in their tracks long enough to make them think (instead of simply staring). Today’s Face Equality on Film campaign, it is hoped, will go some way towards tackling the prejudice and crass assumptions experienced by people with facial disfigurement.

The campaign calls for balanced portrayals of people with disfigurements on screen and the film, which will be shown in 750 Odeon cinemas, invites audiences to challenge their assumptions about Leo Gormley, a man with burn scars. It also stars Downton Abbey actor Michelle Dockery.

As a teenager in the ’80s, my first foray into the mind-boggling world of skincare and “beauty” products involved a desperate desire to cover barely perceptible blemishes, inspired by the seemingly zit-free stars on my Smash Hits front cover. But since, then the concept of “beauty” has become even more extreme, and digital wizardry can clear imperfections in the blink of a heavily-made-up eye.

I’m conscious that my seven-year-old daughter, for example, is growing up in a media environment dominated by images of identikit, airbrushed, photoshopped lovelies projecting an unobtainable and flawless version of “looking good”.

In a world where older women are elbowed off the television news because their faces, rather than their news judgement, start to sag, what hope for those whose features even further removed from what is deemed be aesthetically pleasing? Changing Faces has already worked with Channel Five news to shatter such stereotypes.

But if women, ethnic minorities and people with disabilities are under-represented in television, then people whose differences are more obvious are, ironically, even more invisible.

And if facial differences feature on television, they do so in a medical capacity, in documentaries that present abnormality as something to be gawped at or “put right”. While the concept behind The Undateables might have been well-intentioned, it was the title of the show that put me off.

As Changing Faces’ chief executive James Partridge said in response to that Channel 4 series: “TV series with derisory titles makes life just that bit more difficult – it’s so unnecessary and it’s unfair. Very good factual and sensitive documentaries on disfigurement-related topics are frequently spoiled by offensive titles such as ‘Freak show family’, ‘The man with tree trunks for legs’ and ‘Bodyshock’. They are contrived to attract audiences but actually label the human being in the film in a sensationalist and voyeuristic way, treating him or her as an object rather than a person.”

At the risk of getting sidetracked down this road, I remember gritting my teeth a few years ago to get past the utterly ludicrous title of The Strangest Village in Britain. It was, was in fact a sensitive portrayal of life at Camphill’s Botton village which featured much of the good support that has made a difference to my family’s life – not that you’d know that from the objectionable title.

Back to today’s campaign launch; a YouGov survey of 1,741 adults commissioned by the charity last month found that bad teeth, scars, burns and other conditions affecting the face are viewed as the most common indicators of an evil film character. According to the poll, ethnic minorities, bald and disabled people are all thought to be portrayed in more diverse ways than those with disfigurements.

Responding to the poll, 66% said people with bad teeth mainly play evil characters and 48% said that people with conditions altering their appearance mainly play evil characters. Meanwhile, 30% said that bald people mainly play evil such roles compared to 13% who felt those from ethnic minorities mainly portrayed bad characters. Interestingly, 6% said that people with physical disabilities (in a wheelchair or have missing limbs) mainly play evil characters.

Partridge adds of today’s campaign: “It would seem as if all the film industry has to do to depict evil and villainy is apply a scar or a prosthetic eye socket or remove a limb and every movie goer knows that it’s time to be suspicious, scared or repulsed…Freddie Krueger, Scarface and Two-Face are just some of the names that our clients get called at school, on the street and at work. They have to put up with people laughing at them, recoiling, running away or staring in disbelief that they can and do live a normal life.”

* You can sign the charity’s online petition demanding an end to the stigma reinforced on screen.

Learning disability, Music & arts, Uncategorized

All-embracing arts

March 14, 2012 Saba Salman

Some of the UK’s most inspiring performers are taking part in a two-day disability arts showcase that kicks off in Leicester tomorrow.

Embrace Create Connect, 15-16 March, is a national conference for performers with a learning disability and for those who work with people who have a learning disability.

CHOLLIS_04022_278 — Movers Theatre Company (pictured here performing The Sorting Office, 2009) feature in the two day arts extravaganza

The event, which takes place at Embrace Arts, Leicester University’s arts centre aims to share learning and present the huge and rich range of learning disability arts work, connecting performers, producers and promoters.

A scoping document for the event, Written by Andy Reeves, artistic director  of the Leicester-based Speakeasy Theatre Company (I featured the participatory arts company’s great work here) describes the East Midlands as “an interesting region in terms of performing arts and disability” because activity from the sector has learning disability, rather than physical disability, as its primary focus.

shadowdancer_1 — Anna Pearce and Hanna Sampson in Shadowed Voices, part of StopGAP Dance Company’s trainee programme

There’s tons of good stuff on the conference agenda. Performances include Heavy Load, StopGAP Dance Company, Club Soda and Movers Theatre Company. Other artists include Bamboozle and Salamanda Tandem.

Participants can get involved in workshops and debate with Action Space Mobile, DIY Theatre Company, Stay Up Late, Unanima, Oska Bright and more.

Tomorrow’s event is more positive movement in the field of inclusive arts. Events like this should help discourage the kinds of assumptions that leave many people with a learning disability excluded not just from the stage, but from the audience.

As Reeves acknowledges in his scoping report, while there is “a wealth of interesting learning disability practice happening nationally and regionally”, connecting up this kind of work “is much trickier”. Tomorrow’s unprecedented event will, buoyed by the strong vision of the companies and artists in the region, kickstart a learning disability performing arts network in the region.

Learning disability, media & communication, Young people

Netbuddy: the special needs Mumsnet

March 12, 2012 Saba Salman

Emma Sterland and her brother Ben — Netbuddy's Emma Sterland and her brother, Ben (pic: Netbuddy)

When Emma Sterland’s older brother Ben, who has Down’s syndrome, was three, their mother saw another child with Down’s walking past their Surrey house. Back then, in the late 1950s, learning disabled people were hidden away in institutional care, and it was the first time June had seen another child like Ben; she ran into the street to shouting: “I’ve got a son like that!”

In the absence of today’s official support networks, a lasting friendship began between the two mothers.

June could have done with Netbuddy, the self-styled “special needs Mumsnet” managed by her daughter, Emma. Just 18 months old, it crowdsources tips, attracting 6,000 new visitors a month and reaching 4,000 people a month via Facebook. Continue reading the rest of my piece on the Guardian’s social care network.

Netbuddy founder Deborah Gundle with her son Zach — Netbuddy founder Deborah Gundle and son, Zach (pic: Netbuddy)

Bullying, Education, Learning disability, media & communication, Social care, Social exclusion, Uncategorized, Young people

“Information about autism is better coming from someone who is autistic”

January 10, 2012 admin 1 Comment

USE Erica winner Simon — Simon after winning his award for public speaking on autism from learning disability charity Dimensions

By Simon Smith

My mum and dad realised something was different about me when I was about two to three-years-old, because I played differently to other children. I didn’t engage and interact with others. I didn’t cuddle or give eye contact. I had difficulties with speech and hated change.

I started realising from the age of 14-15 that people were treating me differently and this is when I first realised that I was different. At first I felt kind of annoyed about and wondered why I was getting all the attention. I then asked my mother what was going on with me. She told me I was different to the other kids. First of all she told me all the good things about me; such as my brilliant memory and amazing empathy with animals. She also explained why I was having difficulties in certain areas such as making friends and interacting .

I was diagnosed when I was five. I went to a mainstream school with a statement of special educational needs. At school had I one-to-one support, speech and language therapy. I also attended a behaviour unit and later on had support from the Autistic Spectrum Condition Support Services which came into my school to give advice and support.

Being autistic means I am someone who feels and sees the world in more detail then people without autism. I have heightened senses such as sight, taste, touch ,smell and hearing . This means that I can find things incredibly annoying that wouldn’t bother other people or in some cases it means that I find things more interesting.

Looking back, it was when I started school things became a huge challenge. People often thought I was a trouble-maker (mostly the teachers due to their lack of understanding of my autism and my behaviours). Other students often found me very strange and in some cases would be cruel; bullying me because I was different. Being treated badly by people who didn’t understand me made me very negative about my ambitions and myself which still affects me today. The other thing that makes me different is my obsessions, but I’ve used to help guide me through tough times and they have also created opportunities and brought me success, like the award.

At the moment I have no support except from my parents because the local authority says I don’t meet the criteria.

At the end of last year, I won an Erica Award from learning disability support organisation Dimensions for the talks I do about autism. The annual awards celebrate people with autism who help others. It’s nice to feel appreciated for the hard work I do. I’m very honoured by it and I still can’t believe I won it.

USE simon and rona — Simon, who loves animals, at home with Rona, the family's dog

My talks came about when my mum was working with pre-school children with autism so when one day she asked for some advice on how to support a child, it made me think back to when I was a child of the same age. I looked back on what made things hard for me and told my mum what it was like from my perceptive. I told mum what it was like for me being autistic and how it affected my everyday life.

My mum said she learnt so much more about autism from me that day that she thought it would be really helpful for other parents. She arranged for me to do a talk to the parents of other children like me.

My talks cover a lot of areas including sensory issues, how my brain works, how I learn to communicate and socialise, my repetition,imitation, obsessions and my behaviour issues. I also offer general advice and strategies to help support people and the opportunity to ask questions. I give out evaluation sheets so people can comment on my talk if they want me to add or change anything.

The feedback is amazing. One parent has written: “I got home yesterday and saw my son from a completely different perspective, thanks to your insight and inside knowledge of autism” and a professional commented: “Simon’s talk was super every trainee teacher/nursery/pre-school worker in the country should meet Simon and hear his experiences. I learnt more in one hour about autism that 20 years as a teacher have ever done. I feel very uplifted and look forward to sharing/reflecting to my colleagues.”

I feel happy that I am going to try and give advice which might help people that I’m talking too. Afterwards I feel mentally tired as it takes a lot out of me and I need feedback from people because I find it hard to tell how well I’ve done.

The feedback from my first talk made me want to help more parents, so my mum asked Amaze – an advice service for parents of children with special needs – if they could help. Through Amaze I did a talk to 27 parents. These parents requested that I spoke to the professionals that they have to deal with because they felt that they were often not listened to. So my mum arranged for me to do talks for professionals such as respite services, PRESENS (Pre-School SEN Services) and two local special schools. I do talks for professional services and parent support groups and have done two workshops at a conference.

It makes me feel uplifted to know how much people appreciate my talks, to be told how much of a difference I am making in helping them to understand more about autism from a personal perspective and this encourages me to do more. I believe that information about autism is better when it comes from someone who is autistic.

My plan is to do more talks and to encourage other people with autism to do them with me and to continue my mentoring. My biggest aim would be to form a group of people with autism who would be confident to be able to attend any meeting regarding anything that might affect people who have autism because I feel it’s very important to have individuals with the problems to speak out and have a voice.

I would like to make councils and governments have someone with the learning disabilities or someone with autism actually on board, attending meetings and giving their own personal input which I think we can all benefit from. If I could get the government to do one thing it would be to consult more with the people that experience the conditions that they are making policies about to get their points of view.

* Simon Smith, 23, from Brighton, won the 2011 Erica Award because of his outstanding contribution to helping others understand what it is like to experience autism.

The Social Issue

Tag Archives: learning disability

Happy art

All-embracing arts

Netbuddy: the special needs Mumsnet

Saba Salman on social affairs