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.
There’ll be more from the bakers of Camphill on this blog in the next week or so – they really are an inspiring, welcoming and talented bunch of people and work in what has to be one of the buzziest bakeries I’ve ever been to (listen to the audio slideshow – especially my sister’s numerous interjections – and you’ll see what I mean..).
For now, however, the slideshow photographs and the words of the bakers themselves speak volumes and do a better job than I could in a long piece of writing to reflect the bakery’s ethos and prove why schemes like this are so vital. Plus they make the most amazing things so, I’d like leave the last word to my sister, “ahhh the whiff of that bread!”
Parenting, at the best of times, can be as difficult as it is rewarding, but what happens if what you take to be your religious values muddy the water when it comes to raising your family? If you’re brought up thinking your religion bans any talk about sex, what do you do when your child asks where babies come from?
This kind of question was at the nub of a recent course for Muslim parents – Islamic Values and the Parenting Puzzle – I reported on. Some of the cultural “learnings” that were mistaken as religious teaching included issues such as not talking about sex or ignoring the child’s opinion about family matters.
The course stems from the work of a very forward thinking family practitioner called Arifa Naeem. Naeem used an established course devised by the charity Family Links, which trains parenting support workers, and added extracts from the Qur’an and the Prophet Mohammad’s sayings.Family Links now employs Naeem
One concern among parents is how to reconcile western values and life with their religious or cultural upbringing. The course, as Naeem says, supports parents towards adopting positive practices consistent with Islamic religious values, helping them be “good Muslim British citizens”.
Although I did the story before the murder of Lee Rigby and the ensuing reports about a rise in Islamaphobia, anyone with any assumptions about Islam and Muslims would do well to listen to the words of the many mothers on the course, with their unanimous aim of raising “good Muslim British citizens” and reconciling their eastern heritage with their western context.
I’d like to thank the women, like Ifat, who shared their family stories and their time:
Ifat Nisa feared her teenage son was hanging out with “the wrong crowd”, drinking, smoking or experimenting with drugs – but when she questioned him, they always argued.
Brought up not to challenge her own parents, Nisa was confused about how to parent an apparently disrespectful teenager. She heard about a parenting course at her mosque in Slough, Berkshire, and despite initially dismissing it – “My reaction was ‘it’s not Islamic'” – when she discovered it was tailored for Muslim parents, decided to try it out.
Nisa recalls: “I was worrying I wasn’t a good parent. I was confused why my son was reacting like he did; the course helped me understand his emotions and feelings.” Nisa learned about empathy and stopped blaming and constantly questioning her son. She credits the course for their strong, healthy relationship now.
“Disabled people in residential care who want to live more independently are being prevented from doing so by funding wrangles between local authorities” – that’s taken from a piece I wrote three years ago, but since then little has changed.
“Caught in a trap: disabled people can’t move out of care”, The Guardian October 2010
Here’s the mess: an individual’s “ordinary residence” is usually in his or her original local authority area, so if a council places someone in residential care outside the area, it remains financially responsible.
But when someone decides to move from that residential care in the new area into supported accommodation within the same (ie “new”) area, their original authority argues that it is no longer responsible for funding. However, the new authority – where the person actually lives – argues against funding someone not originally from the area. The result – limbo.
Confusing? Not really, what it boils down to is that councils are passing the buck over people’s care, effectively dictating where people should live -and all the while, individuals themselves appear to have no say. And quibbling over the care bill will only get worse as local authority cuts continue to bite.
I’ve been involved in a piece of work published today by social care organisation Voluntary Organisations Disability Group. The VODG has previously demanded action to resolve such ordinary residence dilemmas and, this time, it argues that the Care Bill offers ample opportunity to finally tackle the challenge. The new briefing, Ordinary residence, extraordinary mess, is available from the VODG website, with this post outlining how the situation has become “business as usual” in many areas.
One way forward, which the bill could accommodate, is strengthening the duty on local authorities to cooperate with providers and with each other to prevent delays in funding when people want to move from one care setting to another. The Epilepsy Society, for example, which contributed to today’s publication, estimates that in the last three years it has covered gaps in fees totalling £350,000 and “staff time involved in chasing fees over the same period has amounted to approximate 340 days across all departments including senior and service managers, finance and administrative staff”.
Here’s just one story from today’s publication, from a social care provider in central England: “Joe moved out of residential care into supported living accommodation nearby, run by the same charity provider. Council A, where Joe is now ordinarily resident, is refusing to take over funding from Council B which had previously paid his out of county residential care fees. Some 14 months later, the social care provider (a medium sized charity) is owed nearly £50,000 from Council A for this one client. Members of the charity’s finance team chase Council A each week and include copies of previous correspondence and agreements. Council A continues to delay payments, giving the provider different reasons for not paying and passes the query around different council departments. The charity has continued to provide care and covered this gap in fees.”
While the powers-that-be seem unwilling to either acknowledge the scale of the problem or indeed have the confidence to untangle the mess, vulnerable people across the country remain in limbo, unable to move to the place of their choice because of bureaucratic wrangles.
As Anna McNaughton’s mother told me three years ago: “All Anna wants is to live in a suitable home – it’s a basic human need, not a luxury.” It’s a desperate situation that three years on, her words still have the same resonance.
Jenny Dimmock at work in the pathology lab (pic: Positive Negatives)Jenny Dimmock works in a pathology lab. She and her scientist colleagues handle between 3,000-4,000 blood samples a day. The 21-year-old is also an ambassador for younger students, speaking about her experiences at conferences, like how part of her job involves placing specimens on a robot. Handling the robot, however, as her workmates say, is probably the easiest part of her working life.
Jenny, who has Down’s syndrome, trained on the job with the Project Choice scheme at City Hospitals Sunderland NHS Foundation Trust before she won her paid post.
As colleagues point out, while she was learning about the intricacies of the path lab, she was also learning about everyday practicalities like getting to and from her job on time or how to interact in the workplace. This week, her achievements are recognised with an award to celebrate Adult Learners’ Week this week.
We are more used to hearing about the failings of the NHS when it comes to its treatment of people with a learning disability. Only today the NHS ombudsman outlined the catalogue of mistakes which contributed to the death of Tina Papalabropoulos, a young woman with physical and learning disabilities.
In March, the government’s Confidential Inquiry into premature deaths of people with learning disabilities found that 37% of deaths of people with a learning disability who died between 1 June 2010 and 31 May 2012 in the South West of England were avoidable. Put bluntly, patients with a learning disability died whilst they were supposed to be receiving treatment from the NHS.
If attitudes are to change among organisations which fail the vulnerable, one way forward is to make them more inclusive as employers so they reflect individuals from all walks of life. It’s one thing to stick up a learning disability awareness sign to help staff recognise vulnerable patients – as I spotted in my local hospital (it’s a good start) – but it’s entirely another to have people with learning disabilities on your radar as potential work experience students, interns or trainees.
Public sector organisations especially are encouraged to be more inclusive and diverse through their board membership and recruitment policies, with the Equality Act binding organisations to develop a more diverse workforce and uphold equal rights. But people with learning disabilities are one of most overlooked groups in the labour market with most employers unaware of – or perhaps put off by – the kind of support that learning disabled employees might need.
As Mencap points out in its campaigning material, people with a learning disability are more excluded from the workplace than any other group of disabled people. According to Mencap, less than one in five people with a learning disability work (compared with one in two disabled people in general), but at least 65% of people with a learning disability want to work. Of those people with a learning disability that do work, most only work part time and are low paid. Just one in three people with a learning disability take part in education and/or training.
Project Choice in Sunderland shows what can happen when employers take a more inclusive approach to recruitment and training. The scheme aims to provide work-based learning and experience for young people with learning disabilities.
The project starts with 16-21-year olds doing half a day a week work experience for six weeks. Students have one to one sessions with a mentor to help develop an understanding of the world of work. Next is an unpaid internship for four days a week in a work place and one day in college. Students, who can have up to three placements in the year, again have a named mentor and progress to working independently. Learning is reinforced in the classroom and interns undertake a work qualification like a Foundation Learning Programme or NVQ.
The final part of the scheme is, hopefully, an apprenticeship, job – as Jenny has proved – or further learning.
Jenny started with work experience under Project Choice and did an internship in 2010 when she left school. She spent a year as an intern in three departments: on a clinical ward where, among other things, she used her sign language skills to communicate with deaf patients, then in the hospital pharmacy and in the laboratory. She learnt on the job but also had one day a week at college learning about things like employment health and safety. As she says, “I have had amazing times since starting my work experience and have fulfilled my ambition of getting a permanent job.”
Project Choice isn’t, of course, the only supported employment scheme of its kind but it’s a pathway to work and training in a sector not usually open to people with learning disabilities. It’s the kind of scheme that can change attitudes both within healthcare and in wider society. We just need more like it.
* New figures released for Adult Learners’ Week, which ends on Friday, showed that the proportion of young people aged 17 – 24 taking part in learning has fallen by seven percentage points in the last year. There has also been a fall of six percentage points in the proportion of unemployed people participating in learning. The survey for NIACE interviewed 5,253 adults, aged 17 and over, in the UK 13 February–3 March 2013.
Julie Heightley was so worried about her son Thomas suffering an epileptic fit at night that for two years she slept on a camp bed outside his room. The broken sleep and constant supervision of Thomas, who has autism and global developmental delay, was adversely affecting both Julie’s role as a carer and any prospect of independence for her son.
Now, thanks to a discrete network of wireless sensors dotted around the four-bedroom family home just outside Wolverhampton, Julie and Thomas, now five, are enjoying what Julie calls “a new lease of life”. Since the home was kitted out with the assistive technology two years ago, Thomas has been able to safely play and walk about the house independently without needing his mother’s 24-hours-a-day supervision. As well as having a slightly more hands-off approach to her five-year-old, Julie, a lone parent, has more time to spend her two older children who are in their teens.
Julie and Thomas with his older siblings
Assistive – or personalised – technology includes a wide-range of supportive but unobtrusive services and equipment, from personal alarms for elderly people, to seizure monitors and more sophisticated fingerprint recognition systems that allow you to open the door without keys. It can also include computer software, hand held devices or video call systems that increase social interaction and family contact.
As fans of such services and systems point out, the traditional view of this technology is that it involves a medical and prescriptive approach (see the comments on the related VODG blogpost), but the key issue is to bring it to the consumer market, widen its use among the general public and raise awareness about its potential.
As the publication stresses, the social care sector has embraced a huge amount of innovation in assistive technology, using new methods to complement the physical work of support staff. it is transforming lives for the better. But the use of such services, systems and equipment does not enjoy the higher profile of our counterparts in the health sector, despite the fact it is entirely in line with the “person-centred” approach that care providers are working towards and encourages choice, control and independence – social care watchwords.
Today’s report, with its real life stories of how technology is transforming the lives of vulnerable people, aims to change that: “Put simply, technology is part of our modern landscape. We use it for work, leisure, at home and on the move. It makes our lives easier. People with life-long disabilities or age related conditions should share that experience, benefitting from the advantages that tailor-made technological support can bring.”
Stanley Holes is, says his little brother Albie in the brief video diary above, simply “the best brother I could ever have.” Albie’s love for his 16-year-old brother is reflected in this short film which I just watched and wanted to share. Produced for Autism Wessex, the charity that supports Stanley, it stands out for me because it’s presented from a sibling’s perspective: “I love him very much,” says 11-year-old Albie of his teenage brother, “and he is very important to me and my family.”
Diagnosed with autism at three, with no speech and, as Albie says, “little understanding of the world that surrounds him”, Stanley hadn’t been to an autism-specifc setting until last year when he started Autism Wessex’s Portfield School in Dorset. Underlining the vital need for autism-specific support, only now is Stanley receiving proper speech and language therapy – and he’s thriving on the specialist care and education. In one of the previous schools he was at, his family was told that as Stanley was autistic, there was no point in him getting speech therapy since his condition made communication impossible.
Stanley was regarded as a child whose behaviour challenges, his complex needs mean he is prone to anger and violent outbursts (“episodes”, as Albie explains in the film). Yet his story shows that even in complex cases, positive outcomes are possible.
Stanley has started to shows more awareness of his surroundings, and is becoming more independent, using signing with more confidence. Younger brother Albie, meanwhile, is more assured about talking to people about his older brother and how autism affects him and his family’s life.
Stanley’s family realised after a few short months that he seemed much happier at his new school compared to previous special needs environments; as Albie says in the film, “It’s important for me to know that while I’m having fun, Stanley is having a great time too.”
Stanley is a weekly boarder at Portfield, coming home for the weekend, where Albie his parents, plus fellow siblings Mabel, 15, and Elsie, 7, are keen to spend time with him. Before starting at the school, as their father Paul says, Stanley’s behaviour was having an adverse impact on his siblings. Now, says Paul, the change in the family dynamic and in Stanley is “the difference between living and existing”.
Head of David Rushbrook, James Lake’s sculpture of the baritone
One glance at James Lake’s giant 3D portrait of baritone David Rushbrook, and you may never look at a cardboard box the same way again.
Lake’s showstopping sculpture, created through the painstaking layering of cardboard, is intended to move, sing and perform alongside the other performers on stage (the head has already featured alongside the opera singer in Glyndebourne).
As the artist explains on his website, he chose the “inexpensive, commonplace and recyclable” medium because he “wanted to sculpt beyond the traditional materials and without the need of an arts studio”. Lake’s right leg was amputated after bone cancer at the age of 17 and his work focuses on humanity, strength, and vulnerability. His aim is to create work that breaks down the barriers in the art world.
The giant piece of Rushbrook, who has a learning disability, is just one big reason to visit Shape Arts‘ pop up multimedia gallery in London, Shape in the City, which is now open until May. The disability-led arts charity works to improve access to culture for disabled people and Lake is one of 30 disabled or deaf artists featured over five floors and 60,000 feet of exhibition space.
Lake’s 3D work head is shown alongside prints, paintings, film and video, poetry, performance art and installations. The showcase features established as well as up and coming artists plus pieces from the London 2012 Cultural Olympiad programme: ‘Unlimited’.
Here’s a bit more information about three other pieces on display:
Sitting Without Purpose’, James Lake’s depiction of his father
Lake’s life-size Sitting without Purpose depicts his father during redundancy, aiming to reflect a man contemplating the challenges of life.
Noemi Lakmaier paints 500 pairs of shoes in paint used used to mark accessible parking bays
Visitors to the exhibition can watch Noemi Lakmaier live or via webcam painting 500 pairs of shoes in the kind of paint used to mark accessible parking bays in homage to her 2008 piece Experiment in Happiness. Lakmaier’s work explores ideas of the “other”, such as how the individual relates to surroundings and identity. By the time the pop up gallery closes, it will be filled with hundreds of painted shoes.
Chrisopher Sacre’s ‘See What This Man Gave Birth to After Using 2000 Condoms in 22 Days’
Chrisopher Sacre‘s artistic epiphany, as he himself has said,”may have arrived in an unexpected form” – but his work has been transformed since discovering “a happy marriage between condoms and plaster”.
* Shape in the City, in partnership with Photovoice and Action Space, 40 Gracechurch Street, London, EC3V 0BT, 10:00am to 2:00pm. For more information email popupgallery@shapearts.org.uk
Good to see a nod to the blog on the Guardian Select pages this morning, especially when the page featured is from the Bound exhibition about disability issues. A reminder of the point of this site: “It champions the good stuff going on in terms of support, much of it small unsung hero-type projects, which is important at a time that so many charities and support schemes are losing funding.” Read more here.
The Fabulous Raana Salman
What does “puck off” mean, you asked,
When a playground jibe you misheard,
It’s an insult, we said, with a bittersweet laugh,
And “puck” is quite a rude word.
You’re older now, and more in the know,
And you’re still just brilliantly funny,
We love how you call my other half “bro”,
And our mother is always called “mummies!”
You constantly amaze us with all that you do,
You garden, you cook and you bake,
You’re a music fan who likes her tunes loud,
Full volume – bloody early – at dawn break.
You love Chinese food and movie nights in,
And sometimes the pub if it’s near,
Remember your fury when we ordered you juice,
And you indignantly cried: “I want beer!”
“You’re fried!” you shout, knowingly wrong,
After watching The Apprentice on telly,
You say it when angry or to make us smile,
And it shows you’ve fire in your belly.
You’re creative and busy and do stuff we can’t,
You’ve woven and painted and grown,
I love having you stay so you’re able to see
How your art brightens up my home.
You’re thoughtful with gifts, matching present to person,
(You know I like peppermint tea)
We joke how “mummies” foots the bill sometimes,
And you say of your gifts: “They’re for free!”
You love baggy sweatshirts, they comfort and cloak,
You categorically refuse a posh frock,
You know your own mind, you’re fabulous and kind,
And basically Raans, you rock.
* The film Mission to Lars will be released on 8 April, with proceeds going to Mencap to help support people with a learning disability and their families. The film follows Tom Spicer who has Fragile X syndrome, a form of autism. He has a dream to meet his hero – Lars Ulrich – and his sister Kate tries to make that happen.
Young people who have helped transform their neighbourhoods despite are among those being celebrated in today’s Prince’s Trust annual awards.
Amid recent figures showing youth unemployment has nearly hit 1m, it is inspiring to hear how teenagers and young adults are determinedly pursuing work, training or volunteering, despite the kinds of experiences that would lead some to write them off as “hard to reach”.
The trust’s Celebrate Success event honours young people who, supported by one of the trust’s many programmes, have overcome challenges like homelessness or unemployment to make a difference to their communities or to the lives of others.
The community impact award in particular (there are various categories in today’s awards) recognises how young people around the country have breathed new life into a neglected area of a block of flats, launched a support scheme for young carers and turned a disused part of a children’s centre into a a play space. While their projects might not have led all of them into full-time employment, many are on a more secure path to independence.
Young people in Glasgow transformed a disused space in Helenvale Flats (photo: Prince’s Trust)
A group of eight unemployed young people, supported by the Prince’s Trust Get Started programme, revitalised an area in a block of flats in the deprived east end of Glasgow. They created flower beds and benches, built a willow hut for children to play in and sprayed a giant snakes and ladders board on the ground.
The Caring Alone project helps support young carers.
Steven Bland was among the four young carers who created the Liverpool-based Caring Alone Support Service, backed by a cash award from the trust, for a Community Cash Award. They matched the funding with support from other organisations launched the online support support for young carers, offering advice and a forum for information exchange.
A team of young people from Birmingham helped improve Fox Hollies children’s centre .
While participating in the Prince’s Trust Team programme, 10 young people made a disused outdoor space at the Fox Hollies children’s centre in Birmingham into a beach play area. They raised the cash through donations from local businesses and activities including bag packs and car washes.
