When Parmi Dheensa’s son Callum kissed a classmate on the cheek not long after starting at a special needs primary school, a teacher asked his mother if this was “culturally appropriate”. Dheensa said that as long as the classmate was happy, nothing in her son’s Punjabi heritage forbade such displays of affection.
It is just one example over many years of professionals leaping to incorrect conclusions based on the ethnicity of her severely learning disabled son, who is now 19, says Dheensa. They also assume she does not work and is supported by an extended family when in fact she is a lone parent who works full-time. Dheensa, 43, was once told that her son’s support – he lives at home and is at a special school – was “better than it would be in India”. Fair point maybe, she says, but irrelevant to a British-born, Midlands-based family.
My Guardian article focuses on Parmi’s charity, Include Me Too, which works with 1,500 families a year. It has launched a campaign for the government to review its equality duties in relation to special needs education and support for BAME communities.
The charity has now launched a campaign asking the government to review BAME representation in government decision-making (existing involvement is, says Dheensa, “tokenistic”) and a new disability and equality strategy to ensure families get better support. The criticism is that professionals do not fully involve parents in reviews of the support they require, or in drawing up education, health and care plans, and parents or carer forums are predominately white British.
Guest post by Ross Hendry, chief executive of Spurgeons Children’s Charity
New research, which we launch today, paints a picture of far too many young families struggling.
Parents with children under the age of 18 are increasingly anxious, according to Spurgeons’ Parent Report, and many feel that there is little support available.
The research shows half of parents worry their children have low self-esteem or are unhappy (46%) or are being bullied (46%)*; whilst 42% of parents think there is little to no support available from statutory, community or voluntary services to help with family challenges.
And it is many of the most vulnerable who are struggling the most. The ones who cannot or do not have a strong, stable and supportive network of family and friends to turn to. These are the families we work with, day in, day out – their children are among the 4 million living in poverty in the UK today. They are the families for whom support seems very distant and hard to attain just when their needs seem to be increasing.
What’s important is that families get the support they need when they need it. And that’s where charities like ours come in. Spurgeons Children’s Charity is driven by its mission to improve the lives of families and children who are struggling to cope; and to see every child given the chance of a hope filled future.
It is 150 years since we were first founded, but we still work at the heart of communities to improve the life chances of some of the most vulnerable children and families in England. Our focus is supporting families who struggle to support themselves through intervention and help that centres on the child.
The reality is, despite the immense wealth and opportunities for social mobility, life for some families is as tough today as it was when we were first established. Inequality today may look different; we may know more about causes and solutions; we may spend more time talking and writing about it; but it is still an enduring social and economic scar on our society.
We offer a range of different services across the country. For example, our 23 children’s centres support parents with young children to access the help they need, ensuring poverty and deprivation don’t become barriers to a better future. We work with local partners in communities with high levels of deprivation across the UK, supporting parents and their children from pre-natal stage up to the age of five.
When parents need to develop new strategies for dealing with issues; or they feel they maybe aren’t coping as well as they could, our support worker teams are there. Sometimes just to listen; but often to provide practical support and advice too. There are a range of parenting courses; opportunities to stay and play and a chance to meet and talk with other parents.
The chance to access peer to peer support can be invaluable and a life line for many parents who often feel alone. This is true for both mums and dads and we’re keen to recognise the important roles fathers play in their children’s lives. Our Saturdads project, which started in 2009 and worked with 89 dads last year alone, helps fathers develop stronger, positive relationships; build peer support networks; and generally build their confidence as a parent. Too often public funded services are portrayed as places of dependency when the reality is a timely intervention can be the route to flourishing, maturity and development for parents and children.
The Parent Report we publish today gives us an opportunity to compare the views of the wider parent population to our own insight. From parent feedback at our services, through to safeguarding reporting, we are able to draw out comparisons and identity some common themes. What we do know from the work taking place is that it’s not always easy for families to reach out.
All too often, parents are afraid to engage. For whatever reason, whether its concern over how they will be perceived, or feeling like they have somehow failed, we’re often the last place they turn. It’s not uncommon for us to be told by parents that they wished they’d reached out sooner. But the question we need to ask is ‘why aren’t they?’
We need our services, and those offered by others like us – from government, charities, schools and GPs – to be recognised as the safe and reassuring places we believe them to be. Where parents can take their children and be free from judgement at a time in their life when they need it most.
It’s only fair that we all accept some responsibility with this – if parents don’t feel that they can access the support available, what can we do differently to help them on their way? More awareness maybe; more accessibility for the isolated and hard to reach groups most definitely; but maybe it’s more than that.
In a world where they are so many expectations and pressures, living up to a perfect ideal can make a tough job even harder. From our part, we want to ensure there is always someone there to support families – especially those in greatest need – with good information, advice and meaningful support.
About the research All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 1,842 GB parents with children under 18 years of age. Fieldwork was undertaken between 21st – 27 April 2017. The survey was carried out online. The figures have been weighted and are representative of all GB adults (aged 18+). * When asked about the three issues they are most concerned about for their children, either now or in the future.
The Conservatives’ manifesto pledges on social care have been both controversial and muddled, but at least the issue of support (and how we pay for it) is finally a subject for mainstream national debate. Campaigners have long argued that plans to fix the broken social care system must be high on the political agenda, but many of the people who rely on it most are rarely wooed by politicians – as the above quote from Gary Bourlet makes clear.
Guides to voting:
Easy read guide to voting in the general election published by the Electoral Commission and Mencap – pdf: “People with a learning disability have as much right to vote as anyone else. Don’t let anyone else tell you different.” (See also this pdf from the Electoral Commission on disabled people’s voting rights).
Easy read summary of social care issues that all parties should consider, from VODG: “Our General Election statement sets out the issues VODG wants all political parties to consider during the General Election 2017 campaign.”
Event at 10.30am Sat 3 June University of East Anglia: “Learning Disability nursing students at the School of Health Sciences have organised an information day for people with learning disabilities so that they can find out more about voting in the upcoming general election…The political parties will be represented at this drop-in session and will provide accessible information and discuss their policies with people with learning disabilities.” Also see the related Facebook group.
On social media:
You can also follow the hashtags #LoveYourVote #EveryVoteCounts #LDvote #EasyReadElection #LDVote2017 on Twitter.
* This post was updated on Mon 22 May with information on the University of East Anglia event, Green Party manifesto and Conservative Party manifesto, on Fri 26 May with RNIB info and Scope’s voting guide and on Fri 2 June with the United Response resource.
“A certain amount of support has gone, so this has made people themselves more involved with each other – we get together more.”
I spoke to older people like Val, Rene and Jane, who live in sheltered housing on the south coast, for a piece in the Guardian this morning; the comment above reflects how the kind of housing they live in has changed radically in recent decades.
Rene spoke to me about the shock felt by residents as support services are cut, their criticism of government and the need to rally round and adapt (with peer-to-peer support, for example) as help is scaled back.
Over 20 years ago, for example, the Worthing Homes sheltered complex I visited had housing staff onsite who ran activities. Now, thanks to years of government cutbacks to sheltered housing support, there are three frontline staff rotating across up to 2,000 homes in the region, depending on need, and drop-in sessions run by external experts.
General sheltered housing, like that run by Worthing Homes, offers low-level support and self-contained accommodation for low income people aged 55 or older. Benefits include greater independence and less reliance on health and social care.
The approach in the Worthing region, an area known for its high proportion of older people, underlines the value of sheltered housing as the population ages, and mirrors similar moves across the country.
Simon Anderson, Worthing Homes head of customer services, says the landlord and residents have tried to work together since the council funding cut: “We were asked to do much more work for less money…but ultimately this is a housing provider and its residents coming together [through agreeing new initiatives] at a time of austerity”.
A 2012 Age UK report, Making it Work for Us [pdf] suggests “listening and responding to the views of residents should be fundamental in shaping what sheltered and retirement housing offers”. Simon explains: “Some people who moved in when there was someone [staff] here all the time…Now they’ll be thinking ‘I didn’t sign up for this’…So in conjunction with them, we began discussions on what the future service would look like. Social isolation was a significant issue for many”.
With the green paper on such issues due after the election, and further funding changes looming, Simon acknowledges “the lack of clarity and certainty”, yet he is resolute: “We have no plans to withdraw our sheltered schemes as they bring significant benefits to our residents as well as savings to the public purse by maintaining our residents’ health, tenancies and independence.”
Roy Warman’s wife, Phyllis, died in January 2015. Buoyed by well-wishers in the first few weeks of bereavement, the visits and telephone calls gradually dwindled, and he felt increasingly alone. Many of his friends have passed away, he does not have any family nearby and the couple never had children. He explains: “The longer it goes without speaking to someone, the harder it gets.” He describes loneliness as “one of the hardest things that you will encounter in life”, likening feeling low to “living in a void”.
Today he is part of the charity Age UK’s telephone befriending service that matches older people with like-minded volunteers for friendship or phone calls. Roy has weekly phone calls with a volunteer he describes as “like the daughter I never had” and he also has regular visits from another volunteer as part of Age UK’s face-to-face befriending scheme.
The kind of weekly phone call or visit that Roy gets are among the solutions to help ease the loneliness epidemic affecting 1.2 million older people in England; I’ve written about this for the Guardian today.
Age UK says that 1.2 million older people are chronically lonely and that this has an adverse impact on mental health, and the challenge will increase as our population ages. In the next 20 years, England’s over-85 population is set to rise from nearly 1.3 million people to just under 2.8 million.
These were among the issues discussed when I recently spoke to BA and MA students at Coventry University as a visiting lecturer. I was interested in what expectations and views people preparing to enter the world of social work had of the sector, and what had motivated their choice of career.
I have spent two decades working for central government, social care providers and now, as a PhD researcher at the University of Cambridge examining what quality of life means to people with learning disabilities in residential care. An advocate for disability sport, I also recently co-founded an inclusive dance company that provides disabled and non-disabled people with the chance to learn in an inclusive environment. In addition, I am guardian to my older brother who has autism. So I started by asking the student-filled lecture theatre to indicate if they had a relative with a disability. Almost everyone raised their hand.
I was struck by the maturity, insight, and engagement of the students I met. They wanted to work in social care because they see themselves as caring. But already so early into their careers, many had met with challenges and wanted guidance and support but were not sure how to access this.
I spoke about the duty of every individual to take ownership of better practice, and not to allow poor practice to happen around them by saying nothing. A student approached me during the break. She said she had witnessed physical abuse in a care home during her placement but she was so junior she felt unable to do anything. I advised her of the regulatory authority and how to report abuse confidentially but there was wider concern among students that in a tight-knit environment where staff know each other well and there is a culture of solidarity, it would be difficult to report poor practice without being identified and singled-out. There was an echo of support for one student’s view that one can feel disempowered to make a difference when the scale of the challenge seems so vast or as she put it: ‘what difference can I make when the system is so broken’.
Hearing comments like this, I was heartened by the students’ willingness to self-reflect on how they can make a personal impact on people’s lives in spite of the wider challenges. We discussed what quality of life and identity means for people with disabilities. I shared case studies of support workers and how they had enabled people to achieve their potential by making efforts to engage on a personal, individual level and thinking about what someone can do not what they can’t.
I spoke about my work around inclusive dance through Step Change Studios, which provides disabled and non-disabled people with the chance to learn in an inclusive environment, and the feedback from disabled people on what being active and participating in society on an equal platform means to them. I was really pleased to receive feedback which showed that students understood that inclusion was not simply about taking part in an activity but goes much deeper. As one student said: ‘The description of the woman with a disability who said as a dancer she could feel like a beautiful woman was powerful and made me realise that people with disabilities often don’t ever get to see themselves in this way’.
As another student commented after the lecture: ‘I was really struck by the way Rashmi spoke about social work becoming ‘transactional’ – this is my experience of how a lot of learning disabilities services are. Relationships happen, but the emphasis that managers have is ticking boxes.’
The students also asked for advice on how to cope with challenging situations and people, I reflected on what I have learned during difficult times: identify good people who can inspire you and don’t be distracted by negative people; focus on potential not obstacles; making a small difference is better than doing nothing; and look after your wellbeing because you cannot be of value to someone else if you do not value yourself.
* Rashmi Becker’s Step Change Studios is holding a ‘Strictly’ style competition at Stratford Circus, East London, today (Monday 24th April) with care provider East Thames involving people with learning disabilities. The event is being held in advance of the UNESCO International Day of Dance next Saturday, 29 April. Contact Step Change for more information.
* A previous post on wheelchair dance can be read here.
Encouraging dementia-friendly design is an important part of the debate and some of the innovative developments in this area are a welcome contrast to the lack of progress elsewhere.
Care and support charity the Abbeyfield Society has unveiled a £9m new development, Abbeyfield Winnersh, in Berkshire. Early images give one an idea of how design can be used to support people with dementia. Granted, the images look a bit eerie on account of the noticeably absent people, but they at least offer a glimpse of what the new developments in dementia design can offer.
Each of the 60 residents in Abbeyfield Winnersh will have their own ‘window’ next to their front door (pictured above) – effectively a memory box with instantly recognisable, personal items to help them identify their own door.
All bedrooms – all leading onto an outdoor space – are arranged in six, circular clusters of 10 ‘households’ aiming to offer a more homely, community feel.
The furniture and furnishings have been chosen to reduce anxiety with, says Abbeyfield “calming colours and textures chosen to stimulate the senses and promote reminiscent memories”.
Facilities for family and friends include a playground for young children, above.
Involving the friends and relatives of care home residents in the life of a care home is a crucial and not often acknowledged issue in dementia support. As a previous post on this blog by Kate Murray stresses, the importance of helping children understand and be aware of dementia cannot be underestimated.
Laura’s piece, Post Party, is one of 1,240 chosen from 12,000 submissions and the original was snapped up by a buyer on the second private viewing day.
Having her submission chosen for the annual show, says Laura, who has a learning disability, has made her feel “equal”. She adds that it was a “massive goal” to be accepted for the exhibition but that she was also “scared, excited, amazed”.
Laura explains what she enjoys about her work: “l lose my difficulties in the moment of creating. I feel from finding life difficult, it becomes clearer. As l make decisions in my drawing l just feel my way through and fill it with colour and drawing .
Although Laura’s artistic work was not one of our interview topics, we chatted afterwards about her art studies, progress and plans. I remember Laura explaining how important the creative process was to her and how important it was for her to develop and succeed. Three years on, she is fulfilling her ambitions by being accepted for the Royal Academy event; it is the biggest open art exhibitions in the UK and has taken place every year since 1769.
Laura says of making art: “l lose my difficulties in the moment of creating. I feel from finding life difficult it becomes clearer. As l make decisions in my drawing, l just feel my way through and fill it with colour and drawing.”
This is Laura’s artist statement: “I tend to notice social interaction. People’s characteristics are often displayed externally. As I draw following the line I somehow see inside as well as outside and clothing adds its own story. I draw to enjoy and convey something of the often, quirky nature of how I see and to provide a wry smile. I invent using colour and line and I am experimental in the way I use line and create structure. I choose different paper surfaces to do this.”
And here are some more examples of Laura’s work:
* Laura can be contacted on firstname.lastname@example.org
The website laurabroughtonartist.weebly.com shows some of Laura’s earlier work and will be updated with more current work in coming weeks.
Ben was admitted to an assessment and treatment unit (ATU) miles from his home after his first supported living placement broke down. After the ATU, he moved to a newly built flat nearer his family but that support has now also broken down. He has to move again, into temporary accommodation, while care commissioners organise the next option.
When I interviewed Ben’s mother, Catherine, she was both eloquent and outspoken as she described how the human rights of her son were being eroded after he was repeatedly failed by the very system designed to support him.
This is where we are today. Upwards of 2,500 people stuck in inappropriate, discredited care, and the strong will to get them out is being undermined by the lack of a clear way.
And meanwhile, many parents – every single one of whom has spent years relentlessly fighting for the right support – feel they cannot always openly challenge the authorities, such is the fragile and often hostile relationship between families and commissioners of care.
* Names and details in the article have been changed
How do families of people with learning disabilities or autism feel they are treated by health and social care professionals? According to Karen Callender Caplan, who I interviewed for the Guardian, “You feel dismissed, you feel ignored … you have to gird your loins, you have to be ready to be bullish and persistent.”
Caplan’s sister Robin, who was severely autistic, had mild spina bifida and was partially sighted, died four years ago. She had been ill for over three months with intermittent vomiting and diarrhea, but the first her family heard of her condition was on the day before she died. In the months before collapsing at her Essex care home, the 53-year-old, visited her GP surgery six times and A&E twice. Yet her inflammatory bowel disease – a treatable illness – remained undiagnosed.
Despite says bereaved relatives must become campaigners, pursuing answers from disparate agencies.
An inquest last May at Walthamstow coroner’s court, in east London, concluded Robin died of natural causes contributed to by neglect, with expert witnesses noting missed opportunities to save her. However, there is be a second inquest this autumn as new evidence is to be presented about Callender’s medical care. The pre-inquest hearing takes places next week.
Caplan hopes the new development will reignite the family’s campaign for a “Robin’s law”. This would make it a criminal offence for a care home not to inform next of kin if someone they support, who lacks capacity to act in their own best interests, has an ongoing illness, and then dies. They also want there to be a duty on medical staff to inform relatives when treating such patients.
Equally important are more rights for the individuals supported so they have more control over their own lives. This is what the ongoing campaign for the LB Bill -sparked by the preventable death of Connor Sparrowhawk – would put in place.