Society is in the grip of a loneliness epidemic. Headlines regularly warn about the scale of this modern scourge, from describing how social isolation increases our risk of death, to lamenting Britain’s status as one of the most age-segregated countries in the world.
What command less column inches are the small-scale solutions. There is little consideration of how hyper-local schemes – when funded, publicised and replicated nationally – could tackle loneliness and shift perceptions about the most isolated people in the country.
Not only are the singers at opposing ends of the age spectrum (the youngest is five, the oldest is 90), they are from two of society’s most excluded groups: the adults have dementia or a disability or depression; the pupils have severe learning difficulties, complex needs or autism.
Uniting two such disparate groups for an hour a week at the care home has had astonishing results.
It’s a small, simple yet strong solution to the society’s most pressing issue – division. You can read the whole piece here.
Gazala Iqbal, now 46, was overprotected at home and her sense of dependency was reinforced by patronising attitudes from health and social care professionals. One district nurse told Bradford born and bred Iqbal that she spoke really good English “for an Asian woman”.
Iqbal’s story is echoed in a story I’ve just written. The article is also based on new research by user-led charity Asian People’s Disability Alliance (APDA) into the barriers to independence for disabled Asian women. The report, Humare Avaaz (“our voice” in Urdu), follows 18 months of community research involving 90 women with a physical or learning disability, mental health issues, long-term condition or caring responsibility.
Ignorance of health and social care among families, APDA’s findings suggest, is compounded by professional assumptions. While the authorities are aware of the low or late uptake of services, the report states, they “appear content to presume that this is a choice made by ethnic minority communities”.
There are solutions. Bradford council is embedding a human rights approach into its social work. Over the last two years, the learning disability team has made support more accessible, encouraging engagement with the Asian community.
I just did a Guardian interview with Sheila Hollins. The crossbench peer is one of the UK’s foremost authorities on learning disability and mental health but the says her greatest achievement is founding Beyond Words, a pioneering not-for-profit organisation that produces picture books to help people with communication issues. “Beyond Words is what I feel most passionate about because it’s about transforming people’s lives,” she says.
Its origins lie in Hollins’ use of pictures to interact with her son, Nigel, who has a learning disability. “He would roar with laughter at Laurel and Hardy [silent] films but didn’t put a word together till he was eight.” When Nigel was nervous about an adventure holiday, his parents drew pictures depicting activities like abseiling: “When we put things into pictures, he felt more in control.”
Thirty years on, Beyond Words has distributed or sold 100,000 copies of its 57 titles, which cover everything from relationships to surviving abuse. Each title involves 100 learning disabled people as advisers or authors. There are 60 associated book clubs with 350-400 members.
Nigel Hollins, now 47, is a Beyond Words adviser and runs one of the Surrey book clubs. He lives independently in a flat near his family with support from a personal assistant. His mother says: “People see Nigel in the shops, cafe or train station. He has a life in the community.”
Paul Williams has a learning disability and was once an athlete. Years in institutional care meant he didn’t mention his talent. With the Time to Connect project, which I wrote about in the Guardian today, he dug out his medals, has done a local talk and is now writing his life story.
Williams, his care organisation and volunteer are part of the Time to Connect community inclusion project. This encourages stronger links between people using care services and their neighbourhoods, and ensures they become more active citizens. Time To Connect is a partnership between social inclusion charity NDTi(National Development Team for Inclusion) and Timebanking UK, the national charity that helps people to share time and skills.
So far, Time to Connect has involved 265 people: 92 care staff, 102 older people, 39 learning disabled people, 10 people with mental health support needs and 22 time bank members. An interim reportdescribes positive outcomes for all participants: “The evaluation found numerous examples of increased confidence and motivation among care staff as well as changes to attitudes and behaviour. This is in turn leading to increased opportunities for people to connect with their communities.”
Time to Connect adds value to care work because support staff get a greater glimpse into people’s lives and characters, rather than focusing simply on their physical needs. Clive Brown, Paul’s support worker, says: “It makes the job more rewarding and it improves my relationship with the people I’m working with. It just makes me smile a little more.”
I love the photo, above, of Jamie Newcombe, taken by Martin Godwin for an article in the Guardian today.
Jamie, who has a learning disability, was once in a series of restrictive inpatient care units, including a stint in so-called “locked rehab” where he ended up with a broken arm (you can read more on his experience here).
Jamie is proof that people can thrive if supported in the right way.
The government’s long-stated ambition is to move the majority of learning disabled and autistic people from inpatient institutions like assessment and treatment units (ATUs) into community-based housing. This has been the goal of its transforming care programme, due to end in March (and actually care in the community has been the goal of successive governments for decades..).
Transforming care was launched after the 2011 Winterbourne View abuse scandal exposed the reality of ATUs. The aim was to move all inpatients into community-based housing within three years. That target was missed and progress on moving people from ATUs has been slow.
Transforming care is ending soon but there are still 2,350 people in ATUs and there appears to be no replacement for the national programme. Instead, last week’s NHS long-term plan included a new target (by 2023-24) to reduce the numbers in ATUs by half compared to 2015 levels (when there were around 3,000 people in such units).
have drawn attention to the fact that this new target essentially extends the
As ATUs rightly
fall out of favour, campaigners
fear more people will be discharged from them into care that could be equally
restrictive, like the sort of locked rehab unit that Jamie was in.
Jayne Knight has visited several locked rehab settings. Knight is an independent family advocate and founder of You Know, which helps people find community housing and care. She describes these “institutions in the community”: “There can be systems of going through one locked door after another. In some places, you are asked what is in your bag and it’s checked, people can still be restrained physically on the floor in their own homes.”
Knight recalls one six-bed facility for autistic people behind a padlocked gate at the end of a residential road, with two staff supervising each resident. She adds: “The number of people was overwhelming. There were narrow hallways and small rooms…It was noisy and the atmosphere didn’t feel calm. People shared bathrooms and so a very strict rota and timetable was in place to enable this.”
to move people from ATUs is likely to have negative consequences, says Steph
Thompson, managing director of Waymarks, a voluntary sector organisation
supporting people from hospitals into communities. Thompson says: “Pressure to
meet discharge targets is highly likely to have two unintended consequences.
One, is putting people at risk through unplanned discharges into the community.
The other, is step down or across into another ‘bed’. Both routes achieve the
discharge target but neither is good for the person.” She adds: “If you have a
performance target to meet as a commissioner and an agreed discharge date, it
can feel safer to move someone into a ready built unit with a vacancy, health
professionals and potentially a lock on the door. It fixes the figures. But
it’s not transforming care.”
says Lib Dem MP and former health minister
Norman Lamb, is the
revolving door of discharge and readmission: “There is a massive risk at the
moment driven by the nervous pursuit of a target and a recognition that they
have left it too late and if you rush to hit the target with time running out
then the risk is you cut corners, you can discharge people unsafely potentially
with the risk of them being readmitted or you discharge them to inappropriate
or unacceptable settings that don’t actually enhance their quality of life.”
Meanwhile, National figures on planned discharges reveal a marked rise in people moving from ATUs to “other” settings; from 160 transfers in March 2016 to 465 in October 2018 – that’s 20% of all 2,350 people. NHS Digital, which collates the statistics, does not collect information on what “other” settings constitute or on locked rehab or discharges into private placement.
Chris Hatton, Lancaster University professor of public
health and disability, says: “It’s hard to know where people are going,
what these ‘other’ places actually are, and whether people being moved notice
any difference from ATUs…without transparency, it’s possible to game the
statistics to make the ‘transforming care’ numbers look good while consigning
people to invisibility in places that feel very similar to inpatient units.”
The ultimate answer, says Gary Bourlet, co-founder of
campaigning organisation Learning Disability England, is that people need decent
jobs alongside good quality community housing “but there’s no national mandate
for driving this forward.”
Season’s greetings to everyone – this is me with my sister Raana, thanking everyone who’s collaborated on stories, projects and posts this past year – here’s to more of the same in 2019.
Big thanks also to all of you who’ve supported or helped publicise the crowdfunded book I’m editing, Made Possible, about the talents of people with learning disabilities. It’s
partly inspired by my sister, who has the learning disability fragile X syndrome, and aims to shatter the lazy stereotypes we have about learning disability.
Here’s hoping 2019 will bring more action, instead of just more rhetoric, as I’ve written before, and the people who have to spend the festive break in inpatient care are reunited with their families soon.
Being able to do her own washing and having responsibility for her personal possessions symbolised the freedom Michelle Stevens* wanted but was denied in institutional care. Stevens features in my latest Guardian article (screenshot above). Her severe mental health problems meant she was in and out of residential care and mental health wards for a decade. She recalls staff shouting at her and living circumstances that were “very closed up and not nice at all”.
Today, however, Stevens says she is “much happier and freer”. She has a bedroom in a large double-fronted Victorian house – and she loves the garden at her supported living home in West Norwood, south London, which is run by social care provider Certitude. “[It] is cleaner than other places I have been, and has nicer facilities,” says Stevens.
She enjoys socialising – with the 11 other residents and locally – and for the first time in three years, she does her own washing and is trusted with her belongings.
The women-only housing is designed for those with enduring and complex mental health issues who may be stuck in restrictive environments. Certitude provides support while First Priority, a housing association, manages the tenancy agreements. The home opened in September 2016 and residents, who are mostly in their 30s and 40s, benefit from individualised support that is rarely offered in residential or inpatient care.
I’m really grateful to all the women who shared their experiences for the story and talked about the “good road ahead”, as Michelle put it, which now seems to be ahead of them. Read the rest of the article here.
Barriers for physically disabled people range from blocked wheelchair ramps to buildings without lifts. The cluttered metropolitan environment, meanwhile, can be a sensory minefield for learning disabled or autistic people.
My Guardian report today looks at some of the most innovative city-based developments in the UK, Europe, Asia, America and Australia. These include skyscrapers built using universal design principles to the retrofitting of rails, ramps and lifts in transport services or digital trailblazers that help disabled people navigate their city.
For example, mapping apps make navigating cities a doddle for most people – but their lack of detail on ramps and dropped kerbs mean they don’t always work well for people with a physical disability. The University of Washington’s Taskar Center for Accessible Technology has a solution: map-based app AccessMap, allowing pedestrians with limited mobility to plan accessible routes.
Wheelchair user John Morris, who runs advice site Wheelchair Travel, says: “Seattle’s geography, with changes in elevation, sidewalk and street grade on a block-by-block basis, often make it difficult to navigate in a wheelchair. AccessMap combines grade measurements with information on construction-related street closures and the condition of sidewalks to plot the most accessible course, pursuant to the user’s needs. I would like to see AccessMap included as part of a holistic accessible route planner that includes the city’s public transportation services in building the most effective journey. Pairing AccessMap with the city’s route planner tool or with transit directions from Google Maps would make getting around Seattle easier for people with disabilities.”
Steve Lewis, a 69-year-old manual wheelchair-user who has helped co-design the Seattle technology, adds: “I spend a lot of time in downtown Seattle and am well aware of what a barrier the hills are to wheelchair travel. I have learned from experience how to navigate the downtown corridor. The best routes for someone in a wheelchair will take advantage of elevators in buildings entering on one street and exiting several stories higher on the adjacent street. AccessMap is an effort to automate and make accessible the knowledge I have acquired through experience. It currently shows graphically the steepness of the terrain. The Taskar Centre is involved in a major effort to automatically display the best routes for wheelchair users with knowledge of elevators and mass transit including the hours they are available.”
Through its related OpenSidewalks project, the Taskar Centre is developing a system to crowdsource extra information like pavement width, or the location of handrails. Nick Bolten, AccessMap and OpenSidewalks project technical lead, says: “AccessMap tackles a neglected problem: how can you get around our pedestrian spaces, especially if you’re in a wheelchair? AccessMap lets users answer this question for themselves, and OpenSidewalks will help add the information they need.”
In another US-based project, this time in Sonoma, California, a $6.8m supported-housing project, Sweetwater Spectrum, is a pioneering example of autism-friendly design. Autistic people can be hypersensitive to sound, light and movement, and become overwhelmed by noisy, cluttered or crowded spaces. However, the scheme is designed according to autism-specific principles recommended by Arizona State University. The complex, which opened in 2013, includes four 4-bed homes for 16 young adults, a community centre, therapy pools and an urban farm – all designed by Leddy Maytum Stacy Architects.
Noise is minimum thanks to quiet heating and ventilation systems and thoughtful design – like locating the laundry room away from the bedrooms. Fittings and décor reduce sensory stimulation and clutter, with muted colours, neutral tones and recessed or natural light used rather than bright lighting. Marsha Maytum, a founding principal at Leddy Maytum Stacy, says the design “integrates autism-specific design, universal design and sustainable design strategies to create an environment of calm and clarity that connects to nature and welcomes people of all abilities”.
And there’s another great project from Leddy Maytum Stacy in nearby Berkeley, the Ed Roberts Campus, “a national and international model dedicated to disability rights and universal access”. The fully accessible building, named after the pioneering disability rights activist Ed Roberts, is home to seven disability charities, a conference, exhibition and fitness spaces, plus a creche and cafe. Features include a central ramp winding up to the second floor, wide corridors and hands–free sensors and timers to control lighting.
No city is wholly accessible and inclusive, but there are groundbreaking examples leading the way – and we just need more of them.
This was the question debated by a group of young women in diverse roles in the construction industry for an article I’ve just done for Construction Manager magazine.
According the Office of National Statistics, women account for just 12.8% of the workforce. Then there is the gender pay gap – the construction and building trades’ supervisors have the highest in the sector, with men paid 45.4% more than women. Little wonder then that the number of women in construction has dropped by 17% in the last 10 years, compared to a 6.5% drop for all workers in the industry.
You can read the full piece to see why it makes economic as well as ethical sense to increase the numbers of women in the industry. Among the topics debated were the fact that more action is needed to break the stereotype that construction is a man’s industry.
The roundtable heard that issues such as a lack of female toilets or sanitary bins are common. As one participant said, if a woman working on site has to leave the project several times a day to find a public lavatory, there is a strong productivity case – as well as a human rights case – for installing facilities.
Thanks to all who took part in what was a fascinating and determined debate – and all power to these strong young women and their efforts to shake up a male-dominated sector.