Category Archives: Housing

‘It’s like the light’s come back on’: connecting people in care homes with their communities

Paul Williams, former champion runner, is now a fledgling public speaker thanks to a new project connecting people who use support services with their local communities (pic: NDTi)

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.”

Read the full piece on the Guardian website

Institutions – in all but name

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).

Today. 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).

Campaigners have drawn attention to the fact that this new target essentially extends the original one.

Inpatient conditions for learning disabled people are also in the spotlight with a forthcoming government-commissioned review into restrictive approaches to learning disability care. In addition, similar issues are the focus of the parliamentary Joint Committee on Human Rights, which has recently been examining conditions in learning disability units.

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.”

The rush 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.” 

Another risk, 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.”

  • Read the full story in today’s Guardian

Happy Christmas 2018

My youngest sister Raana (left) – cheers and merry Christmas and a happy new year!

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.

There’s been a welcome focus in the media recently on learning disability, thanks largely to the determination of campaigning families, but there’s a huge amount left to do. People are still subjected to inequalities in health, housing, employment and attitudes, 2,350 autistic and learning disabled people are still stuck in “assessment and treatment centres” – despite the government’s long-standing promise to move them into proper housing in communities.

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.

A stepping stone to success: new mental health support for women

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.

*Not her real name

What would a truly accessible city look like?

Sweetwater Spectrum, austim-friendly housing in Sonoma, California (pic: Leddy Maytum Stacy Architects)

By 2050, an estimated 940 million disabled people will be living in cities, lending an urgency to the UN’s declaration that poor accessibility “presents a major challenge”.

The Convention on the Rights of Persons with Disabilities and laws like the Americans with Disabilities Act, the UK’s Equality Act or Australia’s Disability Discrimination Act, aim to boost people’s rights and access. Yet the reality on the ground can be very different, as Guardian Cities readers recently reported when sharing their challenges in cities around the world.

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.

Cities benefits from accessibility; one World Health Organisation study described how people are less likely to socialise or work without accessible transport. Cities also miss out on economic gains; in the UK the “purple pound” is worth £212bn , and the accessible tourism market for disabled visitors is worth £12bn.

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.

Ed Roberts Campus – a fully accessible building iN Berkeley (pic: Leddy Maytum Stacy Architects)

No city is wholly accessible and inclusive, but there are groundbreaking examples leading the way – and we just need more of them.

Read the full piece in the Guardian here.

Sexism, stereotypes – and getting sanitary bins on site

Recent graduates talk about candidly women in construction (photo: Leon Csernohlavek)

Do women get a good deal in construction?

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.

People power can transform communities – we need more of it

Guest post by Tracy Fishwick, chief executive of Transform Lives

Leeds Community Homes is striving for a people-powered community housing revolution, placing the new organisation at the cutting edge of housing practice.

The not-for-profit group has raised £360,000 to invest in 16 permanently affordable homes through community shares (a type of share capital called ‘withdrawable shares’ issued by co-operatives or community benefit societies). With the first tenants due to move in by next April, the organisation’s #peoplepoweredhomes campaign is an innovative way to create housing developed by local people, to meet the housing needs of local people. The project wants to create 1,000 affordable homes over the next decade.

People-focused housing solutions are at the heart of the People’s Powerhouse event taking place next month. The housing group’s work in Leeds is the kind of positive story of local change that we hope will inspire delegates to recreate similar projects in their own communities. More good practice like this is vital at a time of chronic housing shortage, with housebuilding falling almost 100,000 homes per year short of achieving the government’s ambition.

You may have read about the People’s Powerhouse which was launched in February and originally billed in the press as “a rival ‘northern powerhouse’ conference to one that advertised 15 male speakers but no women and just 13 of all 98 listed speakers were women”.

Leeds Community Homes, Plus Dane Housing and my own company, Transform Lives, are just some of the organisations taking part. We hope the People’s Powerhouse will help create a dialogue about inclusive, good growth, and its potential to transform communities and lives across the North of England.

Other work worth replicating includes Give Get Go, which Transform Lives collaborates on with a group of housing organisations. The initiative supports social housing tenants into work – connecting unemployed people to employers through volunteering and mentoring, growing skills and confidence and creating jobs. Key to the project’s success is bringing civic institutions and leaders together for the first time to work collaboratively in Liverpool, including the University of Liverpool, Everton FC and the National Trust.

We also work with Plus Dane Housing on its Waves of Hope Big Lottery programme, which aims to tackle homelessness and other complex barriers to work. In just two years, the project has supported 236 people, 83% of whom say their rough sleeping has been reduced. And 67% report a reduction in substance misuse. Both Plus Dane Housing and our other partner, the University of Liverpool, will be showcasing this work at the People’s Powerhouse, underlining the difference we can make when we find good ways of working collaboratively and locally.

Our hope is that we will build a long-term movement for change that supports good and inclusive growth in the North with a particular focus on how people are the key to growth. The aim is to include all sectors and sections of the community, harnessing the combined skills and leverage of the public sector, voluntary, community, civic leaders and business.

As Lord Victor Adebowale, chairman of Social Enterprise UK and chief executive of social enterprise Turning Point, says: “’People’s Powerhouse’ perfectly reflects our vision for economic investment in the North of England.” Social enterprises often find innovative solutions to social issues and as Lord Victor, a People’s Powerhouse keynote speaker, adds: “We cannot allow anyone to be left behind. Investment in the North must be inclusive and must be used to support communities as well as businesses, adding value to the lives of real people.”

* The People’s Powerhouse event takes place on Wednesday 12 July from 10am-4pm at Doncaster Rovers Football Ground. For more information and to register see the website. Discounts are available including for young people and for small enterprises and charities.

Why we need to save sheltered housing from more cuts

“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.

But this kind of housing has suffered thanks to historic and widespread cuts to the supporting people fund (the national programme for housing related support available to councils). Now, it is at further risk. The government was forced last year to defer its unpopular decision to impose a cap on housing benefit to supported housing; the proposal was included in a recent government consultation and is due to covered in a forthcoming green paper. Campaigners including the National Housing Federation (NHF) have been challenging the funding plans, with Age UK warning of “uncertainty about the future of sheltered housing in the social rented sector”.

Residents’ concerns over the loss of on site staff in sheltered housing are well documented, but years of central and local government cuts mean that it is now the norm for on-site staff to be axed in favour of telecare and floating support (short-term help with specific problems like benefits). There are no precise figures, but a 2012 review by Joseph Rowntree Foundation noted that as far back as 2009, local authorities estimated that by 2011, 38% of sheltered housing would have floating support, not on-site provision.

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.

Communal garden, Pearson’s Court sheltered housing scheme in Worthing, West Sussex.

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.”

You can read the full piece here.

Designing for dementia

This year, 225,000 people will develop dementia – that’s one person every three minutes – and 70 per cent of people in care homes have dementia or severe memory problems.

There are 850,000 people with dementia in the UK, with numbers set to rise to over 1 million by 2025. This will soar to 2 million by 2051, according to the Alzheimer’s Society.

Despite the prevalence of the issue, a recent report raised serious questions over how prepared we are for the needs of the ageing population. And other research suggests dementia patients are subject to a care postcode lottery ; a further study published yesterday (World Alzheimer’s Day) showed there is no reduction in the use of antipsychotic drugs in dementia care, despite government guidance.

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.

abbeyfield-households-with-their-dementia-friendly-window-memory-spaces
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.

winnersh-view-reva-960x276
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.

castleoak-winnersh-56
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”.

castleoak-winnersh-23
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.

In limbo: life for people with learning disabilities moving out of hospital units

Today's Guardian article
Today’s Guardian article

The government promised four years ago to move people from treatment and assessment units following BBC Panorama’s exposure of abuse at the privately run Winterbourne View.

The preventable death of 18-year-old Connor Sparrowhawk, who drowned in a Southern Health trust unit in Oxfordshire three years ago, and the subsequent Justice for LB campaign, further fuelled demands for action and accountability over the treatment of learning disabled people. In October, NHS England and council leaders set out a £45m plan to close England’s last NHS hospital for people with learning disabilities, plus up to half the 2,600 beds in the units.

But according to the latest figures, in June more than 2,500 people were still languishing in such units as the pace of change is so slow.

My piece in the Guardian today focuses on what happens to people as they are moved out of these secure hospital facilities and back “home” – “into the community”.

Some, like Ben Davis, who has autism and complex needs, are passed from pillar to post as suitable local support just doesn’t exist. Family-led research published today by charities Bringing Us Together and Respond highlights the problems for people like Ben.

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

* Read the full Guardian piece here and the check this for reports by Bringing Us Together and Respond on which the article is based