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.
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
Ports of entry like Kent and Croydon look after a disproportionate number of child asylum seekers, and government funding doesn’t cover all the costs, as I explain in a piece on the Guardian’s social care pages.
Many concerns were raised at the National Children’s and Adults Services Conference in Bournemouth in October, and are reflected in recent research from Brighton University. This describes “an extremely uneven distribution” of unaccompanied minors. A Freedom of Information request reveals that seven out of 150 English councils look after 43% of all unaccompanied asylum-seeking children.
In Kent, there are 1,384 unaccompanied asylum-seeking young people, including 982 under-18s; more than a third of all looked-after children.
Peter Oakford, cabinet member for specialist children’s services says: “It’s been the most difficult year Kent county council has ever experienced regarding unaccompanied asylum seeking children … This places enormous pressures on staff in services within the council, foster carers and education services as well as all our partner agencies like the police and health.”
Amid the debate about dispersal schemes and funding shortfalls, Kent’s latest figures reveal the human cost; 180 children do not have an allocated social worker and are still waiting for a full assessment.
The MBE recently won by Shaun Webster is, he says “two fingers” to the bullying colleagues who tormented him when he worked in a warehouse some years ago.
You can’t disagree with the 43-year-old’s use of frank language – his deeply unpleasant workmates once used sticky tape to bind Webster, who has a learning disability, and stuffed a rag in his mouth. This was done “as a joke”, he recalls in an interview I did for today’s Guardian. Little wonder he has devoted his life since then to fighting for inclusion and equality.
As explained in today’s piece, the international project worker for Leeds-based human rights charity Change is a sought-after speaker and trainer in the UK and overseas. His work includes advising government departments about inclusive employment, promoting access to sex and health education for learning disabled people and recent visits to Thailand and Croatia to train health, social care and charity professionals about independent living and disability rights.
Shaun talks passionately and persuasively about issues like employment rights and independent living for people with learning disabilities, making the point (usually missed by policy makers and politicians) that the two issues must be seen together; earning your own money and having a role and responsibility supports independence.
Shaun’s current work involves a partnership with children’s charity Lumos, supporting young people to leave institutions and gain independence, choice and control. Linked to that piece of work is the report Shaun wrote, Leaving Institutions, a really great example of a publication written with a clear focus on people (not targets or statistics, or a homogeneous mass) by authors who truly know about and have experience of what they’re talking about.
The entire interview can be read here and the film below is worth a watch too:
Barbara Davis’s abusive boyfriend burned her fingers on the stove when he discovered her packed suitcase under the bed and realised she was trying to leave. He had controlled Davis, 36, who has a mild learning disability, for years. He isolated her from family and friends, verbally abusing her parents until they stopped visiting. He locked her in the privately rented London flat they shared, goading her to kill herself. She recalls: “He told me to strangle myself with a wire … he wanted me to die.”
Davis (who eventually escaped) told her story to researchers from the Tizard Centre as part of a project to explores the experiences women with learning disabilities who suffer domestic violence. The work, which also looks at the attitudes and practices of professionals who support such women, is featured in my Guardian piece.
There are some shocking – although perhaps not surprising (given the low profile of learning disability as an issue) – facts included in the piece. Among them, that the UK has just one specialist domestic violence refuge for women with learning disabilities. What’s more, most police officers (often the first point of contact in a domestic abuse incident) do not believe that a learning disability makes women more vulnerable to domestic violence.
Women in Croxteth, Liverpool, discuss the impact of cuts on communities, part of the research for the new book, Austerity Bites
Do you know what austerity really means?
Here’s a definition from the Collins Dictionary, as quoted in Mary O’Hara’s commanding new book on the subject, Austerity Bites: “…difficult economic conditions created by government measures to reduce the budget deficit, especially by reducing public expenditure: a period of austerity/austerity measures.”
But that literal definition, and the words of politicians using the rhetoric of austerity to mask the harsh impact of public spending cuts, conveys nothing of the human cost of the unprecedented reform of the welfare state.
Austerity Bites redresses that imbalance. I don’t usually do reviews on this site, but this timely book demands attention.
Reading this book means you join the award-winning journalist O’Hara in her “journey to the sharp end of cuts in the UK”. Based on a 12-month trip around the country meeting diverse people affected by cuts as reforms were introduced in 2012 and 2013, O’Hara gives a platform to untold stories of hardship.
O’Hara’s book suggests, “austerity” has become an acceptable rhetoric, one that glosses over the harsh impact of welfare reform – as in “cuts hurt but in the age of austerity, what else can we do?” The creeping normalisation of food poverty and food banks, as explored in this book, is shameful.
While an intricate explanation is given of the political and economic context, it is the lives of those whose voices are rarely given a platform – the homeless, the disabled, the young among them – that are the focus here.
Crisscrossing the country, the picture is one of political classes living in a “bubble” untouched by the harsh reality of life on the front line of Austerity UK; a massive chasm between the people suffering from the impact of cuts and abolition of vital benefits and the people making the decisions to abolish that support.
People talk of “breaking point”, “existing not living”, their “desperate situation”; the book does much to explode the myth of benefit Britain. A fairly comprehensive catalogue of unfairness is chronicled in Austerity Bites – the disabled, for example, are shown to be bearing the brunt of cuts, the vulnerable are made more vulnerable and the poorer become poorer.
As one man, Dec, who O’Hara meets on a Luton estate tells the author: “Do I deserve better? Do other people deserve better? I think they do.”
Unsettling, but vital, reading, this book lays bare the real, true story of austerity.
Hazrat Bilal from Narshingdi, Bangladesh, has been blind since birth, but it was only in 2008 at the age of 33, with support from Bangladeshi charity Action for Blind Children, that he was officially registered as permanently disabled. That led to more support from services for the visually impaired; Hazrat got to know other people with sight problems and began to gain confidence.
The 39-year-old now runs his own grocery shop and has helped form a self-help group. It was only after help from the local charity, a partner of international charity Sightsavers, that his life was transformed but if more international development and aid plans were disability-inclusive, there would be many more stories like Hazrat’s.
One billion people all over the world – 15 per cent of the population – have a disability, according to the World Health Organisation. Of that total, 80 per cent live in developing countries.
The report’s recommendations echoes some of the actions outlined in international charity Sightsavers’ Put Us in the Picture campaign. Launched last year, the campaign calls on policymakers and politicians to include disabled people in international aid and development plans, highlighting the links between disability and poverty.
Specifically, the campaign says the government must ensure people with disabilities participate in, and benefit from, international development programmes and must talk, listen to and work with people with disabilities and their families. It also argues that DFID staff should be trained to include people with disabilities in their work.
You can support the Put Us in the Picture campaign here or follow it on Twitter with the hashtag #InThePicture
How can someone with learning disabilities or mental health issues possibly own their own home? With a long-established but seldom-used form of housing called shared ownership.
The power of the part-rent, part-buy scheme to transform lives is illustrated in a new report, Space to live, published today by social care and housing provider Advance and Disability Rights UK. I was involved in writing part of the report and met home owners like Xenia Kyriacou, who is non-verbal and has complex needs.
Once asked to leave a restaurant after showing challenging behaviour and overturning a table in frustration (she was overwhelmed), only a few months ago, in another local restaurant near the two-bedroom flat she part-owns in east London, Xenia enjoyed a birthday lunch, was presented with a card from the owners and offered a discount on her return.
The change has happened since she moved out of residential care and into her own place.
Home ownership encourages confidence and independence, as was obvious when I met some of the home owners like Xenia and learned more about their experiences. The increased stability can reduce the costs of social care packages and help people get involved in their local areas. The timely report comes as the government considers funding plans for housing for post-2015, including its home ownership for learning disability (HOLD) programme.
The fate of children in care in Scotland has recently his the headlines; care leavers need more support, say experts, if their life chances are to improve. And today Michael Gove has criticised the care home system in England. But what if some vulnerable children could be prevented from going into care in the first place? In a joint guest post, Daniel* and the support worker who helped him describe how a Scottish community-based alternative to custody and secure care helped him turn his life around.
Daniel*, 21, describes how he was supported by the charity Includem:
“I don’t even know if I would be alive had it not been for Includem. I was drinking all the time and taking drugs, valium, cannabis, ecstasy. I was fighting a lot with my mum and other people and ‘doing turns’ – theft, breaking and entering offences – to get money to spend on food and clothes. Things started to go wrong when I left primary school and when I was about 12.
I had a bad relationship with my mum – we argued all the time – and I was constantly getting thrown out of the house. I had nowhere to go so ended up on the streets. I was always in front of children’s panels and going into temporary care and then home again.
I wasn’t happy and could see that this [drinking and taking drugs] wasn’t the right thing to do but it was what was happening in my life at the time. I felt guilty about what I was doing. I wanted things to change but didn’t now how to make changes. I wanted things to be normal and to have a normal family life.
A social worker referred me to Includem; I worked with a few project workers until I clicked with my project worker who became the person who I felt I could work with. We spoke about goals and how to get there and how I was worthy of a better life.
My worker helped me when things were really bad at home; I could call the helpline at any time and Includem would come out and talk to me and my mum and make it ok for me to stay at home. They would meet with me at times when no one else would be able to – at the weekend, when I needed them I would contact the helpline and they would be there.
Includem helped me stay at home and they helped me get into training and never gave up on me. I respected them and they respected me. I felt hopeful that things could be different. They helped with all sorts of things – planning how to spend money on food and clothes to helping with how to deal with bad situations at home and how to get training to help to get a job.
They were there through everything – even during the night – when I lived at home, when I was homeless and then moving into my own place. They made me think that I was worthwhile.
Before I would just go out and steal things to sell so that I could buy new clothes. I learnt how to save money and how to spend it on food so that I would last. They taught me how to deal with situations with my mum – how to walk away from violent situations and how to stay calm.
Things changed for me because my worker listened and respected me so I trusted and listened to my worker. I got on with her and established a relationship – I started to feel hopeful that things could change. Includem listened and didn’t give up on me, even at the start when I didn’t want to work with them.
Now I live with my daughter and girlfriend and I have my own home. I try hard to be a good dad that my daughter can be proud of – I want her to feel loved and cared for and safe. I want a routine for my family and my daughter and I am trying to find a job.”
Karen McCulloch, Includem project worker, on how she supported Daniel:
“Daniel was referred to Includem at the age of 15 due to his drug and alcohol misuse, anger, aggression, and difficult family relationships. He was a persistent high tariff offender and was facing homelessness due to a chaotic relationship with his mother.
When we meet a young person for the first time we listen to what they have to say and let them know what we can offer. We talk through their lives and identify the areas that aren’t working the way they should and start to look at how these could get better. We identity goals and talk to them about A Better Life – a unique toolkit that we use. We let them know we will meet them on a frequent basis and that we will plan normal social activities where we can meet and talk.
We let them know we put them first and they can trust us – that we want the best for them. Often this is a first for young people who haven’t had proper care in their lives or someone to talk to and look out for them.
We gave Daniel intensive support in managing his anger, including practical support on issues such as how to remove himself from volatile situations. Daniel’s relationship with his mother was difficult, and Includem worked with her to set clear and consistent boundaries within the home.
Daniel and his mother used Includem’s 24 hour helpline, not only at times of crisis but for advice and support. Includem supported Daniel for whilst he was on an electronic tag, a period in secure care for his own safety, and voluntary transitional support into adulthood. Throughout this time, Includem supported and liaised with Daniel’s mother to maintain their relationship.
Daniel didn’t gel with his first project worker so we changed workers to someone that Daniel clicked with. Our model is relationship based therefore we are flexible and will try different workers with different young people for the right relationship to be established.
My first visit to meet Daniel was on a Friday night when Daniel was out with his care home – Daniel had none of his own clothes so I went to his home and picked these up and took them to him. We visited him throughout the weekend and supported him. We talked about ways to change things – and assured Daniel that his life could change with the right support and direction. We put a plan in place that we would work through together in order to meet outcomes.
We started to see real changes. We taught Daniel to listen to his “inner speak” – the voice within that said he deserved a better life and that he could make it happen. When he started to realise that he did deserve better, and how to achieve it, things started to change.
Daniel used the 24/7 helpline regularly as a support – he would phone if he had been thrown out of the house or was in trouble. He would call if he was arguing with his mother – on one occasion an Includem worker would be speaking to Daniel on the phone in one room, another would be speaking to his mother on the phone in another room and a worker would be driving to the house to help calm the situation face to face.
Daniel would forget basic things such as when to eat as sometimes he was living between people’s houses – we would remind him that this was essential and give him practical support on what to eat and how to budget his money. We would plan our contact visits with him around when he would receive money and would take him to the supermarket and show him how to spend the money wisely and make it last.
Daniel moved into his own home under a mainstream tenancy at 19 (he is now 21), and is in a settled relationship and doing well. He has created his own family – he and his girlfriend have a baby, and there is no social work involvement with the family at all. Daniel has accrued no court charges or pending court charges for fouryears. He’s very keen to get a job. His partner is looking to start college and his main aim is to build on his progress and continue to provide a happy and loving environment for his child and partner.
We have a “scaffold of support” in place – a team of three – a project worker, an assistant project worker and a mentor – assigned to each young person so that they can build links and relationships with more than one person. Every service we provide is unique for that young person – we fit our service to them, not the other way round.
Among our successful outcomes is the fact that 90% of young people we worked with in a project with Strathclyde police reduced their violent offending. And with 72% of referrals from the Clackmannanshire area, Includem prevented family or community placement breakdown.
The biggest challenge is usually at the outset when young people are wary of accepting help and opening up about issues. Another challenge is actually meeting up with young people on planned visits at the start– often they don’t turn up for planned meetings and we have to go looking for them.
You learn to be creative in situations like this – finding solutions to challenges such as this and others – and speaking to colleagues for advice and ideas in order to make contact. We constantly refer to our A Better Life toolkit for support and advice.
Includem operates 24 hours a day, 365 days a year. We accept any referrals via social work departments, courts and police. We never turn any vulnerable young person away – no matter what their situation is and how chaotic it may be.
‘Stickability’ is a word we have coined – it’s a key part of our service and is at the heart of what we do – we are persistent, we won’t give up on a young person and we will stick with them at all times during the support we give them.”
Timothy Baron was among the first children in the UK to be diagnosed with autism just over 50 years ago. Timothy was in need of specialist education but autistic children then had no right to schooling, so his father, Michael, opened his own school, the movement became the Society for Autistic Children – now the National Autistic Society (NAS).
That was the 1960s; today, Timothy, who lives in residential care, is nearing 60. The first generation of children to be diagnosed with autism is now moving into older age. Ageing with autism brings not only the particular challenges of the condition – communication, social interaction or sensory issues – but the social, physical and mental health issues often experienced in old age.
Policymakers are aware of the impact on society of the ageing population, but the same focus has not been given to people with learning disabilities and autism.