Category Archives: Autism

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

Campaign for the capital’s first sensory bus

Kay Alston's campaign for London's first sensory bus was inspired by her use of sensory books (photo: Kay Alston/Outward)
Kay Alston’s campaign for London’s first sensory bus was inspired by her use of sensory books (photo: Kay Alston/Outward)

Responding to a lack of relaxing, interactive spaces for disabled people, Londoner Kay Alston has decided to launch her own campaign for the capital’s first ever sensory bus.

The 32-year-old, who has moderate learning disabilities, is backed in her social enterprise project to create a mobile sensory room by Outward, the care and support charity that runs her supported living in Camden, north London.

Kay needs to raise £28,245 towards creating the project. A sensory room is a relaxing environment designed to focus on specific senses through special objects, and sound and visual effects. It enables people to interact with, and control the environment around them and is particularly beneficial for people with sensory impairments, complex needs and those with autism.

Kay Alston in her sensory room at home in London.
Kay Alston in her sensory room at home in London.

The idea is that people would pay a minimal fee to use the bus, with the money being reinvested into the social enterprise. The accessible vehicle would include elements like interactive carpets, star ceiling and LED Projectors.

Here, Kay explains why her project is so vital:

“Someone once said that sensory rooms have effects of taking medication without taking the medication. The room would be a stimulating place for people, and it could help to reduce anxiety and stress, and help to improve their concentration. People with disabilities should come to sensory rooms because it’s fun and fascinating.

“The sensory room on a bus will be an interactive and a calming environment. It will have an interactive floor, platform swing, bubble tubes and light projectors with music playing in the background too. The bus will be accessible to wheelchair users. It’s purpose would be to calm and stimulate people, by giving them an interactive and visually stimulating environment.

My idea was inspired by the Autism Show. I went to in 2014 where I got a sensory tactile book, and I have been to other sensory rooms and they’re lots of fun. I have been to day centres and nursing homes where people with high needs simply get parked on the side and have nothing to do. Outward was running a Dragon’s Den competition and staff who already knew of my idea encouraged me to enter. Outward invested in my idea and said they will help me set it up. Outward staff spoke to me about the online fundraising campaign, and helped put it online and I handed out over 100 leaflets to places I shop in, people I know and places where I use their services. It’s also nice to be a little famous.

I hope the bus will be a fun and interactive place for people to learn new things. People with high needs find it difficult to get out, and can’t easily go to a place like a sensory room. Everyone can do what they want and behave in a way where they won’t be judged, sometimes I walk along the street and laugh and people look at me funny and it makes me think I want more control. In a sensory bus I could have more control.

I want to run it through a social enterprise to make it bigger and better, to add new inventions and more equipment to use. The bus will drive around to different places to give more people a chance to experience and use it.

There isn’t a sensory bus in London, and there aren’t many sensory rooms in London. The sensory rooms in London aren’t properly maintained, so I have only been to sensory rooms outside of London. But some people can’t travel that far or outside of London, so a sensory bus would make it easier by going to them. People haven’t thought of a sensory room in London to be on a bus, and there isn’t a sensory room with an interactive floor.

The most difficult thing so far has been getting enough people to pledge as I don’t have many connections. But it is a unique idea because there isn’t a sensory bus in London. If we could make this happen it would be a great achievement for me and would help lots of people in London.”

New campaign for autism-friendly libraries

Brody Ginn, who features in a training video to help create a network of autism-friendly libraries (pic: Dimensions)
Brody Ginn, in a still shot from a training video shot at Chelmsford library – the video is part of a new initiative to create a network of autism-friendly libraries (pic: Dimensions)

“Please be friendly and non judgemental. Don’t be shocked if I’m noisy and unpredictable. Smile, and please be nice to my mum, going out can be stressful for us all!”

“This is the way I am and sometimes I find it difficult not to talk to myself in the library so please be patient with me. Don’t keep staring at me. Please be kind to me.”

“Sometimes I can be noisy but I don’t like noise. Please don’t shush me or ask me to leave. These things hurt my feelings and can make me noisier. Be patient. Maybe even provide a small sensory room with soundproofing so I can calm down safely without causing problems with noise in your quiet library.”

These are among the comments made by people with autism as part of research that has led to a new campaign, launched today, for a network of autism-friendly libraries.

As I explain in a piece for the Guardian, a survey of 460 people with autism and their families by social care provider Dimensions suggests that 90% of people with autism would use their library more if adjustments were made.

Responding to concerns, Dimensions and the Association of Senior Children’s and Education Librarians (ASCEL) are collaborating to develop a network of autism-friendly libraries. The aim of the initiative – which is launching at the annual seminar of the Society of Chief Librarians – is to turn England’s 3,000 or so public libraries into more welcoming venues for people who have autism.

A poster available as part of the autism-friendly libraries campaign
A poster available as part of the autism-friendly libraries campaign

The drive, backed by £7,000 from the Arts Council, includes free resources for staff such as training videos, fact sheets, posters and social stories (short, informative descriptions of situations, so people know what to expect when they visit). The work in libraries builds on the model already developed by Dimensions with cinemas,

Being judged, being stared at or told to be quiet are among the main reasons people with autism and their families avoid going to their local library. “Libraries are quiet places so my son could make a noise and I would know others weren’t judging me as a parent,” as one parent told researchers developing the campaign.

In the current funding climate, with cutbacks to services and a downturn in borrowing, it makes financial sense to cater to more people, as well as creating a wider social benefit and encouraging inclusion and equality.

Libraries should be open to all sections of our communities, or as one person with autism explained about the experience of visiting the library: “Don’t tell me to shh! Or look at me like I am a criminal”.

* For more information about autism-friendly libraries follow #autismlibraries on Twitter or check the ASCEL or Dimensions websites