Tag Archives: charity

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.”

Everyone can dance: wheelchair dance in pictures

Nuno Sabroso & Daniele Oliveira, former wheelchair world dance champions, will perform at the WDSA event on Saturday.
Nuno Sabroso & Daniele Oliveira, who compete internationally together, will perform at the WDSA event on Saturday.

The Wheelchair Dance Sport Association (WDSA) celebrates its 10th anniversary on Saturday with a gala event at the Stratford Circus Arts Theatre. “Everyone can dance” is the charity’s motto and the gallery of images here reflects the organisation’s work with the dance sector and disabled people to enable everyone to dance, from beginner to elite level.

Dance, says WDSA patron Rashmi Becker, has no boundaries: “It is for everyone and can be enjoyed anywhere….Dance can make us think, smile, relate to one another, it can be a positive motivating force and simply, it is good for our well-being.”

All photos: WDSA

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For more information, watch the short film Motion, recently commissioned by WDSA:

What an ex-gangster taught me about standing up to stigma

Reformed hardman Chris  (centre) with Lol and his partner Clair at the Ley centre
Reformed hardman Chris (centre) with Lol and his partner Clair at the Ley centre

What do a mental health nurse and an ex-gangster have in common?

That was the question I was asking myself as I visited the Ley Community, a residential drug and alcohol rehab centre, with Chris Lambrianou, former henchman to the Kray twins.

I visited the Ley at the invitation of Chris, who volunteers at the centre; his life now is about as far removed from his past as is possible. The Krays ruled London’s gangland in the 1960s and were imprisoned for murder. Chris was present on the night Jack ‘the hat’ Mcvittie was stabbed to death. His presence and silence that night in naming Reggie Kray as the murderer resulted in Chris being jailed for 15 years.

Whilst in prison Chris, now 78-years-old, reflected on his life and the mistakes he had made. He wondered how he had found himself to be in such a position. Like many other prisoners Chris ‘found’ God. But unlike many others who use this as a cynical ploy to seek freedom early, Chris knew his life had to change and was determined to make that happen. He wanted to make a difference to others. On his release in the early 1980s he began working at the Ley. His voluntary work there includes accompanying people to court and generally giving them the encouragement to try and turn their lives around.

I had read about Chris’s work in his autobiography, The Kray Madness, and contacted him to discuss our mutual interest in helping people to turn their lives around. After a few phone calls, he invited me to Oxfordshire to a look around the Ley. The centre initially struck me as quite regimented, but it has to be that way to encourage the residents to make the efforts to come off drugs and show self discipline and determination. There is a strong emphasis on group discussions, peer pressure and support, openness and self responsibility.

We have different backgrounds and seemingly different areas of interest – me with mental health campaigning and Chris supporting the rehabilitation of people with addiction issues. Yet we both have a desire to use our life experiences to make a positive difference for others.

Chris has an influential role among young men because of his Kray connections, with much recent interest in his life thanks to the Tom Hardy film Legend – Chris advised on the movie. Chris is not volunteering as much at the Ley due to his age, but when he does he accompanies people to court, and generally encourages them to try to transform their lifestyles and behaviours. They see him as a positive role model and he can relate to them.

Supportive networks are vital to recovery and a focus on relationships is the theme of Mental Health Awareness Week next week. Social contact is the best way of breaking down barriers, misunderstanding, and ignorance of mental illness. It is important for us to have good relationships for our own mental health in the sense of talking and listening to each other.

My own work, for example, has been aimed at encouraging men to seek help early for mental health issues and self-harm. My most recent media advisory role was advising the storyline involving the ‘macho’ character Zak Dingle in TVs Emmerdale during his depression storyline.

Tragically we have very high rates of self-harm among young men in my native north east. Much of this is a consequence of the damaging ‘Big boys don’t cry’ attitude among men, and the damaging misperception that men expressing their feelings is a sign of weakness. This is something Chris would relate to in his own work.

Challenging stigma and addressing feelings of shame is something Chris and I share as a common goal.

Through social media, Facebook, and social contact, we are both starting to chip away at the damaging defensive layering common to all tough guys. We are trying to convince men who think they are somehow immune from mental illness that nothing could be further from the truth.

We have discussed the idea of a joint project, perhaps a book, to try to reach out to men in particular who self harm and feel stigmatised because of having mental illness. Together we are determined to make a difference; we have more in common then we think.

* You can find Lol on Facebook

How cuts affect disabled people: “We’re going backwards – and fast”

Public artwork from DaDaFest in January (photo: DaDaFest)
Public artwork from DaDaFest in January (photo: DaDaFest)

Coverage of the budget has been dominated by a focus on George Osborne’s headline-grabbing sugar tax, although it’s not quite enough to detract from the unfair deal for the embattled social care sector (check Twitter for #carecrisis to get a flavour of the feeling). The chancellor’s other measures are regarded as the ‘last straw’ for disabled people, already being hit by cuts, and he is now under fire from rebellious backbenchers opposing the £4.4bn cuts to disability benefits.

As Ruth Gould, the artistic director of the UK’s biggest disability arts event, DaDaFest, pointed out in an interview I did with her for the Guardian, the latest cuts threaten to make disabled people “more invisible”. The work of disabled artists, as she says, is also at risk, thanks to sharp reductions in funding from local authorities and Arts Council England (Ace).

In 2001, Gould organised a one-off community arts event for Liverpool city council to mark International Disabled Peoples’ Day. As the head of the North West Disability Arts Forum (NWDAF), Gould, who is deaf, argued a single day was inadequate, and designed a groundbreaking week-long festival.

Fifteen years on, DaDaFest is the UK’s biggest disability arts event and Gould its artistic director. The NWDAF eventually adopted the name of the jewel in its crown (“DaDa” refers to the initial letters of each word in the phrase “disability and deaf arts”), so DaDaFest refers to both the festival and its parent charity. Each biennial extravaganza draws 10,000 visitors and participants. It has launched the careers of comedian Laurence Clark and actor Liz Carr, and helped Liverpool win European Capital of Culture 2008.

Last week, as something of a curtain raiser to 2016’s two-week festival in November, DaDaFest held a seminar on the barriers to disability arts for black and minority ethnic people (BME). The awareness raising event complemented DaDaFest’s play, Unsung, recently performed at the Everyman theatre, based on the life of 18th century blind Liverpool poet, abolitionist and disability rights pioneer Edward Rushton.

Gould commends the Arts Council’s Creative Case for Diversity, launched in 2014 to encourage more BME, deaf and disabled people into arts, but fears such efforts are a drop in the ocean. She explains: “We don’t have the disabled people who put people on the stage – the producers, the casting directors, curators, decision makers.” She adds of DaDaFest’s recent BME seminar: “We tried to attract those we see as gatekeepers…[to] look at the barriers and issues and use them to try and influence change by identifying benchmarks that we can reflect onto to see if change if happening.”

Recent figures show just 2% of the arts workforce is disabled, an increase of 0.2% on previous year. With 19% of the UK registered disabled and the employment rate among disabled people at 46% (around 30% lower than the rate among able bodied people), this highlights the poor representation of disabled people in the arts.

You can read the rest of the interview here.

DaDaFest 2016 takes place in November.

Why the NHS needs more district nurses

The ageing population combined with the ongoing drive to keep people at home, not in hospital, reinforces the vital role of community nursing.

Yet as figures from the Royal College of Nursing show, the number of community nurses working in the NHS in England have almost halved in a decade; from 12,620 in 2003 to 6,656 in 2013.

As my piece on the Guardian website today explains, community nurses can be employed by NHS trusts, GPs, charities such as Dementia UK or private providers delivering NHS services. However, their numbers are falling. The decline might be attributed to primary care trusts transferring provision to other organisations under the government’s Transforming Community Services programme because those nurses moving to non-NHS providers are not captured in relevant workforce data.

The fall in numbers coincides with healthcare reforms that make their role even more important. “District nurses will be likely to play a significant role in the NHS reforms, particularly around new models of care that shift more care into the community,” according to Rachael Addicott, senior research fellow at health thinktank The King’s Fund.

Read the full piece here.

Potential, not prejudice: photo project challenges disability stereotypes

Mark, on his wedding day
Mark, on his wedding day

When newlywed Tessa got back to the hotel with husband Mark after their wedding, she found he’d arranged a surprise – he had scattered flowers and balloons around the room.

As Tessa recalls in a new project and book, Great Interactions by photographer Polly Braden: “I kept laughing at Mark – he was trying to throw the flowers around me…He’s happy now he’s married. We love each other. Being married doesn’t feel any different. That’s it. It makes me feel happy. Mark’s already got his name, so his wife will be Tessa Jane Ahrens, that’s mine and Mark’s choice. I used to be Warhurst – not anymore now. When my bus pass has run out they’re going to change my name on it.”

Tessa and Mark on their wedding day, Tring Church, Hertfordshire
Tessa and Mark on their wedding day, Tring Church, Hertfordshire

The couple’s story is one of many documented in Braden’s book and exhibition. The project aims to capture the daily lives of people with learning disabilities, from everyday interactions to landmark events like Mark and Tessa’s wedding. The book will be published next month and the images will also be featured in an exhibition at the National Media Museum, Bradford.

Polly Braden spent two years working with social care charity MacIntyre and the people it supports across the UK. The resulting work, refreshingly, offers a glimpse of the diverse, individual, ordinary lives of people with learning disabilities – around 1.5m people in the UK have a learning disability, but the population, usually seen as a homogeneous mass or single statistic, is defined by needs and lack of ability, as opposed to current or future potential.

Braden’s project also comes at a time when public sector funding cuts threaten vital support services and, as I’ve written before, families fear that the long-promised improvements to the care of people with learning disabilities may never happen.

Caroline and David, Holmewood Community Centre
Caroline and David, Holmewood Community Centre

Braden’s work does not gloss over the problems, but offers a different perspective. She explains: “The people I have met all have stories about the barriers, prejudice and ignorance they and their loved ones have faced in simply trying to have fair opportunities in life. But their stories are also inspiring and filled with heart-warming moments which would have seemed impossible to imagine earlier in their lives – from being active and using public transport to graduating from high school and getting married.”

Aja with Farah, MacIntyre No Limits, Oxfordshire
Aja with Farah, at an Oxfordshire support scheme
Raymond and Peter, Christmas Party 2014, Civic Hall, Ellesmere Port, Cheshire
Raymond and Peter, Christmas Party 2014, Civic Hall, Ellesmere Port, Cheshire

The photographer’s aim was to try to take photos about support “at the best it can be, but not to gloss over the profound problems in the provision of care and support and the challenges around this as well”. The project tries to look at what can be achieved for people when they are given good support, “and to talk about what happens when they are not”.

The aim of the project is “to challenge out-dated, institutionalised images and improve public awareness by recognising and highlighting the every day interactions and life changing experience of people with a learning disability”. It also focuses on social care professionals’ attitudes towards and relationship with the people they support. As one support worker, Raul, told Braden of the person he works with: “Mikey needs this kind of support: he needs to be around people who know and understand him, who are willing to go a step further and discover the bright and amazing person he is.”

Becky, Stephanie and Lesley, dance and movement class, St Elphin’s community centre
Becky, Stephanie and Lesley, dance and movement class, St Elphin’s community centre
Sarah and Zoe, Great Holm Coffee Shop, Milton Keynes
Sarah and Zoe, Great Holm Coffee Shop, Milton Keynes
Lucie, Milton Keynes Sports Centre
Lucie, Milton Keynes Sports Centre
Charles with Callum, MacIntyre School, Wingrave, Buckinghamshire
Charles with Callum, MacIntyre School, Wingrave, Buckinghamshire

* All photographs by Polly Braden, the book Great Interactions is out in March and the six-week exhibition at the National Media Museum, Bradford, opens on 27 February.
* To mark the book’s launch, the National Media Museum and MacIntyre are asking people to share photos of “everyday moments that make life matter” on Instagram, using the hashtag #IamMe – see the website for more information
* For more reading, see this Guardian feature published at the weekend..

This blog was amended on Monday 29 February to include the Great Interactions Live website

How ballet can break down barriers

An inclusive ballet session at  ballet school Flamingo Chicks (photo: Flamingo Chicks)
An inclusive ballet session at ballet school Flamingo Chicks (photo: Flamingo Chicks)

A Bristol-based dance project is spreading its inclusive arts campaign, training teachers to run ballet sessions for disabled children and their non-disabled counterparts.

UK-based Flamingo Chicks dance school ran pilot sessions in Ghana earlier this month (photo: Flamingo Chicks)
UK-based Flamingo Chicks dance school ran pilot sessions in Ghana earlier this month (photo: Flamingo Chicks)

My piece on the Flamingo Chicks dance school, which launched two years ago as a community interest company, is on the Guardian site today. Its weekly classes in Bristol, Leeds, York and London reach 1200 three to 19-year-olds with or without disabilities, and those with illnesses such as cancer. Classes offer access to mainstream dance activity (often, such classes are segregated), develop confidence, social skills, co-ordination, communication and concentration.

Now, the sessions are launching in Ghana – dubbed “the worst place in the world to be disabled” – sessions reaching 200 children and training 10 teachers to put on classes. Founder Katie Sparkes has contacts in Africa thanks to her work supporting charities with corporate social responsibility.

UK-based Flamingo Chicks dance school ran pilot sessions in Ghana earlier this month (photo: Flamingo Chicks)
A pilot dance session in Ghana (photo: Flamingo Chicks)

Sparkes says of the work in Ghana earlier this month: “We did lots of workshops with children aged two to 25 and also did a teachers’ training session where teachers and childcare workers from a variety of schools and orgs attended. We left them with lesson plans, equipment and a host of ideas. We’ve also set up an online ‘Global Chicks’ group where we can provide on-going outreach support. Any questions, ideas or motivation they need, our teachers will respond and coach them, also providing video tips or tutorials.”

Ballet, with its discipline and formal image, might not seem an obviously accessible art form, but Sparkes says it can improve body awareness, muscle strength and core stability. Its storytelling aspects and focus on character are also accessible.

Dance school Flamingo Chicks runs inclusive ballet classes for children of all abilities.
Dance school Flamingo Chicks runs inclusive ballet classes for children of all abilities.

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The school has eight teachers who focus on trips and performances as goals and benchmarks, instead of exams. The 45-minute or hour-long sessions include drama, dance and yoga using sensory equipment like feathers, dance ribbons, scarves and flashcards for deaf children, or hula-hoops to teach arm movements to a blind child. The relaxed atmosphere means children may wander around or makes noises without fear of flouting any rules.

There are an estimated 770,000 children with disabilities in the UK. Three quarters of families with disabled children feel so isolated that it has caused anxiety, depression and breakdown, according to charity Contact A Family. Four in ten (38%) parents of disabled children say their child ‘rarely’ or ‘never’ have the opportunity to socialise with children who aren’t disabled, according to a 2014 Mumsnet and Scope survey.

The full piece is on the Guardian’s social care network.

How English councils are supporting unaccompanied child asylum seekers

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.

Read on here.

Equal rights at the end of life for people with autism

Michael Baron, a National Autistic Society founder parent, whose son Timothy is 60, says of the concept of “a good death”: “At the age of 86, I want that for myself, but just as much I want that end of life conversation for people on the autism spectrum like my son.”

Michael, who is frequently asked to speak at conferences on the issue of ageing, autism and end of life care, has just contributed to what he calls “necessary and timely” guidance on end of life care for people with autism or a learning disability which is to be published on Friday – my Guardian piece here explains more.

The guidance from the British Institute of Learning Disability (BILD), Peaceful, Pain Free and Dignified: palliative and end-of-life-care for people on the autism spectrum, is unique due to its autism-specific focus and its step-by-step descriptions of how health and social care staff can offer better care.

“As his family, we don’t want the manner of Timothy’s death to be decided solely by others,” explains Michael. “He may be disabled and lack legal capacity but nonetheless, a ‘good death’ involves meaningful conversations [between individuals, families and staff] that acknowledge the absence of legal rights but the enduring presence of human rights. Families should be consulted [throughout end of life care] and no decision should be made which has not already been discussed, that is the minimum human right to which someone is entitled to.”

The UK is home to around 1.5 million learning disabled people, but the real figure, including the undiagnosed, may be higher. BILD says that by 2030, there will be a 30% increase in the number of adults with learning disabilities over 50 using social care (no figures exist for older autistic adults). This population faces health inequalities; the 2013 Department of Health-funded confidential inquiry into premature deaths of people with learning disabilities found that people die on average 16 years earlier than they should, because of poor diagnosis and treatment.

“We all wish for a pain free, peaceful and dignified end to our lives,” says Lesley Barcham, BILD’s ageing well project manager, “but for people with learning disabilities or autism, who may not be able to speak up for themselves, it can feel like this isn’t something they can control.”The publication stresses how autism or a learning disability affects end-of-life care. People may have verbal and non-verbal communication difficulties, for example.

Some support exists – advice on helping bereaved people with learning disabilities and the voluntary PCPLD Network (Palliative Care for People with Learning Disabilities) connecting disability and palliative care professionals – but learning disability end-of-life care has a low profile. A recent European Association for Palliative Care taskforce report on people with intellectual disabilities, describes “a largely invisible population with hidden needs”, warning of “a risk that their needs are therefore not seen as a priority, or even as a problem”.

As Ferguson says, there is a much wider question at stake. “It’s a much bigger issue about early diagnosis and early treatment planning for vulnerable individuals who struggle with self-advocacy…People with a learning disability or autism should have access to the same care that the rest of us do”.

* You can read more about how Timothy Baron and the first Society for Autistic Children – which became the National Autistic Society – in this good piece by his sister, Saskia, a journalist and TV producer.

Play is a post code lottery for deafblind children like Ruby

Ruby Barcham, her mother Lesley is campaigning for accessible play opportunities
Ruby Rogers, her mother Lesley is campaigning for accessible play opportunities

Guest blogger Lesley Rogers is chairing the charity Sense’s inquiry, The Case for Play into the lack of access to play opportunities for under-fives with multiple needs. Lesley is involved alongside co chair David Blunkett, the former education secretary, and Julie Jennings from RNIB as an expert advisor.

Play is an important part of childhood, it’s where children learn about the world around them, build relationships and friendships. But I know from experience with my eight-year-old Ruby that children with multiple needs often don’t get the same opportunities to play as other children.

Ruby was born with a rare condition called CHARGE syndrome and is consequently deafblind, she also has a heart condition and feeding problems.

We struggled from the very beginning to find appropriate play opportunities for Ruby. From finding accessible play groups to swimming pools and play parks. Every activity and opportunity for play has to be checked it’s accessible and appropriate beforehand, if it’s not, I have to ask for adaptations – and if those can’t be made, we can’t go and Ruby misses out.

But for children like Ruby, play is even more important. It was through play that we learnt to communicate with each other through basic sign language, through play Ruby is developing her muscle tone and through play she’s learning to connect with others around her.

We initially struggled to find appropriate play and activity groups. When Ruby was younger I wouldn’t take her to regular toddler groups, I felt vulnerable and isolated. I didn’t want to explain Ruby’s condition to other parents, and I wanted to go to places where I could meet people who would understand.

When Ruby was 18 months we were introduced to the deafblind charity Sense, it was a lifeline. We started going to the Sense play group, Sparkles, in Barnet. It used to take me 40 minutes to get there, but it was worth it. You didn’t need to explain to anybody what was wrong; if you came along with a feeding pump and a suction machine, it was accepted. I found everything I needed there, support from other parents and expert knowledge from staff.

Over the years I have spent so much time researching activities and play opportunities on the internet. I don’t want Ruby to miss out so I have thoroughly explored my borough but nowhere fully meets her needs. I’ve learnt that you have to be very proactive; I approach establishments, tell them about Ruby and ask if they are willing to make adjustments.

I hope that the inquiry will raise awareness of the challenges families like ours face every day. I hope that the government listens to the evidence and the recommendations that Sense presents and that appropriate changes are made following this. I hope that families get more support, particularly in the early years when parents could be feeling overwhelmed and confused. The earlier they receive help, the sooner they can provide the right support to their children.

With the right support, Ruby has the chance to enjoy play and leisure activities. She loves swimming. She goes once a week with school. It’s a great achievement that Ruby is able to attend the sessions. Ruby doesn’t like cold water so together with the school we contacted the leisure centre to see if they would be willing to open the jacuzzi and smaller warmer pool for us, we also needed an extra life guard and extra time in the changing rooms which they agreed to.

Ruby goes to the pool with her intervenor, her intervenor is basically her eyes and ears, she shows Ruby how to do things in a way that she understands. The intervenor will take toys into the pool, she’ll flick a ball to Ruby and Ruby will flick it back. Through swimming Ruby is strengthening her muscle tone, she’s also learning to socialise with her classmates which is great to see.

The most common barriers in terms of access to play settings for children with multiple needs is that there just aren’t enough places that are accommodating to children with multiple needs so accessibility is a big one.

There is a lack of information about play groups and activities that are suitable. For example we got introduced to Sense when Ruby was 18 months, it was a lifeline for us and I wish we knew about them earlier. Quite often you find out about things through word of mouth, this shouldn’t be the way. Parents need support as much as the children. It’s vital, particularly in the beginning.

Also I don’t often have confidence in the staff to leave Ruby with them. For example, I need to know that the staff can feed her and that they can sign. The reality is these places are few and far between, I have fully explored my borough and there is nowhere that fully meets her needs, this means I have to go with her all the time. Or use an intervenor.

What more can be done to boost such opportunities? Parents should have better access to information and advice on how to play with their child. Disabled children and their families should be involved in the design of play spaces and sessions to ensure they meet their needs.

There should be better training of staff and management at play groups etc. Often parents of children with complex needs have to come in and train staff how to care for their child’s medical needs. Every local authority should provide accessible play opportunities that meet a range of needs, in both specialist and mainstream settings.

All children and their families should have early access to support from specialist workers. Local authorities should make early intervention through play a funding priority.

A focus on play just isn’t seen as a big priority in the current financial climate. It’s turned into a kind of post code lottery for families, local authorities can now make their own choices about whether to prioritise play – some local authorities still have a local play strategy and continue to invest in play whilst others do not. This is despite the fact that funding early intervention and development is the best way to make a saving in the long term.

* Sense is calling for evidence from parents of children with multiple needs, specialists from the disability sector and practitioners. Visit the Sense website to get involved. For more information about the inquiry, email playinquiry@sense.org.uk