Category Archives: Charity

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Social Issue opinion piece: learning disabled people should have equal access to heritage and culture

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Amber Okpa Stother leads a creative workshop (photo: Martin Livesey, Venture Arts)
Isn’t it about time that learning disabled people enjoyed the same access to cultural lives and work as everyone else?

This is one question that Venture Arts (VA) and our speakers will be asking the heritage and cultural sectors at our symposium, Making the Case, at the Grand Hall, Whitworth Art gallery on the 25th May. VA is an organisation that specialises in visual arts in the North West.

“People with autism can do things like other people that don’t have autism in society. Society should be more accepting of people and not assume people can’t do things.” This is what Amber Opka Stother says – Amber (pictured above) chairs the VA steering group, has worked at Manchester Museum and arts centre HOME Manchester and is an ambassador for learning disabled people in the heritage and culture sector.

Our symposium will showcase the experiences of learning disabled people who have formed VA’s Cultural Enrichment Programme, funded through the Heritage Lottery Fund. The programme has seen over 20 people undertake 16 week work placements in some of Manchester’s best known cultural and heritage venues.

On the day we will also be seeing and hearing about other projects from across the country and highlighting areas of best practice.

“Unfortunately, our experience shows that people often don’t feel that big cultural institutions are for them or know how best to welcome people into their buildings. In my view we need to see more learning disabled people working within culture to be able to start to overcome this and make real change happen”, says Amanda Sutton, VA director.

This kind of inclusion makes sense, adds Amanda: “You are going to feel much more comfortable about going into a building, that can otherwise feel quite austere and foreboding, if you can relate to and identify with the people welcoming you and working within the venue.”

In 2015, researchers Lemos and Crane looked at learning disabled people’s access to museums and galleries (pdf). It stated: “Despite longstanding commitments to access, participation, learning, equality and diversity, museums, galleries and arts venues are not currently required by funders or policy makers specifically to promote access for people with intellectual disabilities as they are in relation to other groups…Mainstream arts organisations did not seem always to have a clear framework of good practice for improving access for people with a learning disability. This was perhaps the consequence of widespread uncertainty and anxiety among those with little personal or professional experience of people with learning disabilities.”

So Venture Arts aims to rectify this through working with cultural institutions to introduce learning disabled people to every aspect of their working operations. We reckon that if we can get people in “through the back door”, they will gradually change attitudes and integrate into institutions. Through our work so far, this has indeed happened. People have been back stage, in the conservation rooms, behind the scenes, delivering tours, in museum shops, in the staff room and are now well known by all the staff and visitors alike.

Here’s what Amber thinks about her experiences with VA so far:

At Manchester Museum, I volunteered and worked in the shop and in the postroom and in the vivarium as well. I ended up doing a tour for my friends and family which they really, really enjoyed, it boosted my confidence about speaking to people. It was really nice meeting lots of new people I did things that most people don’t . It’s nice to see the different parts of the museum.

People were, very welcoming and I think I am helping them to learn more about working with people with autism too, maybe like how people communicate or something.

Now I’ve started a new placement at HOME, an arts centre, which I’m really enjoying. We get to go behind the scenes and see how the cinema works which is really interesting and we have worked at the front of house and we get to see some free shows as well and that’s really, really good.

I think it’s important to have people with autism working in these places to see what great skills people have and how it makes a difference to volunteering. They will be more interested in employing people with autism, it will make a big difference.

On a personal level, it has helped me to be more confident and it’s helped me to become more confident in doing other jobs and things. I also work in a school and this experience has influenced how I am with the children, I feel more confident because I had to speak to people and that has lifted my confidence.

Last year I also delivered a workshop about making galleries accessible at a conference called Creative Minds and I loved every minute of it. I probably wouldn’t have been able to do this if I hadn’t worked at the Manchester Museum beforehand. There were a lot of people there too so I was really happy with myself.

I’m really looking forward to the symposium at the Whitworth as well and to interviewing people from museums and galleries. I’m going to interview them about the job and what we do. It will be really important to come to the symposium because you will get to hear about the great work that museums do with people with disabilities.

Even though I’ve got autism I try and do things that people without autism think that people can’t do like drive, I’ve passed my driving test that was a big achievement for me because I’ve always loved cars. People with autism can do things like other people that don’t have autism in society. We need to celebrate difference and make sure that people recognise what great things people with disabilities can do. I get upset sometimes if people don’t understand me, like my driving instructor who didn’t think I could pass my test. It’s important to listen so people can know what message people are trying to get across.

My advice for other museums? People have really great skills and they should give people the chance. People with disabilities can be really good at doing lots of great things and have skills that other people without a disability might not have, which can be valuable in a workplace. For example, people can be more understanding of other people.

It would make me happy to see people with disabilities working in museums because it’s good to see people with great skills doing a good job. If people give them a chance it would be a great place to start when people don’t feel comfortable about going into a museum.

Barriers for learning disabled people in going into a museum can be the staff of a museum because they might be a bit rude towards them or can’t understand if someone has no speech or something. It might not have a ramp or the lift might not be working or someone might be deaf as well so that could be a barrier. Museums should be more accessible to people with disabilities and people should make sure they don’t put jargon and put language that people understand on their walls.

I’m looking forward to the 25th to hear about what people are going to say. I’m looking forward to meeting everyone and to what people have to say about their experiences at the museums and it should be a great day.

Find out more about the Venture Arts symposium here or follow on Twitter, Instagram or Facebook.

Venture Arts symposium is on Friday 25 May in Manchester.

Access, Autism, Charity, Community, Disability, Learning disability, Travel

Making buses more accessible for learning disabled passengers

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For Mario Christodoulou, buses are essential. “I use buses every day to get to work and to the shops – it is my only way of travelling,” he says.

Christodoulou, from south-west London, is a peer advocate at learning disability charity Kingston Involve. As part of his work championing the rights of learning disabled people, he is involved in the Transport for London (TfL) Big Day Network, which holds learning disability awareness days in bus garages, bringing together learning disabled Londoners, their support staff, bus drivers and managers.

The network has 50 members from self-advocacy groups in London – 37 people with learning disabilities and 13 supporters – and has run events at 15 of the city’s 80 garages over the last three years in partnership with George Marcar, a TfL driver communications manager, surface transport. Discussions are held in a stationary bus, which helps people to visualise the issues raised.

Areas of debate include confusing signage or drivers being unaware of so-called “invisible disabilities” – to find out more, read the rest of my article in the Guardian.

Charity, Community, Disability, Health, Housing, Mental health, Social care, Third sector, Welfare, Wellbeing, Women

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

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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

Access, Autism, Charity, Community, Disability, Health, Housing, Learning disability, Tech, Uncategorized

What would a truly accessible city look like?

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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.

Charity, Community, Disability, Learning disability, Local government, Mental health, Older people, Research, Social care, Social enterprise, Third sector, Volunteering, Welfare, Wellbeing

Community approach to social work delivers more personalised care

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If you need social care support, why can’t services respond better to your individual aspirations – instead of fitting you into what’s already on offer?

This aim – shifting traditional social work practice to “community led” methods – is at the heart of a new programme I’ve just reported on.

Leeds is one of nine local authorities changing adult social care by developing community-led social work (in a nutshell – more local solutions). The councils are being supported in this drive by social inclusion charity National Development Team for Inclusion’s community-led support (CLS) programme. NDTi has just published an evaluation from the first year of delivery in the participating areas

Gail*, for example, has a learning difficulty, mobility problems and is prone to angry outbursts. Leeds council adult social care staff have supported her intermittently over a few years, helping with self-care and chaotic living conditions.

Recently, it considered commissioning weekly visits from a support worker to help Gail manage her home. But instead, under a new approach launched in Leeds last year, Gail met social work staff at community “talking points” – venues such as libraries and churches instead of at home or at the council. The neutral environment sparked different conversations about support. Gail said she wanted to volunteer and staff felt able to be more creative with her care.

A social worker supported Gail to explore opportunities at her community centre, where she began volunteering. Her self-esteem has grown, her personal appearance has improved and she has begun anger management classes.

Feedback from people like Gail involved in the new support method includes comments about staff such as “they listened to me” and “we did talk about the important things”.

The concept of community social work is not new, but demand for social care, pressure on staff and funding cuts mean less time and freedom to develop innovative solutions. The 2014 Care Act encourages community-focused support, but this has been hard to achieve. A difficulty in developing “strengths-based” solutions is well documented, for example, in recent guidance from Think Local Act Personal.

At Leeds, adult social services director Cath Roff says the council had two choices: “Either we go down the road of ever-tightening interpretation of eligibility criteria to manage resources, or try a new approach. Social work services are increasingly becoming the ‘border patrol’, policing in order to manage reducing budgets. None of us came into social care to do that.”

Read the rest of the piece here

*not her real name

Autism, Blogging, Charity, Crowdfunding, Cuts, Disability, Employment, Health, Journalism, Learning disability, Made Possible, media & communication, Research, Social care, Uncategorized

Scrounger or superhero, and little in between: learning disability in the media

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Scrounger or superhero – and little in between. This is how people like my sister, who happens to have a learning disability, are generally seen in society and the media.

The missing part of the equation is what led me to develop the book Made Possible, a crowdfunded collection of essays on success by high-achieving people with learning disabilities. I’m currently working on the anthology with the publisher Unbound and it’s available for pre-order here.

I’ve just spoken about the role of media in shaping attitudes to disability, and how and why is this changing at an event – Leaving No One Behind at Birmingham City University. The day was organised by the charity Include Me Too and community platform World Health Innovation Summit.

I wanted to support the event because of its aim to bring together a diverse range of people, including campaigners, families, self-advocates and professionals (check out #LeavingNoOneBehind #WHIS to get a feel for the debate).

This post is based on the discussions at the event, and on my views as the sibling of someone with a learning disability and as a social affairs journalist. I’ve focused on print and online media influences perceptions; broadcast media clearly has a major role – but it’s not where my experience over the past 20 years lies.

Firstly, here’s Raana:

With my sister Raana, (left) pic: Maya Gould

Raana’s 28. She loves Chinese food. She adores listening to music (current favourite activity: exploring Queen’s back catalogue – loud). She’s a talented baker and has just started a woodwork course. She has a wicked, dry sense of humour (proof here).

She also also has the moderate learning disability fragile x syndrome. She lives in supported housing and will need lifelong care and support.

The way I describe Raana – with her character, abilities first, diagnosis, label and support needs second, is how I see her. It’s how her family, friends and support staff see her.

But it’s not how she would be portrayed in the mainstream press.

Instead, this comment from the writer and activist Paul Hunt, reflects how she and other learning disabled people are seen:

Quote from writer and activist Paul Hunt

“We are tired of being statistics, cases, wonderfully courageous examples to the world, pitiable objects to stimulate funding”. Paul Hunt wrote these words in 1966 – his comment is 51 years old, but it’s still relevant (charity fundraising has changed since then, but the rest of the words are spot on – sadly).

Say the words “learning disability” to most people and they will think of headlines about care scandals or welfare cuts.

These reinforce stereotypes of learning disabled as individuals to be pitied or patronised. The middle ground is absent; the gap between Raana’s reality and how she’s represented is huge.

How often, for example, do you read an article about learning disability in the mainstream media which includes a direct quote from someone with a learning disability?

Stories are about people, not with people.

Caveat: as a former national newspaper reporter, I know only too well that the fast-pace of the newsroom and the pressure of deadlines mean it’s not always possible to get all the interviews you’d like. This is harder for general news reporters reacting to breaking stories than it is for specialists or feature writers who have just the right contacts and/or the time to reflect every angle of the story. But there’s still more than can be done – and much of it is very simple.

Take the language used in news and features.

There’s a huge amount of research shows how media influences public attitudes. One focus group project by Glasgow University a few years ago showed people thought up to 70% of disability benefit claims were fraudulent. People said they came to this conclusion based on articles about ‘scroungers’.

The real figure of fraudulent benefit claims? Just 1 per cent.

Research from Glasgow University on disability in the media

The language used in mainstream media is often problematic. I wince when I read about people “suffering from autism” – “coping with a learning disability” – or being “vulnerable”.

Images used in stories often don’t help.

As a quick – but very unscientific – litmus test – I typed the words “learning disability” into Google’s image search.

This is a flavor of what I found – the most common pictures that came up were the dreadful “headclutcher” stock image that often accompanies articles about learning disability.

Typical results from a Google image search on “learning disability”

These images say, defeat, frustration, confusion, negativity.

This is not how I see my sister, her friends or the learning disabled campaigners I know.

This is more how I see them:

Portrait of Martin Bell, used in my recent Guardian article

 
This shot is from a story I did a few days ago about Martin, Martin’s 22 and works part-time as a DJ at a local radio station (you can read about him here). Martin also happens to have a moderate learning disability and cerebral palsy.

We need more of this.

An obvious – but nonetheless important – point to make here is about the disability and employment gap. A more diverse workforce in the creative sector will impact on representation. Only 6% of people with learning disabilities work, for example, but around 65% want to (I wrote about this issue in the Guardian recently)

But there is cause for optimism. There is a slow but significant shift in the representation of learning disabled people thanks to the rise in grassroots activism, family campaigning, self-advocacy and the growing empowerment agenda.

Social media is helping spread awareness and spread a different narrative.

This rise in self-advocacy is what led me to develop Made Possible. The book’s aim is to challenge stereotypes; it targets a mainstream readership and introduces readers to learning disabled people in areas like arts, politics and campaigning. Their achievements are impressive regardless of their disability.

The book I’m editing, Made Possible, featured recently in the Guardian

While I’m researching the book, I’m trying to keep three words in mind – attitude, ability, aspiration:

Am I sharing experiences that help shift public attitudes?

Am I reporting people’s abilities, not just their disabilities?

Am I reflecting people’s potential – what do they aspire to achieve, and how can this happen?

And although I’m focusing on positive representation of learning disability, it’s worth stressing that there’s an equally vital need to highlight the challenges.

Challenges like the impact of austerity, for example, or the health inequalities, or the fact that over 3,000 people are still locked away in inappropriate institutional care.

The two go hand – a more authentic portrayal of people’s lives (their qualities, hopes and aspirations) and reporting the inequalities they face.

Because readers are more likely to care about the inequality and support the need to solve it if they feel closer to the real people experiencing that inequality – if they stop seeing learning disabled people as “the other”, or as statistics (as Paul Hunt wrote over 50 years ago..) and as people first.

It’s often said that media should reflect, serve and strengthen society. Which means we have to be more accurate and authentic about how we include and portray a huge section of that society – including my sister – which happens to have a disability.

Charity, Community, Cuts, Health, Mental health, Older people, Social exclusion, Third sector, Volunteering, Welfare, Wellbeing

Helpline for older people: a friendly ear to 10,000 lonely callers every week

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Anxiety and mobility issues mean that 76-year-old Anna Bolton* is usually housebound. But regular calls to a free, confidential helpline for older people have helped her “feel normal”.

Bolton’s mental health deteriorated after she was widowed two years ago. Although she has had some support from local mental health counsellors in her native north-east England, help from Blackpool-based The Silver Line was “invaluable” and more immediate than waiting months for a counselling referral.

The Silver Line, created in 2013 by Esther Rantzen (who also created Childline), is a free, 24-hour, 365-day-a-year helpline offering information and friendship, and signposts people to local organisations for support or social activities.

“There’s still stigma about mental health,” says Bolton. “It’s often easier to speak to a stranger, and nice to know you can call day or night.”

Bolton, who has no family nearby, contacted the helpline after it was mentioned by a receptionist at her GP surgery. She is among the 10,000 people who call the helpline – often referred to as the Childline for older people – every week.

For my full report on the charity and the rise in mental health issues among older people, see the Guardian social care pages.

Arts, Autism, Charity, Community, Disability, Health, Learning disability, Mental health, Music & arts, Older people, Social care, Third sector, Uncategorized, Volunteering, Welfare

Fresh perspectives on social care: a new exhibition

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What does someone who is supported by social care look like?

Transforming stereotypical perceptions of social care is the aim of a new photography exhibition showing in London this month – some of the featured images are shown below.

SELF Season 2 is a collaboration between photographer Dean Belcher and social care provider Certitude.

Everyone featured in the exhibition is either connected with Certitude or with activities offered by Age UK Hounslow, west London. The project’s ambition is to use imagery “to depict the commonalities between people within social care rather than reinforcing the often-imposed barriers and roles that people are given”.

The new show follows the success of an exhibition (SELF: Portraits in Social Care) held in Brixton earlier this year.

* SELF: Portraits in Social Care is running until Thursday 28th September at Montague Hall, 30 Montague Rd, Hounslow TW3 1LD, Monday to Friday 3pm – 5pm. For further details, contact jmeyer@certitude.org.uk

Charity, Disability, Employment, Learning disability, Third sector, Uncategorized

How to get more learning disabled people into paid work

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When I recently met Anthony Knight, an arboretum horticulturalist at Kew Gardens, his enthusiasm for work was infectious. Anthony’s knowledge about plants and trees is impressive – as is the determination with which he’s pursued his passion for gardening.

It took him nine attempts over five years before finally landing the job in November, despite having done work experience and an apprenticeship at the world-renowned botanical gardens in south-west London.

While in theory Knight, 38, was a strong contender for the job – having previously worked at Kew, at a local nursery and in garden maintenance – he has a moderate learning disability that affects how he communicates, so job interviews were a barrier. “I was not able to portray myself in the best possible light,” he says.

Knight was only successful once Kew adjusted the application process, giving him more information about the general subjects to be covered so he could better prepare for the interview. He also had support from learning disability charity Mencap.

As someone who has a learning disability and is in paid employment, Knight is rare. In the UK, just 5.8% of people with a learning disability who are known to social care services are in paid work, compared with 74% of non-disabled people. But the most up-to-date figures from a 2009 government report show that 65% of learning disabled people want paid work but have been unable to get a job.

There’s also a growing call for more people with learning disabilities to have a paid role at and a stronger influence on the kind of organisations that support them.

For more, read the full piece here.

Autism, Charity, Disability, Learning disability, Race, Social care, Social exclusion, Third sector, Young people

Prejudice and inadequate support: the situation for minority ethnic children with learning disabilities

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Callum and Parmi Dheensa (photo: Parmi Dheensa)

When Parmi Dheensa’s son Callum kissed a classmate on the cheek not long after starting at a special needs primary school, a teacher asked his mother if this was “culturally appropriate”. Dheensa said that as long as the classmate was happy, nothing in her son’s Punjabi heritage forbade such displays of affection.

It is just one example over many years of professionals leaping to incorrect conclusions based on the ethnicity of her severely learning disabled son, who is now 19, says Dheensa. They also assume she does not work and is supported by an extended family when in fact she is a lone parent who works full-time. Dheensa, 43, was once told that her son’s support – he lives at home and is at a special school – was “better than it would be in India”. Fair point maybe, she says, but irrelevant to a British-born, Midlands-based family.

My Guardian article focuses on Parmi’s charity, Include Me Too, which works with 1,500 families a year. It has launched a campaign for the government to review its equality duties in relation to special needs education and support for BAME communities.

The charity has now launched a campaign asking the government to review BAME representation in government decision-making (existing involvement is, says Dheensa, “tokenistic”) and a new disability and equality strategy to ensure families get better support. The criticism is that professionals do not fully involve parents in reviews of the support they require, or in drawing up education, health and care plans, and parents or carer forums are predominately white British.

Read the article on the Guardian website.