Are disabled children being refused the right to an early years education?

Every child is entitled to 15 hours of early years education each week. But when Stacie Lewis tried to place her disabled daughter in a nursery, she found she had a fight on her hands

Five years ago, I stood in the reception of our local primary. Rated "outstanding" by Ofsted, I hoped they would take my daughter into their attached Sure Start nursery. They not only refused to take her, they refused even to show us around. My daughter was one year old with gorgeous rolls of podge and an infectious laugh. She was also disabled.

According to the Department for Work and Pensions, there are 800,000 families in the UK with a disabled child. But research by the Papworth Trust has revealed that only 16 per cent of women with disabled children can return to work – and even then only 3 per cent full-time – compared to 61 per cent of mothers who don't have disabled children.

These children are being refused the right to an early years education and, as a result, their mothers are being denied their basic right to work and provide for their families.

When my daughter, May, was born severely disabled I wouldn't have called myself lucky. I would now. Unlike 84 per cent of women like me, I wasn't forced out of my job.

Five years ago, I wrote about my daughter for The Independent. "May is a delightful baby... she is an absolute pleasure. She remains unaware of the dire predictions for her future. Rather than lie in her cot, totally unresponsive, she took up Olympic-level bouncing and gorgeous squeals of pleasure at the sound of birdsong."

Naively, I thought other people would see her potential, too. In the end, we had the demoralising experience of more than 50 nurseries and childminders refusing to take her. There is no statutory requirement for even state providers of childcare to take disabled children, so they had no issue turning us away.

The primary that refused to show us around advertised that they prioritised special needs for admission. I asked for a copy of this admission policy but they admitted there wasn't one. They made us jump through hoops for months and then, when pressed, told us prioritising May would be "unfair on other parents". As an "outstanding" school, they made the outrageous claim that May only needed to attend nursery so I could work, not for any developmental benefit.

Finally, May was accepted at another nursery. Then, a month before I was meant to return to work, that nursery pretended they hadn't accepted her. They put her on a waiting list that we later discovered didn't exist. She was the only one on it and she never came off.

I can remember days on the phone sobbing, as I literally begged nurseries to take her so that I wouldn't lose my job.

When I spoke to my local council about it, they treated my return to work as frivolous. In contrast to endless political rhetoric about how mothers should return to work, these Government officials fought us every step of the way. They discouraged me and called returning to work a "lifestyle choice" as opposed to the economic imperative it felt like to us. Earlier this month, I participated in a Parliamentary Inquiry into childcare for disabled children chaired by the MPs Pat Glass and Robert Buckland. There, I heard stories from mothers across the country whose children were also denied their basic right to an early years education.

Stacie and May Lewis at their home in 2010 (Richard Mildenhall) Stacie and May Lewis at their home in 2010 (Richard Mildenhall)
Every three-year-old across the county is entitled to 15 hours of free childcare a week. In case after case, disabled children are denied this because the funding allotted doesn't cover the extra costs.

Children such as May are expensive. They need more supervision, training for staff, equipment and even changes to the infrastructure of buildings. When Government funding is made available, it isn't ring-fenced and nurseries and families are aware that it can be snatched away in a second.

The charity Contact a Family recently published research based on over 2,000 families with disabled children. Again and again, they heard from parents who said nurseries refuse to take these children unless parents cover the difference in cost; 82 per cent of parents surveyed paid significantly more towards childcare with over a third paying eight times more.

In our case, we paid £400 a month more than other families in the area.

But we were lucky. We had childcare. And then, only a month after May started, our local council sent this brief email to the nursery: "Unfortunately there is no budget now to pay for 1.1 support. Sorry!" With immediate effect, it cut May's one-on-one care. The nursery could not supervise May safely without this funding, and we couldn't afford the difference. I would have to quit my job.

Weeks of fighting, including an inquiry by our local councillor, forced its reinstatement. But soon after, the council sent an email to every nursery and primary school in the borough stating that it "will only be able to offer advice and guidance not 1:1 support, equipment or childcare" for any new case of a child under six with a disability or medical need.

At the Parliamentary Inquiry, I met Katherine Kowalski who had lived a few streets away from me when her son, who is two years younger than May, was born. Despite her son's complex medical needs, he was refused the very funding that we fought so hard for. Her family was forced to sell their home and move across the country to access childcare so that she could continue to work.

And yet, keeping our jobs is only one aspect of why childcare is important. For children, the benefit is enormous. At nursery, May interacted with other children in a stimulating environment led by experts in early years education. Previously, such situations had caused her severe anxiety. Moreover, she learned the basics, such as how to eat from a spoon.

It shows how shortsighted not funding these children is. May is no longer tube-fed – depending on the Government to provide specialised liquid meals, surgeries to insert the tube, endless NHS visits over infections and the lack of a normal diet.

Nursery taught her to eat from a spoon and, now, May's eating will cost our country nothing. For the rest of her life.

The most unexpected benefit was not for May at all. The nursery called caring for her a "privilege". Parents told me that their children came home singing songs about May. Children rushed to her side cheering when I wheeled her into the room. They brought her toys and turned the toys on when she couldn't do it herself.

Is this not a basic value of human decency that we want to instill in our youth? May attends a special-needs primary now. Nursery is the last chance for our children to fully engage with a severely disabled child.

Last week, I phoned the same "outstanding" primary that wouldn't even show us around. They continue to advertise that they prioritise special-needs cases. I explained that my daughter was disabled as if she were still that baby, five years ago. Their admissions policy had not changed in the slightest – meaning, there was no policy. But they did attempt to reassure me. There was no need for a policy; as long as they felt they could accommodate her needs, my daughter could probably attend.

How can a state-run nursery, housed in a completely accessible new-build school, be rated "outstanding" by Ofsted if it can't accommodate a disabled child?

The children at nursery loved May. Well, I love May, too. But it is not enough that she had access to childcare. All our children deserve that kind of affection and stimulation.

Stacie Lewis writes at mamalewis.com. Twitter: @mamalewisblog

News
people

Actress sees off speculation about her appearance in an amazing way

Arts and Entertainment
Serge Pizzorno of Kasabian and Noel Fielding backstage at the Teenage Cancer Trust concerts
musicKasabian and Noel Fielding attack 'boring' musicians
News
peopleLynda Bellingham's tragic final Loose Women appearance moves audience to tears
Arts and Entertainment
'Right Here' singer Jess Glynne is nominated for Best Newcomer at the MOBO Awards 2014
musicExclusive: Jess Glynne hits out at 'ridiculous' criticism of white artists nominated for Mobo Awards
PROMOTED VIDEO
Life and Style
ebooksA superb mix of recipes serving up the freshest of local produce in a delicious range of styles
Life and Style
ebooksFrom the lifespan of a slug to the distance to the Sun: answers to 500 questions from readers
Arts and Entertainment
Separated at birth? Frank Sivero (left) claims The Simpsons based Mafia character Louie on his Goodfellas character
arts + entsFrank Sivero sues Simpsons studio over allegedly basing mobster character on Frank Carbone
News
Carl Bernstein (left) and Bob Woodward (right) with former 'Washington Post' executive editor Ben Bradlee
people

The Washington Post editor helped Bob Woodward and Carl Bernstein bring down President Nixon

News
news

Voices
Stephanie first after her public appearance as a woman at Rad Fest 2014
voices

Arts and Entertainment
Laura Wood, winner of the Montegrappa Scholastic Prize for New Children’s Writing
books

Children's bookseller wins The Independent's new author search

Latest stories from i100
Have you tried new the Independent Digital Edition apps?

ES Rentals

    Independent Dating
    and  

    By clicking 'Search' you
    are agreeing to our
    Terms of Use.

    iJobs Job Widget
    iJobs General

    Database Administrator

    £300 - £350 Per Day: Clearwater People Solutions Ltd: The role could involve w...

    Science Teacher

    £21000 - £35000 per annum: Randstad Education Cambridge: Qualified secondary s...

    Deputy Head of Science

    £22000 - £36000 per annum + MPR / UPR: Randstad Education Southampton: Our cli...

    Finance Manager - Recruitment Business (Media & Entertainment)

    £28000 - £35000 per annum + negotiable: Sauce Recruitment: We have an exciting...

    Day In a Page

    Indiana serial killer? Man arrested for murdering teenage prostitute confesses to six other murders - and police fear there could be many more

    A new American serial killer?

    Police fear man arrested for murder of teen prostitute could be responsible for killing spree dating back 20 years
    Sweetie, the fake 10-year-old girl designed to catch online predators, claims her first scalp

    Sting to trap paedophiles may not carry weight in UK courts

    Computer image of ‘Sweetie’ represented entrapment, experts say
    Fukushima nuclear crisis: Evacuees still stuck in cramped emergency housing three years on - and may never return home

    Return to Fukushima – a land they will never call home again

    Evacuees still stuck in cramped emergency housing three years on from nuclear disaster
    Wildlife Photographer of the Year: Intimate image of resting lions claims top prize

    Wildlife Photographer of the Year

    Intimate image of resting lions claims top prize
    Online petitions: Sign here to change the world

    Want to change the world? Just sign here

    The proliferation of online petitions allows us to register our protests at the touch of a button. But do they change anything?
    Ed Sheeran hits back after being labelled too boring to headline festivals

    'You need me, I don’t need you'

    Ed Sheeran hits back after being labelled too boring to headline festivals
    How to Get Away with Murder: Shonda Rhimes reinvents the legal drama

    How to Get Away with Murder

    Shonda Rhimes reinvents the legal drama
    A cup of tea is every worker's right

    Hard to swallow

    Three hospitals in Leicester have banned their staff from drinking tea and coffee in public areas. Christopher Hirst explains why he thinks that a cuppa is every worker's right
    Which animals are nearly extinct?

    Which animals are nearly extinct?

    Conservationists in Kenya are in mourning after the death of a white northern rhino, which has left the species with a single male. These are the other species on the brink
    12 best children's shoes

    Perfect for leaf-kicking: 12 best children's shoes

    Find footwear perfect to keep kids' feet protected this autumn
    Anderlecht vs Arsenal: Gunners' ray of light Aaron Ramsey shines again

    Arsenal’s ray of light ready to shine again

    Aaron Ramsey’s injury record has prompted a club investigation. For now, the midfielder is just happy to be fit to face Anderlecht in the Champions League
    Comment: David Moyes' show of sensitivity thrown back in his face by former Manchester United manager Sir Alex Ferguson

    Moyes’ show of sensitivity thrown back in his face... by Ferguson

    Manchester United legend tramples on successor who resisted criticising his inheritance
    Two super-sized ships have cruised into British waters, but how big can these behemoths get?

    Super-sized ships: How big can they get?

    Two of the largest vessels in the world cruised into UK waters last week
    British doctors on brink of 'cure' for paralysis with spinal cord treatment

    British doctors on brink of cure for paralysis

    Sufferers can now be offered the possibility of cure thanks to a revolutionary implant of regenerative cells
    Ranked seventh in world’s best tourist cities - not London, or Edinburgh, but Salisbury

    Lonely Planet’s Best in Travel 2015

    UK city beats Vienna, Paris and New York to be ranked seventh in world’s best tourist destinations - but it's not London