Childcare for disabled children: MPs and peers hear from parents

By Richard Dunstan, Policy & Parliamentary Campaigns Officer

As a campaign-toughened and – I confess – somewhat cynical policy wonk, I am not often moved to tears by anything I might hear in the House of Commons.  Tales of legislative failure and implementation deficit, shameless ministerial denials of responsibility, and the impenetrable fog of official statistics are more likely to leave me with a wry ‘seen-it-all-before’ smile and a craving for a strong gin and tonic to dull the pain. But on Tuesday, in the space of two hours, I several times came close both to blubbing, and to punching the air in admiration.

The occasion was the second oral evidence session of the Parliamentary Inquiry into Childcare for Disabled Children, led by MPs Robert Buckland and Pat Glass. And the Inquiry panel – including Baroness Eaton and MPs Teresa Pearce, David Ward and Sarah Champion, as well as Robert and Pat – was hearing evidence from disabled student Sam Sillars, and five mothers of a young disabled child.

Sam is 17 and studying for her GCSEs at a mainstream school. She uses assistive technology to help her communicate, and was a member of the VIPER project into disabled children and young people’s participation in decision-making about local services. Sam spoke eloquently of the need for providers of inclusive activities to treat disabled young people as individuals, and to consult them on what activities they would like to do. All to often, Sam has been presented with activities chosen and designed by others, on a ‘take it or leave it’ basis.

The Inquiry panel then heard from Hannah Postgate and Katherine Kowalski. Hannah’s seven-year-old daughter Rosy – who also attended the evidence session – has autism and learning difficulties. At the end of her maternity leave, Hannah had tried to return to work flexibly, but her employer (a local authority) refused her flexible working request and, unable to find appropriate and affordable childcare, Hannah was forced to give up her career.  The only way Hannah has been able to return to the labour market has been by becoming self-employed and running her own business – selling toys and other products for families with special needs – from home.

Katherine’s three-year-old son Laurence has complex disabilities and epilepsy. Katherine, who blogs about her experience as @SeasideScribe, told the Inquiry panel:

“We have had to rely on my mother to care for Laurence while we both work, since there has been no childcare available that can cater for Laurence’s needs. Even now, with Laurence aged three, we have only been able to secure six hours per week at a nursery, and that during term-time only. Laurence needs one-to-one support while at nursery and the local authority say they cannot provide any more.

This seems to be breach the Equality Act, in that children without additional needs are entitled to 15 hours per week of childcare. Without my mother to care for Laurence, we would have lost our home and ended up on the council housing list. I know several families who have had this happen to them, purely because adequate childcare for their disabled child has not been available.”

Katherine’s point that parents of disabled children being forced out of their jobs and homes because of a lack of appropriate, affordable childcare amounts to discrimination and denial of equal opportunities was then echoed in the evidence of Jane McCready and her son Johnny, Stacie Lewis, and ‘Louise’ (not her real name).

Johnny is 11 and has severe autism and learning difficulties. Jane spoke movingly of how she had had to give up her career in the City to care full-time for Johnny as she found it “very, very difficult to find any childcare provider willing to take Johnny due to his communication and behavioural challenges”. As well as being a “hard-working parent carer”, Jane now also runs the ABA4All campaign to improve early autism education.

Noting that just three per cent of mothers of a disabled child return to full-time paid employment, Stacie, who blogs about her experience as @MamaLewisBlog and whose six-year-old daughter May suffered severe brain damage from oxygen deprivation during birth, told the Inquiry panel:

“We struggled to find a childcare provider who would take May. A child like May costs more money because she requires more supervision, time and equipment. But the government was not forthcoming with help. I was told that my returning to work was a lifestyle choice. There is no statutory requirement [on childcare providers] to take children like May, even in State-run nurseries. And then, only weeks after we finally found a nursery that would take May, the council cut all funding for her one-to-one care. A long fight ensued, that we won. But, if the funding had not been re-instated, May wouldn’t have been able to attend and I would have had to quit my job.”

Last – but by no means least – Louise, who blogs anonymously as @premmeditations and whose son Charlie (not his real name) has quadriplegic cerebral palsy, told the Inquiry panel:

“In order for Charlie to be at nursery, he needs one-to-one care. His condition means that he cannot move independently at all, feed himself, or access toys or activities or play with his many friends without support. Since he started at nursery we have tried three different funding pots to try and get one-to-one support. Now the nursery has to apply for this funding every 16 weeks. It’s a major source of anxiety, because every 16 weeks we face the fact that I might have to give up work at little notice. Every 16 weeks, I face the possibility of us losing our home. This is a human rights issue.”

The Inquiry panel members were clearly as impressed by this evidence as I was. As Sarah Champion MP noted at one point: “I believe you, but I find it unbelievable”.

The Inquiry has one more oral evidence session – with Department for Education officials – next week, and is set to publish its report on 8 July. And the importance of the Inquiry’s work was illustrated only yesterday, when the think tank IPPR managed to make a well-researched and detailed proposal for a system of universal affordable childcare, without once mentioning the additional challenges faced by, or the special needs of, the parents of Britain’s 700,000 disabled children.

That is what the Inquiry panel hopes to change.

Update (24 June):  Since I posted the above, three of the mothers who gave evidence to the Inquiry panel last week have written and published their own superb posts. You can read the post by ‘Louise’ (@premmediations) here; the post by Katherine Kowalski (@SeasideScribe) here; and the post by Hannah Postgate (@RosyandBo) here.





Parliamentary Inquiry to shine a spotlight on childcare for disabled children

By Richard Dunstan, Policy & Parliamentary Campaigns Officer

Hannah is mother to seven-year-old Rosy, who has autism and learning difficulties. Hannah says that appropriate, affordable childcare is a real problem in her area, and is getting worse:

“There is simply not enough childcare that is appropriate for children with special needs. You can’t share pick-ups and play-dates after school, or exchange childcare in the way that you can with children who do not have special needs or disabilities. I would like Rosy to be included in a mainstream after-school club or holiday play scheme, so that she can go with her brother who does not have special needs. But I have to find private provision prepared to take Rosy, and then look for a carer to go with her, which makes it expensive.”

Sadly, the problems faced by Hannah are all too common in Britain today. And, despite the growing political and public debate around childcare –  in recent months, barely a week has gone by without the announcement of new research or survey findings on the subject  –  the childcare needs of parents of disabled children has received almost no attention. Yet we know that:

  •  66 per cent of parents surveyed have paid more for childcare for disabled children than for non-disabled children.
  •  Parents with disabled children report paying two to three times as much as the standard hourly childcare rate – up to £20 per hour – compared to a national average of £4.25 for a child aged two to four years old.
  • Only 28 per cent of local authorities in England say they have enough childcare for disabled children.
  • Just 40 per cent of parents of disabled children believed that childcare providers in their area could cater for their child’s condition.

No wonder then, that only 16 per cent of mothers of a disabled child are in paid work, compared to more than 60 per cent of mothers generally. And that families with a disabled child are 2.5 times more likely to have no parent working for more than 16 hours per week. In the words of Sarah, mother to “a lovely non-toddling toddler with an undiagnosed genetic condition”:

“I worked long and hard to get a career that I care about.  It enabled me to give my son financial stability and a plan for the future.  It enabled me to have time away from the immense responsibility of being a ‘carer’.  It gave me a chance to miss him and remind me how very precious our time together is.  But despite an epic battle to rival Waterloo, I have had to leave my job.  Why?  Because there was absolutely zero affordable childcare available to me, even on a three day per week basis. This is purely because of my son’s disabilities.”

As Sarah concludes, this is “just not right”.  But it’s also a false economy. Britain needs women like Sarah to remain in the labour market if we are to recover from the worst economic recession in living memory.  And for that to happen, parents like Sarah and Hannah need local access to childcare that is appropriate, affordable, and of good quality. Such childcare helps children form new friendships, supports participation and good educational outcomes, and helps parents to balance caring, their own well-being, and work.

That’s why MPs Robert Buckland and Pat Glass have just launched an independent Parliamentary Inquiry, to shine a spotlight on the problems faced by families with disabled children, and to ensure that the issue of childcare for disabled children becomes part of the on-going political and public debate about childcare more generally.

Robert and Pat know, from their own experience, how disabled children and their families benefit when services are inclusive and meet their needs. And they know how important it is that children with additional needs are well-served by childcare provision going into the future.

The Inquiry is supported by Contact a Family, Every Disabled Child Matters, the Family & Childcare Trust, and Working Families, and welcomes evidence from families, professionals, and stakeholder organisations. It is expected to report by the end of July – that is, in time to feed into the party manifestos for the General Election in May 2015. You can find out more, including details of how to submit evidence (by 9 June), on the Inquiry’s website.

The launch of the Inquiry has already sparked several fabulous posts by blogging parents of a disabled child.  MrBoosMum writes:

“Let’s make ourselves heard in this Inquiry. Let’s tweet and write to our MPs. Let’s complete the survey. We have evidence aplenty. We deserve to be listened to, because our kids deserve to be heard and seen and accepted. Because inclusion should be a reality rather than an aspiration.”

Hear hear to that. And Sarah – already quoted above – says in her latest post:

“This Inquiry is our chance to speak up and be heard.  Our chance to bring about change.  So let’s make it count.  Let’s make sure that the next generation of parents stepping into our already challenging shoes are not faced by the same frustration, financial fears and inequality.”

But I’m going to end with the words of mother and blogger Itssmallsworld, who speaks for tens of thousands of parents when she says:

“We want to work, we want to be able to afford to work, we would like to contribute. We have years of experience stored up to be used. We have something to give. Let us. Enable us. Because the value you will gain from us – emotionally, financially – has got to, just got to, outweigh the costs – emotional, financial – of neglecting us.”