**Tania's note** The writer alternatively known as Mrboosmum has kindly provided us with this Friday's column The Launch of the Report of the Parliamentary Inquiry into Childcare for Disabled Children. With the new Education, Health and Care Plan starting at birth, this can be directly linked to the SEN reforms and the Early Years part of the new SEND Code of Practice and also the guidance on Supporting Children with Medical Conditions at School.
Mrboosmum is the mother of two children, one of whom has quadriplegic cerebral palsy and epilepsy as a result of his premature birth two years ago. She blogs about her experiences of raising her children over at Premmeditations.
The statistics make for grim reading.
Did you know it costs up to three times as much to raise a disabled child as it does a child without disabilities? That families with disabled children are 2.5 times more likely to have no parent working more than 16 hours a week?
Are you surprised that 16% of mothers of disabled children work compared to 61% of all mothers. Or that just 3% of mothers of disabled children work full time? [Source: Parliamentary Inquiry into Childcare for Disabled Children (2014)] I said they were grim statistics didn’t I?
I didn’t say that they were shocking, though. Appalling? Certainly. But shocking? Well … both as the parent of two children, one of whom has severe physical disabilities, and as a mother struggling to be one of the 3%, I’m not surprised at all. But why are these realities experienced by families such as ours and what are the effects on our children and their education?
These are two of the key questions that lie at the heart of the Parliamentary Inquiry into Childcare for Disabled Children launched and co-chaired by Robert Buckland and Pat Glass MPs and supported by Contact a Family, Every Disabled Child Matters, Family and Childcare Trust and Working Families. Over the past few months, the Inquiry has received over 1000 pieces of written evidence from parent-carers, testimonies from organisations that represent parent-carers and reports from local authorities. It also held three oral evidence sessions.
I feel privileged to have participated in one of these sessions in June. Earlier this week, I returned to Parliament with my fellow witnesses and sisters in arms to attend the launch of the Inquiry’s Report. The Report is an impressive piece of synthesis and advocacy. It is focussed on the needs of disabled children and their parents (many of whom are quoted throughout) and provides a clear assessment of the challenges to secure adequate and appropriate preschool or wraparound care for children with additional needs. The barriers to accessible and inclusive childcare are numerous. Clearly there are huge variations in provision across local authorities and even within the same local authority. But there are some depressingly recurrent problems. Cost is chief among them, as this infographic from Contact a Family vividly illustrates.
The Report also makes clear that questions of cost are directly linked to those of accessibility. Only 28% of local authorities report having sufficient childcare for disabled children. [Source: Parliamentary Inquiry (2014)]. And as the evidence submitted to the Inquiry distressingly shows, many settings (nurseries, after school clubs) routinely refuse to care for our children on the grounds of health and safety risks caused by medical conditions or equipment storage.
These problems only arise, though, if we can actually get our children through the doors of these settings. Stacie Lewis, who gave powerful oral evidence to the Inquiry, related the demoralising experience of being turned down by more than 50 nurseries and childminders when she tried to return to teaching after the birth of her daughter May. Many wouldn’t even show her around. But even if we can get over these financial and logistical hurdles, the question of resourcing childcare provision is difficult. Special educational needs training is patchy at best. And then there is the thorny question of 1-2-1 support.
Take, for example, my son. At the age of 2, he has little independent mobility. He cannot feed himself and is speech delayed. However, he is extremely bright and sociable, cognitively age-appropriate and keen to learn with his peers. But he cannot access the EYFS curriculum without 1-2-1 support. As a 2-year-old, his nursery has secured FEET funding to give him 15 hours of free term-time education a week (although in the extremely expensive private nursery that has taken him it is nothing like 15 free hours). And we have only very recently secured 15 hours of the 1-2-1 support he needs to take up this entitlement. But the 1-2-1 support is not guaranteed and every few weeks, it has to be reapplied for.
Every time, we are told we might be turned down. He would lose his entitlement. I would have to give up work. We would lose our home. With maybe a week’s notice. And we are the lucky ones. 41% of respondents to the Inquiry survey reported that their children were unable to access the 15 hours early education entitlement. Katherine Kowalski, another Inquiry witness, explained to shocked committee members that she has only been able to secure 6 hours a week term-time support for her 3-year-old son, Lawrence.
At the Inquiry launch on Tuesday I didn’t meet a single MP or peer who wasn’t deeply concerned by the Report’s findings. But many said in hushed tones, ‘of course these things cost money’. They do. So do state benefits. So does not collecting taxes from a willing workforce. So does not investing in early educational interventions in children. Children who might not be able to live independently or with minimal support as adults because they are debarred from early educational support, as Jane McCready brilliantly summarised at an oral evidence session. Or children who like Stacie’s daughter May would likely have been tube fed for the rest of her life, with all the surgical and other costs that entails, had she not had access to a setting where specialists taught her to eat from a spoon.
So how can we ensure our children are not excluded from their educational entitlement? How can we make wraparound childcare inclusive? And how can we help the parents of disabled children fulfil their financial, emotional and psychological need to work? The report makes a number of recommendations, chief among which are:
- The development of a cross-departmental action plan and funded programme to ensure affordable, accessible and appropriate childcare for all disabled children
- The piloting of more flexible financial support for parents
- Enforcement of the 2006 Childcare Act’s sufficiency duty
- Mandatory inclusion of special needs training in the new Early Years Educator qualification.
My sense is that there is considerable will to act upon these recommendations. But there are no guarantees. Ministerial agreement to look at the report could augur change or mean nothing at all. We need to keep the pressure on. Since the report’s launch I have heard of parents handing a copy of it to childcare providers and local authorities and asking for their response. Many will be writing to their MPs, the Education Select Committee, or Maggie Atkinson, Children’s Commissioner for England, who wrote the report’s foreword.
The statistics in the report didn’t tell me a great deal I didn’t already know. But what I have discovered through my participation in the Inquiry is that people who don’t live in the special needs jungle often don’t know what life is like here. And when we do tell them our stories they listen with concern, shock and a desire to change things. This report is, I hope, the first step in making this happen.
You can read the Report of the Parliamentary Inquiry into Childcare for Disabled Children in full here.
- Have a care for the carers working 100-hour weeks - December 8, 2017
- The failings that made our son’s special education EHCP transfer a nightmare - July 8, 2016
- How a grandma got a clothing giant to “adapt” and help families with disabled children - February 12, 2016