Hannah Postgate, a mother of two from Cambridge, has two children, aged seven and five. Before her daughter Rosy started school the siblings attended nursery together. The bill for Rosy's attendance, at £85 a day, was more than twice that for her brother.
Rosy has autism and learning disabilities and needs one to one care to allow her to participate in the activities and curriculum on offer.
She is delighted that the subject is now the focus of an Independent Parliamentary Inquiry, which is asking parents to share their experiences of finding childcare for disabled children. These will help inform recommendations to be presented to the Government in July.
Research collected by the umbrella organisation Every Disabled Child Matters, which is overseeing the Inquiry, has previously found that less than half of parents of disabled children felt there was childcare in their area suited to their family's needs. Around two thirds paid more for childcare for their disabled children than for those without disabilities.
Local authorities also recognise there is a problem with only 28% saying they have enough childcare to cater for disabled children in their area.
"Lots of mothers in particular are having to give up jobs they want and have worked hard for. It is a massive barrier to mothers returning to work," says Hannah. "We need better access to specialist childcare and it should be as affordable as it is for children without disabilities. A family shouldn't be penalised financially – that is discrimination."
Hannah did initially return to work for her local city council – a job she had loved – but the difficulties in arranging flexible working and affordable childcare soon lead to her leaving.
"I had no option but to stop work even though I didn't want to," she says. "We had a make a clear decision about what that meant for us – from a career point of view, financially, socially. I became very housebound."
Hannah had found a childcare setting which was appropriate for Rosy – something she points out is often not the case – but the cost, which was even greater outside school term times, was prohibitive.
Rosy had been attending a private day nursery before her diagnosis, and as she was well settled there and knew the staff and routines, the family were keen for her to continue there. The nursery too were very happy to have Rosy (again, something Hannah knows from friends in similar situations is not always the case) with a one to one helper.
"The staff knew and loved her, she felt secure there and knew the layout and how it all worked," she says. "She was happy and well cared for and with individual support she got a lot out of it."
Sadly though, the shortfall between the funding which had been granted for Rosy and the actual cost was too much to be viable for the family.
"The funding only covered term time which meant that in the school holidays we couldn't send her unless we sent someone with her – she simply could not have coped otherwise. With 13 weeks of school holidays it was incredibly expensive."
Despite their reservations about disrupting Rosy's routine – something particularly difficult for children with autism – the family did look for alternative, cheaper childcare outside the private sector.
"Frankly there wasn't a great deal around," says Hannah. "We were offered something a 40 minutes drive from our home, but it wasn't logistically manageable." A suitable holiday club would have cost £164 a day (the cost of the club plus a helper for Rosy).
Hannah was recently asked to speak on the subject on BBC Radio 4's Woman's Hour and was saddened to hear that so many other families had had similar experiences.
"Local authorities have a duty to have regard for providing suitable childcare for children with disabilities and special needs. It is not statutory and it needs to be. There is very little and what there is is often over-subscribed and very general. It is a dump them all in together, one size fits all approach which doesn't work."
"Some of it was basically glorified baby-sitting.
In addition to the lack of formal childcare, parents of children with additional needs often cannot rely on the informal arrangements many families find invaluable – play dates, childcare swaps, drop in sessions and so on.
"Rosy's grandmothers have been amazing but it is much harder for relatives and friends to help out. I don't have the network for Rosy which is so easy to set up for my son."
Good quality childcare is important not only in allowing parents to work, says Hannah, but also for the development and wellbeing of the child and the rest of the family.
"Going to nursery allowed her to develop and practise social skills, sharing, turn-taking and so on. Those lessons are on offer to other children, but often not to those who need it the most."
Last year Hannah set up a website selling toys and products for children with special needs. "Parenting a child with disabilities is extremely tiring. Everything is a battle – the healthcare, education, childcare. You need a bit of a break and for me work provides that."
One of the charities urging families to share their experiences with the Inquiry team is Contact a Family, which supports families of disabled children. Head of Policy and Campaigns at the charity, Una Summerson, says many parents calling their helpline are struggling with childcare.
"Often they are juggle complex care arrangements and family life against the odds," she says. "Too often they are forced out of the labour market due to higher childcare costs and provision that is unsuitable. Coupled with the significant extra costs associated with raising a disabled child this leaves many families struggling on low incomes with no choices.
"More needs to be done to tackle the lack of affordable and quality childcare choices for disabled children and young people."
One mother who agrees change is needed urgently is Mr Boo's mum, whose two- year-old Boo has Quadriplegic Cerebral Palsy and epilepsy. She blogs anonymously about their experiences.
Like Hannah she has fought hard to find and fund childcare appropriate for her son's needs. She works full-time but with flexible hours in education and lives in Kent.
"Boo has delayed speech and severe physical needs but he does not have learning difficulties. It feels as if he is a square peg in a round hole," says his mother about their battle to find the right childcare.
"There are no local special needs nurseries which can meet his physical needs. Most were designed for children with learning disabilities but that is not where he needs support. A mainstream setting is best for him, but he needs help to eat, play, sit and move around."
Boo now has one to one help in the private day nursery previously attended by his older sister, six. Local authority funding does not meet the full bill for his care and one to one support – a sum which his parents make up.
"We had a longstanding relationship with the nursery so we didn't have to start a complex set of negotiations which made it much easier for us. They were very keen to support Boo, so while it is extraordinarily expensive it is a fantastic place for him to be."
Despite this the funding is reviewed every 16 weeks. "I find it very upsetting. My son's Cerebral Palsy isn't going to go away but we have to keep re-applying. That is an awful lot of work for us and for the nursery staff and there is the constant worry that funding could be pulled at any time. In that case one of us would have to give up work. Then we would lose our home."
The pressure to maintain an income which will meet Boo's childcare bill is made even harder by the number of medical appointments each week. "Obviously we want to be there for those but that again has to be worked around. In fact it also means we pay for a lot of childcare Boo doesn't even use."
Boo's mother has been told many times that she should give up work to care for her son. A view which is, she says, ill thought out as well as hurtful. "Parents of disabled children have the right to work because they want or need to. I need that bit of me, but I also believe high quality childcare is helping my son.
"As a parent of a disabled child I have come to hate the word normal – but Boo does need that. Nursery allows him to play with friends, learn new things and develop his independence and confidence. It is really helpful for his development. For us as parents it also means a tiny bit of the enormous responsibility of caring for our child is shared."
"Our voices may be the minority but they must be heard, because inclusion for our children must become a reality not an ideal."
For more information about childcare for disabled children click here or call the Contact a Family helpline on 0808 808 3555.
You can find out more about the Parliamentary Inquiry here.