MPs recently described the struggle, many families with disabled children go through to get childcare, as “shocking”.
A cross-party group of MPs and peers held an independent Parliamentary inquiry into childcare for disabled children and found parents can face huge problems over affordability, quality and access.
its report 'The Parliamentary Inquiry into Childcare for Disabled Children: Levelling the Playing Field for Parents with Disabled Children' found parents with disabled children are often charged higher fees and many parents are forced to give up work as it is not viable with such high childcare costs.
Many nurseries profess to be inclusive but when parents investigate further, they find there is a lack of trained staff and equipment and resources, that make them inappropriate for children with additional needs.
Ellis who has albinism
However there are some mainstream nurseries that do their utmost when a parent with a disabled child turns up asking for childcare.
One such nursery is Cylch Meithrin in Holyhead, Anglesey, which recently cared for a boy with albinism, who is also severely visually impaired.
The Welsh medium pre-school was advised by Llinos Vaughan Roberts from the specialist teacher service for the visually impaired.
Sue Smith, leader of the Cylch, revealed that because Ellis was visually impaired they did their best not to change things around too much and if they did, they always made sure he was aware of the new layout.
His name tag was a different colour to the other children’s so he could easily distinguish which one was his and because he doesn’t like noise as it can confuse him, when the nursery became too noisy, his one-to-one helper would take him to the book corner where it was quieter.
His albinism means he has to have 50 plus factor sunscreen on at all times and if the sun was streaming through the windows of the pre-school, the staff shut the curtains to make it darker for him.
May who has hypoxic ischemic encephalopathy (HIE)
Another nursery which goes all the way when it comes to inclusion is Dulwich Day Nursery, part of the Asquith Day Nurseries chain in West Dulwich, London.
Stacie Lewis contacted over 50 childminders and nurseries before she found Dulwich Day Nursery which agreed to take her daughter May, who has severe brain damage.
May was born with hypoxic ischemic encephalopathy (HIE), caused by a lack of oxygen to the brain.
This means she has cerebral palsy and epilepsy, she cannot sit up without support and she has limited vision.
Finding childcare proved to be extremely tough for Ms Lewis, who was turned down by nurseries telling her, May would go on a waiting list and then finding out later they didn’t even have a waiting list. While others told her taking May, would be unfair on the other children in the nursery.
All of the staff have first aid training anyway and when May started they all did SEN training and learned how to cope with seizures which May regularly has. During these seizures, May doesn’t lose consciousness and her worker found the best response was to hold her close and sing to her.
The staff were also trained by May’s physiotherapist to do certain exercises and stretches with her during the day.
Andy Morris, chief executive of Asquith Day Nurseries, said taking May “was the best decision I have ever made”.
He believes having children with disabilities can be beneficial for everyone. “It helps the parents, adds real value to the nurseries and it is good for the other children and for the staff. The children see that everyone in the world is unique and if children see other people with disabilities from an early age, they will accept them and not see them as having a disability,” he says.
"May’s mother came up to me while I was at the nursery one day and thanked me for saying we would take May and I thought ‘wow, I have really made a big difference’. It made me feel very emotional.
"I was there one day when May became distressed, began hyperventilating and started to fit. The staff immediately started singing, as did the children, and she calmed down. It was incredible to watch. When I talk to staff who have been caring for a child with special needs they say it is the most rewarding thing they have done.
“When we do this, it only enhances the company. It does cost extra money, and we have to train up staff, but it is definitely worth it,” he says.
Finn who has haemophilia
Benger Bears pre-school in Sutton Benger, Wiltshire, made a similar bold decision by taking a boy called Finn, who has haemophilia.
The staff there admit they were initially daunted when they realised haemophilia can be a life-threatening condition, if it isn’t managed correctly.
The blood disorder means his blood does not clot normally, which can cause bruising, bleeding into muscles and joints, prolonged bleeding and serious internal bleeding.
Internal bleeding can be life threatening, while repeated bleeding in the joints can lead to arthritis or long-term joint damage. Haemorrhages into the brain are particularly difficult to manage and can be fatal.
Finn has a severe form of Haemophilia A and so every morning he is injected with a genetically engineered clotting factor into a central line in a port - a device which has been surgically inserted under his skin on his chest. The port is covered in a dressing to protect it from infection and he can’t get it wet as it could lead to a serious infection.
The nursery ordered in foam finger guards for the doors in the setting and it also purchased a small freezer to store ice packs to put on any bruising that may occur if he had a fall. If he played outside on the bikes and trikes, staff would put knee and shin pads on Finn.
His parents worked closely with the pre-school and managed to secure 15 hours of inclusion funding from the local authority for one-to-one supervision at Benger Bears.
Inclusive nurseries can benefit everyone
By being inclusive, nurseries such as these, are changing people’s attitudes to disability.
Jean Lee, head teacher of Charnwood Nursery in Stockport, has found the inclusive attitude of the nursery has had a big impact on the parents. “There is a ‘can do’ attitude in terms of involving all children, for example, in birthday parties and parents often ask for advice for any changes or adaptations they may need to make to their plans to ensure the inclusion of the friends of their children who have different needs,” she says.
The report from the Parliamentary Inquiry found 41 per cent of families with disabled children aged three and four are unable to access the full 15 hours free entitlement to childcare and early years education due to a chronic lack of appropriate settings or lack of funding.
MP Pat Glass and co-chair of the Parliamentary Inquiry, would like to see Ofsted requiring nurseries to demonstrate what reasonable adjustments they have made for disabled children in order to receive a grade of Outstanding.
Training is key and the report from the Inquiry recommended that the new Early Years Educator qualification “must include special educational needs and disability training and, where practical, placement experience in a setting caring for children with additional needs”.
Although childcare problems are bad in the early years, the problem exacerbates as children get older, with costs rising and availability becoming even more limited.
Yet nurseries and schools can do so much to help both parents and their disabled children, who have enough of a struggle in life as it is.
As mother Tracey Jones says: “Nurseries and schools need to listen to the parent and see the child as a child and not as a condition. Disabled children are not as scary as they first seem.”