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Disability childcare - your stories

Parents of children with learning disabilities are being left to struggle alone without support during the summer holidays, according to Mencap.

After we reported on the charity's findings, including that access to childcare was "insufficient" and "inflexible" in many council areas, lots of readers got in touch to share their stories.

Here are some of your experiences.


'Summer is such an expensive time'

Image copyright Matt Sears

Matt Sears from Worcestershire emailed to say his family relies on a local charity to help with holiday care for his 14-year-old son Luke, who has learning difficulties.

"The summer holidays are an expensive time for us. Here it costs £20 a day for him to attend a weekday holiday play scheme which is run by a brilliant charity based in Malvern. Some days are discounted by the local council but not all, and only then if you receive direct payments for help from a carer. We get eight hours a month.

"I too gave up work to look after my son full time. Caring for him was my priority and it was good to read that I'm not the only one."


'A draining fight'

Image copyright Samantha Martin

Samantha Martin from Staffordshire says her family has been "through hell and back" trying to get help for her five-year-old son Harley who has learning disabilities.

"We live in a much better world with regards to understanding and accepting disabilities yet the services provided are still very much in the dark ages.

"Very little is available with regards to support and families have to fight over and over again to get the support they are entitled to. Nobody seems to want to take responsibility.

"Social services deal with such severe cases of abuse and neglect and these cases are, rightly so, high on the agenda. However, families in severe need through no fault of their own are left to deal with it while desperately trying to keep their heads above water and get through each day with no respite support at all.

"I have found the voluntary services to be far better but unfortunately they are very limited."


'Progressively more stressful'

Caroline from London has an 18-year-old son with severe autism.

"Ever since I returned to work, when he was five, the type of work and hours I have been able to do has been totally governed by my ability to find after-school and holiday care for him. This has got progressively more stressful and difficult as he has got older.

"After-school care has been impossible since he was 13 when our then local authority stopped the 'Count Me In' funding for inclusive access to after-school activities.

"Now he is 18 I am desperately trying to keep him in full-time education as long as possible so I can continue to do the job that I do and have him living at home with me and his sister.

"This will probably stop next summer when he will come under social care. Supported living has been mentioned but we have a long way to go before he is ready for this."


'Major breakthrough'

Natasha from Hertfordshire says her son also has autism but there is no specialised childcare provision locally that is suitable for him.

"I decided to have a look at the local kids clubs for mainstream children and see if they could accommodate me accompanying my son to their sessions. I had a mixed response - some did not allow this, others would for a limited time but one did allow me and it has been fantastic.

"My son was very uncertain and anxious at first but having me with him gave him the confidence to try new things in a new environment and on Monday he went for his first session unaccompanied by me.

"This is a major breakthrough for him and I am truly grateful to the kids cub provider who allowed this flexible approach. I hope now to be able to use this facility for future school holidays and am so grateful."


'Overwhelming'

Caitriona McDermott from Selsey, West Sussex, says it is impossible for her to work and care for her 16-year-old daughter, who is physically and mentally disabled.

"She requires 24-hour care. She has had seven weeks holiday from her school this summer but we have had just five days respite in a local play scheme. The thoughts of our future with ongoing cost-cutting is overwhelming."

Meanwhile Alicia McColl from Surrey says childcare for her autistic son will cost £2,200 in August.

"I'm a single parent and this cripples me every year. Childcare costs come before all my bills, except rent, and then I spend months catching up."

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