Out of parents who said they find it hard to access services, nearly 50 per cent highlighted issues with using childcare, and over half said they had problems with short breaks or respite services.
As we reach the end of the school summer holidays, Mencap is calling on local authorities, as well as national and the UK Government for improvements to childcare and shortbreak provision for disabled children and their families.
Nigel Lambton, father of Harriet, 15, who has severe autism and a learning disability, said:
‘‘As a working parent, the summer holidays are often one of the toughest times of year for us as a family. We have always found it incredibly difficult to find suitable childcare for my daughter, who is now 15, when she is not at school. My wife had to leave her career in medicine to care for Harriet, and is now working as a teaching assistant, which gives her the flexibility to be there for Harriet during the holidays. In term time, my wife works three days a week and uses the other days to organise the family and all the admin that come with Harriet’s Direct Payments that pay for her support. In the holidays she is usually with Harriet 24/7 leaving her no time for anything else.
We have a great ‘link family’ where Harriet goes for short breaks but understandably their schedule changes over the summer. Harriet needs 2:1 support when she goes out and she has a condition called Ehlers-Danlos syndrome that affects her connective tissue and causes Harriet gastrointestinal problems so she has to have medical intervention every day. Because of the time and cost it takes to build up this specialist support, it largely falls to us during the holidays with my wife caring for Harriet during that period 24/7 leaving her no time for anything else.’
Jan Tregelles, CEO of Mencap said:
‘The summer holidays can be a challenging time for all parents. But finding suitable childcare can be extremely stressful for parents of children with a learning disability, a problem that is even more pronounced in the summer holidays. Whilst local authorities have a responsibility to offer sufficient childcare for all children, provision for disabled children is often lacking. This is something that urgently needs to be addressed both locally and nationally.’
‘For families caring 24 hours 7 days a week for a disabled child over the holiday period, it is unacceptable that they are struggling to get the respite they need through short breaks.’
Notes to editors
Survey questions and percentage of responses
Do you find it hard to access services and support during summertime for your son(s) or daughter(s) with a learning disability?
Total responses: 316
- Yes: 80.1%
- No: 19.9%
What services relating to your son(s) or daughter(s) learning disability do you find it hard to use during summertime?
Total responses who answered Yes to above question: 248
- Childcare: 48.8%
- Short breaks/respite services: 56.0%
- Portage: 7.7%
- Other: 20.2%
There are 1.5 million people with a learning disability in the UK. Mencap works to support people with a learning disability, their families and carers by fighting to change laws, improve services and access to education, employment and leisure facilities.
Mencap supports thousands of people with a learning disability to live their lives the way they want.
For advice and information about learning disability and Mencap services in your area, contact Mencap Direct on 0808 808 1111 (9am-5pm, Monday-Friday) or email firstname.lastname@example.org.
About learning disability
A learning disability is a reduced intellectual ability, which can cause problems with everyday tasks – for example shopping and cooking, or travelling to new places – which affects someone for their whole life.
People with a learning disability can take longer to learn new things and may need support to develop new skills, understand difficult information and engage with other people. The level of support someone needs is different with every individual. For example, someone with a severe learning disability might need much more support with daily tasks than someone with a mild learning disability.
Learning disability is not a mental illness or a learning difficulty, like dyslexia. Very often the term ‘learning difficulty’ is wrongly used interchangeably with ‘learning disability’.