Category Archives: Practical Help

Have you been told that your child is too young to have a continence assessment?

Has your local continence team told you that your child isn’t old enough to have a continence assessment? Our new template letter could help you to make a complaint.

Our Legal Entitlements and Problem-Solving (LEaP) Project helps families who are struggling to get the support they need from health or social care services. We recently heard from a parent who had been told that her 4 year old son, who has autism and complex epilepsy, wouldn’t be able to get a continence assessment until he turned 5.  

We wrote a template letter to help the family make a complaint to the local health authority. We quoted some of the relevant guidance, which makes it clear that health authorities shouldn’t make children wait until they reach a certain age before they get a continence assessment.

We’ve uploaded the template letter so that other families who might find themselves in a similar situation can use it to make a complaint. We have separate versions of the letter for England and Wales.

Amelie gets transport to school, with help from our LEaP Project

Karen, who lives in Surrey, contacted our LEaP Project in January for help with a school transport problem. Her daughter, Amelie, is 11 years old and has Phelan McDermid syndrome. The local council had been providing transport for Amelie to go to a special school for children with severe and profound learning difficulties. When Karen told the council that they were moving to a new address, within 3 miles of the school, the council said that she needed to re-apply for transport.

Karen explained in her application that Amelie wasn’t able to walk to school because of her complex needs. But the council decided not to provide transport, because Karen had help from carers and access to a car, so she was expected to drive Amelie to school or accompany her on public transport.

We wrote a letter to help Karen appeal the council’s decision. The letter explained that the council had a legal duty to make transport arrangements for Amelie, who couldn’t be expected to walk to school or travel by public transport, even if Karen accompanied her, because of her disability. The letter also pointed out that parents can only be expected to accompany their child along a walking route, not by car.

At first, the council refused Karen’s appeal and insisted that she had ‘means and resources available’ to get Amelie to school. With our support, Karen contacted a manager at the council to demand a fuller response, which specifically addressed all the health and safety issues she had raised. A few days later, the council phoned Karen and agreed that Amelie was entitled to transport because of her special educational needs and disability.

Karen was very pleased with the council’s decision: “It was extremely stressful having to deal with the loss of transport at the same time as moving and to receive the default responses from the council, which really felt like we hadn’t been listened to. I was very lucky to be supported by our school, social worker and GP and the LEaP Project and I think with the combined effort we got the right result. I am so happy that Amelie will be able to get to school in a way that is best for her.”

Karen had to challenge the council twice before getting transport for Amelie, because the council didn’t consider her appeal information properly. We know from our experience on the LEaP Project that some councils have refused transport twice or three times before putting things right.

If you’re in a similar situation, you can read our Parent Guide on School Transport in England and use our updated school transport template letter to challenge a decision. We also have a parent guide and template letter for parents in Wales.

If you’re still unhappy after using the council’s appeals process, you also have the right to complain to the Local Government & Social Care Ombudsman or the Public Services Ombudsman for Wales.

Has your child been refused a continence assessment at home?

Has your local continence team told you that they can only assess your child at a school/hospital, rather than at home? Our new template letter could help you to make a complaint.

Our Legal Entitlements and Problem-Solving (LEaP) Project helps families who are struggling to get the support they need from health or social care services. A parent recently contacted the Project for advice about her son’s continence assessment. She had been told that the assessment had to take place at her son’s school and that home assessments weren’t possible. She was also told that the supply of nappies would stop if they weren’t able to attend the assessment at the school. The family wanted the continence team to be more flexible and consider giving them the option of an assessment at home, because of their son’s complex medical needs.

We wrote a template letter to help the family make a complaint to the local health authority. Our letter explains that public bodies must act reasonably and where they have the power to do something, they must be prepared to act flexibly, instead of adopting rigid policies.

We wanted to share this template letter with other families who might find themselves in a similar situation. We have separate versions for England and Wales.

The twelve days of Christmas with our Innovation Centre

Christmas is a time for joy and for making dreams come true. At our Innovation Centre we believe that all children can achieve their dreams, however big or small. This Christmas we are celebrating twelve fabulous ways our Innovation Centre have made dreams come true this year:

  • A Tandem Surfboard which is helping children across the world experience the thrill of the waves

We want to help even more children to achieve their dreams, however big or small. So if we can help your family please get in touch with us and let’s make 2019 a year to remember.

Is your child getting unsuitable continence products?

Have you been told that your child can’t have the type of continence product that she needs? Are you concerned about the quality of the products you use? Read on to find out what you can do to make sure your child gets suitable products.

Our Legal Entitlements and Problem-Solving (LEaP) Project helps families who are struggling to get the support they need from health or social care services. We helped Louise get continence products for her daughter, Rhiannon and asked the Welsh Government to make sure that its guidance did not set a daily ‘maximum’ on the number of products available to families.

We also know from our work with families that the type and/or quality of products can cause problems too. We recently heard from a parent who wanted ‘pull-ups’ for her daughter instead of nappies. She was told that her local health authority didn’t supply them and she contacted the LEaP Project for help.

We wrote a template letter to help the parent make a complaint to her local health authority. Our letter quotes from the relevant guidance, which makes it clear that children should be assessed and provided with products which meet their individual needs. We wanted to share this template letter with other families who might find themselves in a similar situation.

So, if you’ve been told that your child can’t have the products s/he needs, you can use our template letter to make a complaint. We have separate versions for England and Wales.

That dog has got a beard!

We’ve got a great new children’s book in our library that explores the consequences of being different. ‘That dog has got a beard!’ is all about Buster who feels sad and worried because every time he goes out for a walk people stop and stare at him. He doesn’t know why this is happening but with a little help from his family, he begins to realise that being different isn’t such a bad thing after all.

Author Natalie Ann Beattie told us a little bit about herself and the reasons why she wrote the story:

“First and foremost, I am a mother of two young children, Ethan and Isobelle. Ethan is 13 years old and Isobelle is 6. My son Ethan has Autism and ADHD, which are both very challenging and complex conditions. Before becoming a full-time mum and carer for Ethan, I was a Primary teacher for almost 10 years. I taught children from the age of 3 up to 11.

When my son was a little over 18 months things began to change, he stopped speaking and eating, and his behaviour became challenging and repetitive. I left my teaching to focus on his care, and at the tender age of 4 he was diagnosed with ASD and, two years later, ADHD. I have spent the last 10 years plus gathering all the appropriate help and support required to manage his condition and thus enable him to develop socially, as well as mentally and physically. As you can imagine, it has been an incredibly difficult and challenging journey for all of us. However, the time has come to use all those years of experience in a positive and fulfilling way.

“That dog has got a beard!” is essentially a story about a dog who, because of the way he looks attracts a lot of unwanted attention from other people. When the owners of the other dogs start talking about Buster’s beard and laugh at him, he becomes sad and worried and struggles to work out why he is different to everyone else. Fortunately, with the help and love of his family he learns to embrace his difference and become a happy dog once again.

The story is loosely based on some of the negative responses we have received as a family when we have gone out together with Ethan and something has triggered a ‘meltdown’. The frequent stares, snide remarks and hurtful comments have been devastating and a cruel reminder of the need for people to accept and become more aware of children and adults with autism. We have learned to embrace our son’s condition and to see him as a very special and wonderfully unique young person. I felt that now was the time for the rest of society to appreciate his autism and learn to celebrate, not mock, other people’s differences, whether they be physical, mental or behavioural. In essence, for society to accept him, not the other way around.

The second reason for my story is a simple one. Every time we go out for a walk with our Labradoodle, Buster, people stop and make a comment about his beard. The phrase ‘that dog has got a beard’ was one that I heard so many times that it sparked off the idea for the book. How often do you see a dog with a beard? Especially one that is 7 inches long! Buster is a wonderful dog and has an amazing temperament. He is loved wherever he goes and we are regularly invited to schools, mother and toddler groups, sports clubs and residential homes to do book readings. Buster is a hit with all ages.

Thank you Cerebra for including my book in your library.”

You can borrow ‘That dog has a beard!’ free of charge from our postal lending library.
You can also find out more on Natalie’s website and follow Buster’s adventures on his very own Facebook page .