I was diagnosed with Epilepsy aged 12 having suffer regular seizures both Grand Mal/ Tonic Clonic and abscent seizures. I was medicated with the medication Epilim (Sodium Valproate)
The advice given to me by my Neurologist, was always to take my medication as this would help control my seizures, so trusting the experts always done so. When I first got pregnant with my daughter, my husband and I decided to have my ante-natel care at my local hospital as that was also where my Neurologist was based. Throughout all my pregnancies my medical team were aware I was on Epilim, and the advice my husband and I was given, was to carry on taking my medication and to increase my dosage of Folic Acid.
One day I saw on the news a lady talking about the dangers of Epilim in Pregnancy, how whilst pregnant it could affect the baby, which could result in the baby having a condition called FACS (Fetal Anti Convulsant Syndrome) I was speechless watching this. I knew there and then, the children had this condition. It was as if a light had been switched on, everything the lady was saying was exactly what I had been saying for years. I rang the news immediately and was put in touch with Janet Williams. To cut a very long story short after months of tests, Drs appointments my children were diagnosed with FACS SYNDROME – the medicine I was prescribed HAD affected my babies. As well as the diagnosis of FACS, my children also went onto obtain diagnosis of ;
• Facial Dysmorphic Features
• Cerebral Palsy
• Valgus Foot
• Speech & Language Delay
• Autisic behaviour/Dyspraxia
• Noise Intolerance
• Deafness and more
In November 2013, along with Janet Williams I Co-Founded FACSA – a parent/family support group for families affected by Epilim and other Anti Convulsant medicines. At the same time we also started campaigning in Government and have since been named as Government Campaign Group for Epilim (IN-FACT)
Having worked with parents and carers of children and young people with Special Educational Needs and Disabilities (SEND) since 2003, I have extensive and in-depth knowledge of how the SEND system works and how services operate. With an excellent reputation of being a hands-on, local advocate of Children’s and Carers Rights I have a track record of going the extra mile to get the best results for families.
For 10 years I was involved with a Parent Carer Forum, developing the organisation and supporting a management committee of parents and carers to make it a success. I managed many projects and enjoyed watching our families and the organisation grow up!
I then developed the Yorkshire and Humberside Family Support Service for the national, award-winning charity Caudwell Children. I helped families in crisis to get the support they deserve through services, community groups and my team of hand-picked Volunteer Supporters who were from a wide range of backgrounds.
I then went on to be an Independent Supporter, helping families to understand the changes in the statementing process and providing hands-on support to get the best possible Education, Health and Care (EHC) plan for their child. Having been involved with the pilot for this new system I was keen to help families from the outset.
I am also involved with several other organisations which are dedicated to supporting and informing families of disabled children and young people – Bringing Us Together, Visits Unlimited and Justice Together – a new project from Bringing us Together that seeks to make information and support available to families whose children and young people have been detained or are at risk of being detained against their wishes.
I am part of national network of parent activists and professionals and if I don’t know the answer to something, or the right way to help someone, I can usually find someone who does.
This guide is for anyone, parent or professional, who is considering making a claim for Disability Living Allowance (DLA), on behalf of a child under 16 years of age who has a neurological or neurodevelopmental condition. This includes conditions like autistic spectrum conditions, ADHD, cerebral palsy, Down’s syndrome, epilepsy, learning difficulties, global developmental delay and acquired brain injuries among others.
Covering such a wide range of conditions means that, inevitably not everything in the guide will be applicable to all children. The intention is that you can use whatever is most appropriate and expand on it with your own examples.
Disabled children: a legal handbook is an authoritative yet accessible guide to the legal rights of disabled children and their families in England and Wales. The authors expertly navigate the many, often overlapping, sources of law, explaining the difference between what public bodies must do to support disabled children and that which they may do.
The handbook aims to empower disabled children and their families through a greater understanding of their rights and entitlements. It is essential reading for the families of disabled children, their advocates and lawyers, voluntary and statutory sector advisers, commissioners, managers and lawyers working for public authorities, education, social and health care professionals, students and academics.
Each chapter has been adapted into a PDF for you to download for free.
Click here to view download links for each chapter (opens in new window)
I have worked alongside young people since starting out as a worker at Kettlewell Youth Hostel in the Yorkshire Dales when I was 16, supporting children and young people funded by a Gingerbread group in Bradford, taking them climbing and down caves and generally having a good time!
Work and life has been very varied since I finished college….working on an organic smallholding, painting pictures, taking NVQ’s in IT and business and then getting my first job supporting disabled people at an institution ….I lasted a year and supported all three of my ‘key clients to move out’ and not making myself incredibly popular with the management. Since then I’ve followed my passion to make a difference, working in local authority services, in a Health Action Zone project on transition and then with the Foundation for People with Learning Disabilities, Paradigm where I first starting supporting young people to take up individual budgets (the DYNAMITE project) and since 2006 I’ve worked with In Control to develop personal budgets and person centred support for children and young people……and this work goes on.
My offer of support or the expertise I might be able to offer is around all things personal budgets and children and young people including legislation, practice guidelines, myths and myth busting, working alongside schools, colleges, social care services and health services. And if I can’t help I’ll probably know someone who can ….fingers crossed I can help J
Zoe Thompson shares details with Justice Together of how they used RAS and statutory guidance to get Direct Payments for access to leisure opportunities
We applied for a Child in Need assessment for P (16 year old male) under Section 17 of the Children Act. P’s needs were assessed using the RAS form (Resource Allocation System). Here is a link to a blank copy of a RAS form.
It is very long but has been useful, not just for direct payments but also as part of the evidence that was submitted to transfer P from DLA to PIP, where his funding was actually increased.
We have also found the RAS form useful for providing evidence for P’s EHC Plan. So the form is long but it was worth doing in our case.
The most important bit of the RAS form is probably the bit where it tells you how many points equate to what indicative budget. This is how our local authority calculate it:
Read the full story on the Justice Together website (opens in new window)
A couple of weeks ago, the website called The Mighty,published a since-removed post called meltdown bingo. The post was a pejorative “game” aimed to make light of children and adults experiencing sensory and emotional overload resulting in a meltdown. As some of my acquaintances pointed out, having a meltdown is not enjoyable for the person having the meltdown. As a parent who has watched children go through meltdowns, it is also no fun for the family around a person having a meltdown. Heck, I’ve had meltdowns myself, and they are no fun for me either (although I have more ability to temper my behavior than my kids do).
Since that time, the disability community has issued a sharp rebuke to The Mighty, with#CrippingtheMighty. The Mighty is run by non-disabled people, is rich in inspiration porn, and contains an inordinate amount of material submitted by people who purport to speak for us. Nothing about us without us is clearly not a principle held by The Mighty. A number of blogs and posts have surfaced from disabled people issuing a rebuke to parents of disabled children for speaking for their children. A number of blogs and posts have surfaced from parents claiming they must speak for their children. Missing from these posts is the perspective of disabled parents who have disabled children.
Autism can normally be diagnosed in children at around the age of two.
If you think your child may have autism, ask your GP to refer them to a consultant or diagnostic team with a good understanding of the condition.
The National Autistic Society (NAS) is the leading UK charity for people with autism. It offers advice and support for those with their condition, and their loved ones.
READ FULL ARTICLE ON AUTISM ON THE NHS WEBSITE (LINK OPENS IN A NEW WINDOW)
Human rights are a powerful tool in making life better for children because they set out an entitlement under law to the basic things children need to have a good start in life - like safe and secure housing, a decent education, to be protected from harm and to play and develop. But rights are only valuable if you can challenge decisions or actions which breach your rights. Sometimes called “access to justice”, this right of challenge underpins all these others rights to housing, education and to be safe. Without access to justice, the other “rights” are just a commitment on paper. Read full article on the CRAE website (opens in a new window).
Julie is one of the founding members and chief executive of In Control. In Control is a national charity working for an inclusive society where everyone has the support they need to live a good life and make a valued contribution.
Julie has over 25years experience in the health and social care sectors. Julie studied at Huddersfield university business, management and leadership with a strong particular focus on managing change. She was able to put theory into practice, managing considerable change in social and health care commissioning and provider arrangements, covering a variety of disability and health sectors and organisations.
Julie is rooted in her passion for inclusion and enabling people to have the support they need to lead an ordinary life.
In 2003 she was the co founder of the national charity “In Control Partnerships” which instigated self directed support and the personalisation agenda in health and social care policy and practice. This enabled people with disabilities and their families to be more in control of their health and social care provision.
I can provide on line advice either as an individual or signpost you to others or services through In Control.