Links, Benefits & Entitlements
These usual links below are companies and charities who have given us hope and helped us cope with Mya's condition and give us valuable information regarding Dravet's/S.M.E.I, epilespy, ketogenic diet and everything else associated to special needs children. There are also links to "Happy Days Charity" which provided us with a fabulous holiday to Gt. Yarmouth, which we thoroughly enjoyed and the charity "When You Wish Upon a Star" which is founded by one of our special friends Barbara who organised a huge limosine to pick us up in style and meet with Peter Andre and Katie Price. I have also put details about different kinds of benefits and entitlements available for disabled children.
There are over 500,000 of young people with special needs in the UK, many of them with severe mental and physical disabilities and life-limiting illnesses. The financial strain on their families can be enormous and for some a simple trip to the seaside or a week's holiday is beyond their means. We fund and organise holidays, days out and theatre trips throughout the UK for disadvantaged young people with special needs. We help young people in special needs schools, in hospitals and in hospices and we help individual families. Since we were established in 1992, we have brought a little happiness into the lives of more than 60,000 young people, but there are many more waiting for our help. Will you help us to help them?
The International Dravet Syndrome Epilepsy Action League, a volunteer-based nonprofit organization, was founded by parents of children with Dravet Syndrome to promote research and education for the early diagnosis, appropriate treatment, and cure of Dravet Syndrome, also known as SMEI (Severe Myoclonic Epilepsy of Infancy), and related genetic, febrile, sodium channel epilepsies
Our aim is to grant the 'Wishes' of children suffering from a life threatening illness, from the age of 2 to 16. Our gallery page shows a few of the 'Wishes' we have fulfilled for our very special children, and brought a smile to what can sometimes be a very traumatic time, not only for the child concerned but also for the families.
The International Dravet Syndrome Epilepsy Action League, a volunteer-based nonprofit organization, was founded by parents of children with Dravet Syndrome to promote research and education for the early diagnosis, appropriate treatment, and cure of Dravet Syndrome, also known as SMEI (Severe Myoclonic Epilepsy of Infancy), and related genetic, febrile, sodium channel epilepsies
Great Ormond Street Hospital's Home Page where you will find a lot of helpful information
Epilepsy Action is the largest member-led epilepsy organisation in Britain, acting as the voice for the UK's estimated 456,000 people with epilepsy, as well as their friends, families, carers, health professionals and the many other people on whose lives the condition has an impact.
As well as campaigning to improve epilepsy services and raise awareness of the condition, we offer assistance to people in a number of ways including a national network of branches, accredited volunteers, regular regional conferences and freephone and email helplines.
Parents of disabled children can feel very alone and bewildered by all the services and information out there. Cerebra's Parent Support Department aim to help by offering information, support and various services that parents have told us would help them.
Examples of ways the charity helps are:
Enquiry service
Quarterly newsletter
Sleep problem solving
Holiday house
Postal lending library of books and sensory equipment
F.A.B.L.E IS ………
Raising public awareness of Epilepsy through education and publicity.
Offering help, support, assistance and advice thorough our National Patient Support Network
Raising awareness of Vagus Nerve Stimulation Therapy, a treatment for those with Epilepsy uncontrolled by medication alone.
A one stop Epilepsy Information Drop in Centre stocking leaflets on Alarms, Education, First Aid, Residential Homes and much more.
The NSE, the largest medical charity for epilepsy in the UK, provides information and support to people affected by epilepsy and professionals. Through our medical, residential and rehabilitation services, we also provide care for people with epilepsy.
The Joint Epilepsy Council of the U.K. and Ireland (JEC) is an umbrella organisation which exists to represent the united voice of the voluntary sector and presents evidence based views on the need to improve services for people with epilepsy, their families, and carers in the UK and Ireland.
Our keys aims include:
To promote improved standards of, and access to, integrated services for health, education and social care for people with epilepsy and their carers.
To increase epilepsy awareness amongst politicians, civil servants, service providers and the general public.
The JEC provides a way for 22 epilepsy organistions, operating in England, Wales, Scotland, Northern Ireland and the Republic of Ireland, to work collaboratively in a focussed, professional and effective manner, facilitating the sharing of information, expertise and skills, promoting good practice, maximising resourses and identifying unmet needs. We work to unite the efforts of member organisations to reduce stigma, challenge discrimination and disadvantage and improve the quality of life for people with epilepsy.
Epilepsy Research UK is the only national charity solely dedicated to epilepsy research. We aim to substantially increase the funding available for research into the causes, treatment and prevention of this debilitating condition, which affects adults and children
Contact a Family is the only UK-wide charity providing advice, information and support to the parents of all disabled children - no matter what their disability or health condition. We also enable parents to get in contact with other families, both on a local and national basis. Each year we reach at least 275,000 families
The Muir Maxwell Trust, a paediatric epilepsy charity, aims to make a difference by providing children and their carers with practical support and by speeding up what can be a frustratingly slow diagnostic process.
Though not a dedicated Helpline, we’re always on hand to give help and advice to those facing the challenges of caring for children with severe epilepsy.
This is a site where it explains everthing you need to know about the ketogenic diet. The ketogenic diet is not new – it has been used for the treatment of epilepsy for over 80 years. With the introduction of anti-convulsant medication in the 1930’s the diet has taken a ‘back seat’ and tends to be only used nowadays as a ‘last resort’ if it is used at all.
To publicise the Ketogenic diet and make it more of a FIRST LINE treatment for childhood epilepsy instead of a last resort. If the first two drugs tried do not stop a childs seizures then the ketogenic diet should be offered as a course of treatment.
To give parents an informed choice about the Ketogenic Diet from people who have actually done it with their own children.
To support parents in trying to get this treatment for their children
To support parents/carers and the children once on the diet.
To source and provide the latest information possible on the Ketogenic Diet – who’s doing what, where etc.
To provide funding where possible, to help with education/training in the administration of the Ketogenic diet to make it more widely available including continuing to work with KetoPAG (Ketogenic Professional Advisory Group in the UK)
To provide funding where possible, to help enrol children on the Ketogenic Diet programme with a KetoPAG team throughout the UK.
To establish ‘MF Regional Co-ordinators’ to work with and support families using the diet in their own homes and in their own local areas.
To eventually have centres of excellence practising the Ketogenic diet in every area of the country.
A site set up for Alex a little boy with Dravet's
A site set up for Daisy, a little girl with Dravet's
A site set up for Sydney, a little girl with Dravet's
Benefits & Entitlements
As with a lot of things, we found out about benefits that we were entitled to much later than we needed to. I remember a conversation with someone in authority who said “I am not supposed to be telling you this but have you applied for Disability Living Allowance?” as though she were committing a crime in helping me! As for Carers Allowance, we found out about 2 years after we could have been claiming it. Benefits are there for a reason so if you are entitled to them then claim them – every little helps.
A word of warning though. These forms are very tedious and you do find that you end up writing the same thing over and over again. Also, it can be quite upsetting putting into black and white the problems that your child has – it seems much more real somehow. Do ask for help if you need it and if it gets too much, put it down, have a cup of tea and do it again another day when you are feeling stronger. Good Luck!
List of Benefits
Disability Living Allowance
Disability living allowance is paid when your child needs more care and attention than their mainstream peers.
Carers Allowance
If your child receives the middle or higher rate of the disability living allowance and you care for them for more than 35 hours a week then carers allowance may be available.
Blue Badge Scheme
This scheme provides parking concessions primarily for people with walking difficulties who are travelling either as passengers or drivers. If you are applying for your child then you may only use it when they are in the car with you.
Child Tax Credits Disabled Child Element
Child tax credits are payable to any family with children but are dependent on level of income. The disabled child element increases the potential benefit for any family with at least one disabled child.
Direct Payments
Direct Payments are a benefit where Social Services provide financial aid towards employing your own helpers.
Home Care
Home Care is provided by the Community Support Service and gives help and support within the home. You may be entitled if you have a need for extra help around the home.
Warm Front
Warm Front is a grant scheme that provides a package of heating and insulation home improvements for people on certain benefits.
Disabled Person's Railcard
The Disabled Persons Railcard provides discounted rail fares for disabled travellers and carers.
Useful contacts
Benefits Enquiry Line - 0800 882200 (Minicom 0800 243355) Open 8:30 – 6:30 Mon to Fri and 9:00 – 1:00 Sat
Citizens Advice Bureau – www.adviceguide.org
Directgov – www.direct.gov.uk
Disability Living Allowance Helpline – 08457 123 456 (text phone 08457 22 44 33) Open 7:30 – 6:30 Mon to Fri
Disability Alliance UK - www.disabilityalliance.org - excellent site for information on disability benefits
