On top of any normal welfare benefits, you are eligible to apply for Disability Living Allowance (which is paid for the child), and is divided into Care components and Mobility components (or Motability if you prefer to have a car rather than the money for mobility), and you can apply for Carers Allowance (which is around £50/wk and is paid to any carer who looks after a child more than 35 hours a week and earns less than approx £100 a week through other taxable payments).
Call 0845 7123456 and ask for both forms if required. Carers Allowance is easy to apply for but the DLA forms are an absolute nightmare to fill in and seem designed to put you off completing them by making them so complex and repetitive.
For under 5s, you need to fill them in each year. You can apply for the care component from birth. From age 3, you can apply for the higher rate of mobility (which you can then choose to swap for Motability - a mobility allowance which you can use to buy a car of they get high rate mobility awarded).
When the child approaches 5, you have to re-fill in your Disability Living Allowance form and you can then apply for the lower rate of mobility if you were not awarded the higher rate of mobility. But once they grant you an allowance you agree with, this should then remain unchanged for the next 5 or 6 years.
There are a number of possibilities for getting help filling in these dreadful forms.Try:
Markfield, Markfield Rd, N15. Tel: 020 8800 4134. They hold one to one 2 hour sessions at the Markfield Project and at CDC, St Ann's Hospital to help parents with these forms. By appointment only - be warned - it takes up to weeks to get an appointment so book you appointment even if your DLA form has not yet arrived.
Haringey Carers Centre, Winkfield Resource Centre, Winkfield Rd, London N22. Contact 020 8489 8981 to book a special appointment for benefits advice, held every second Wednesday of the month.
Citizens Advice Bureaus can help when resourcdes allow.
Specialist Health Visitor at the CDC, St Ann's Hospital Sue Davies may be able to give support or advice.
Your social worker/HINTS worker/Family Link worker/family support worker at a children's centre
Your GP/health visitor
Essentially both Disability Living Allowance and Mobility Allowance are paid at different rates depending upon the severity of the child. Do NOT understate the problems your child is faced with and can face you with, and particularly be very clear about night time problems - incontinence, difficulty going to sleep, many wakenings, tantrums, fits, lack of sleep needed by child etc etc. Higher benefit rates for Disability Living Allowance is only paid for those with night-time problems, so if your nights are disturbed regularly, spell it out very clearly. The NAS and Cerebra have extensive factsheets on their websites suggesting how to fill in these forms - www.autism.org.uk <http://www.autism.org.uk/> and www.cerebra.org.uk. We strongly suggest you read through thee factsheets before attempting to fill in the forms. <http://www.cerebra.org.uk/>
Documenting in detail your child's every daytime and night-time problem, and every issue you face getting your child about outside the home is a fairly depressing task. Do not get fobbed off by the unhelpful people at the DLA who regularly tell callers with ASD children that they do not qualify for mobility payments if their children can walk - this is NOT true. You can apply under the 'refusal to walk' and severe mental impairment criteria for higher rate mobility. If getting about outside is made difficult by behaviour problems, communication and understanding problems, fears and phobias, rigid insistence on sticking to certain routes etc, dyspraxia etc, then you have a mobility problem. Make sure you photocopy the forms before sending them off, so that you are clear about what you wrote. If they do not award you the level you expect, you can then challenge them, and also it will help you fill the forms in the following year - much of it will be the same. Do not be afraid to challenge them - they will warn you that you may be offered less if you challenge to put you off - this is extremely unlikely and in our experience, many if not most challenges, backed up by a letter from a GP or a professional who knows your child are successful.
(note from Julia - we are finding that generally most families with a child with autism who has night time sleep problems are getting high rate care and low rate mobility at present. If as your child gets older you have huge difficulties getting about with them, don't be scared to go back and contest the mobility part - you may want to get professionals to back you up on the difficulties involved).
Tax credits - Child Tax credits, Working Tax credit and Childcare Tax credits are available for those working but earning less than £16,000 per year per household. There is extra allowance made also in the Child Tax Credit for a disabled child, and more for a severely disabled child. WHEN YOU GET YOUR DLA, TELL THE TAX CREDITS PEOPLE - YOU WILL THEN GET £200 TO £300 A MONTH MORE FROM TAX CREDITS IN ADDITION TO THE DLA!!Lots of people forget to do this step and miss out.Tax credit helpline is 0845 3003900. If you are working less than 16 hours a week, you can still qualify for Child Tax Credits, but not Working Tax Credits.
Benefits Advice Line - 0800 882200
Contact-a-Family and Citizens Advice Bureau specialist money advice project - face to face or in the home for families with disabled children - 0808 808 3555
Citizens Advice Buerau Benefits Advice Line 0870 751 0925
Getting about by taxi
If you have a disabled child whose disability or challenging behaviour makes taking public transport difficult, you can apply for a Taxicard to allow you to take taxis at greatly reduced rates. (eg on a fare of £11.80, you pay £1.50, the local borough pays £10.30) Tel 020 7484 2929. (note - not sure at time of writing how the recent cuts will affect this service)
Suggestions for finding additional funding.
The Family Fund
Financed by government and administered by the Rowntree Memorial Trust for children with a severe handicap (and they include autism in this category). There is no formal means test to obtain funds from the Family Fund, though you are less likely to obtain help if your family income is over £23,000 per year or you have savings of over £8000. They have funding for over 80,000 families, so it is well worth applying.
You can apply once a year every year. Things you might apply for could include:
Transport costs (if you are NOT already receiving higher rate DLA mobility allowance)
Visiting costs if the child is in hospital
Specialist play and leisure equipment
Contact them for a form - they will require your name and address and the child's GP. Someone from the Fund will visit to follow their guidelines. From application for funding to a decision is reasonably fast - around 6 weeks. (The Fund can also give you leaflets on other charities who fund children with autism/special needs).
The Family Fund
PO Box 50
Tel: 0845 130 4542
Cerebra -www.cerebra.org.uk <http://www.cerebra.org.uk/>. Tel 01267 244216. This is a small grant scheme offering practical assistance to improve the quality of life of children and young people to age 16 affected by neurological conditions.Examples of grants made are:
touch screen computers/holidays(up to £500)/specialist car seats/approved therapies/trampoline/sensory toys/specialist cycles.
Also Speech and language vouchers for £500 for children who have not received direct input from a qualified SLT for over 6 months.
Frank Buttle Trust - can supply and fit white goods for families in need. Must have application form filled in by a recognised authority. Contact Family Support team at the Markfield for help. 020 8800 4134.
Tottenham Grammar School Foundation
A local fund which help with anything educational provided the school/group or individual lives in the Haringey area. Things you might apply for could be:-
- A computer , Play equipment, Toys, a laptop, classes, (or even maybe an Ipad with special software such as Proloquo2go or TapSpeak.)
You can download a Special Somerset Award form from the Tottenham Grammar School Foundation website - you will need to get your school to sign it and a health professional to agree in writing that your child would benefit from the equipment. Or Apply to : Mr G Chappell, Tottenham Grammar School Foundation, P O Box 30498, London N13 5XU. Tel: 020 8882 2999.
Secondhand computer provision for children with autism in Haringey at use at home. A free service when we have them in stock. Contact Petra Herzig on 020 8883 0060. If you already have a computer but would like suitable software for your child to use on your own computer to help with language development, mouse skills, literacy or numeracy contact Julia 8889 8422.
DISABLED PARKING BADGES
c/o Haringey Council x Disabled Parking. Tel: 8489 0000. These are a godsend to many parents of autistic children with severe behavioural problems, allowing them to park closer to shopping, schools, doctors, etc. You will need to fill in a Blue Badge application form. . For children above 5, you automatically qualify if you receive Disability Living Allowance Mobility Allowance at the highest level. For those at lower levels of Mobility Allowance, you will need a letter of support from a professional such as your GP or health worker to obtain one. Within Haringey, you need to apply to the Disabled Parking dept and send off your documents. They will then send a letter of approval for the badge which you have to take to a Customer Service centre such as the one in Station Road, Wood Green and get the badge in person. The NAS provide a detailed factsheet on 'Blue Badges' telling you how to apply for one which is available on their website www.autism.org.uk(No congestion charge also if you have a Blue Badge! You need to register though and there is a one off £10 charge for this. Write to Blue Badge Congestion Charge, Dept TR 121, FREEPOST, SWC 1539 PO Box 35, Leominster HR6 0ZZ, or e-mail: email@example.com quoting code DN08 and the serial number of your badge)
Tottenham District Community Fund - grants for carers of disabled children who have lived in Tottenham for over 3 years of up to £400 for desparately needed household items and repairs. Contact Mandy at Haringey Autism for more info. 020 8341 2633 or email her on firstname.lastname@example.org