Lost in Transition – Part 4

My Neighbour Totoro

You may never have heard about the classic kid’s movie My Neighbour Totoro. It’s a brilliant and deeply surreal Japanese animation about a size changing rabbit type thingy and a Cat bus. I’m not really selling it but it’s quite something….

...it’s also the movie my boys put on over and over again the day my ex-husband left us.

None of us saw it coming, I’m not even sure my ex saw it coming. It was a Sunday morning and he was gone by 10.30am and that was very much that. The three of us spent the entire day under duvets on our sofa cuddling, eating biscuits, crying and waiting for the sky to get dark and the day to finally die.

I could say it was the worst day of my life but it wasn’t, not by a long shot but it was the worst day my boys had ever had especially for my little one, my sweet little Louis. Louis is Max’s little brother. He’s now 12 going on 42 and that is (I think anyway) because Louis had to grow up too fast.

When Max was at his worst, about 6 years old and Louis 4, I’d got them both super cute red and white striped PJs. They looked like old fashioned illustrations for hard backed children’s books, gorgeous.

The First Time...

The first time Max had a seizure the ambulance men cut his overpriced stripy PJs in half to attach heart monitor stickers. Top tip here dear friends, the sticky residue from heart monitor stickers is really hard to get off a grumpy little boy’s tummy…tonnes of moisturiser works a treat…You’re very welcome.

As the ambulance men hooked up all of their kit, Louis stood at the front door in the dark. It was so cold. It always is when Max has seizures. I’m not sure why but all the doors are left open, I never remember to close them. I also never remember to pack Max’s shoes but that’s another story. By the time Louis was 5 he knew how to operate the oxygen and suction machines. He reminds me to give Max his meds. He also takes the brunt of Max’s postictal rages.

For years I’ve left him with friends sometimes for weeks on end to take Max to appointments, assessments and treatments. He bounces from friend to friend, spare room to spare room. He was such a lonely little boy, I’m not sure much has changed.

Now Max is in Transition, Louis gets to go on the back burner once again. He needs me more than ever but I’m still metaphorically making him stand in the dark in those stripy pyjamas.

When people talk about young carers it sounds like such a small thing. A young carer is someone whose life is significantly impacted by a disabled family member. What it actually means to me is that I stole from him. I made him grow up too fast. I will spend the rest of my life trying to make it up to him. It frightens me but I don’t think I can fix it.

 

If you’re in the same place, you might want to check out these useful links…

The National Autistic Society- http://www.autism.org.uk

Relate - https://www.relate.org.uk

Epilepsy Action - https://www.epilepsy.org.uk

Respite and Babysitting

Respite, Babysitting, Direct Payments & Personal Budgets

respite care for children with special needs

Everyone needs a break. Finding the right babysitter can really improve the quality of your and your child’s life. Your child needs a break from you, too. Whatever your child’s needs, there is always someone out there with the skills to help.

Depending on your child’s needs, you might be able to pay for babysitting through direct payments.

Personal Budgets

The new SEN and Disability reform bill says that your Local Authority needs to prepare a personal budget with your child's care and health plan. Your child's personal budget gives you a lot more choice about the services your child uses to support them. This might include direct payments that you can use to pay your specialist babysitter or respite care provider.

 

How to find a babysitter

Your local authority disabilities team might have a list of carers that they use. Alternatively, if you receive direct payments, your contact there might have a list of preferred agencies. If you want to find one on your own, here are a few places to look.

Your school or special needs school. There may be staff (teacher/teaching assistant/nursing staff) who would like to help out.
Your local hospice. It will often have a specialised outreach team who do respite in-house as well as out and about.
Remember to vet your babysitter carefully and look into their history as much as you can. Your local authority disabilities team will be able to advise you on how to find and vet a babysitter.

You might also find this advice from Directgov on finding and choosing childcare helpful.

 

Need a longer break?

Check out our holiday zone for ideas for short breaks where your child is fully medically supported – many of these are free or low-cost. Alternatively your local hospice may have weekends you can book in advance. Hospices offer support for a whole range of conditions, so check to see if your child might be included.

A lot of local charities also do days out with carers/chaperones. This might include your local Cerebral Palsy or Mencap group. Chat to your disability social worker, school Senco or special needs school to find local groups (Sky Badger will be expanding next year to include a local search facility, so keep checking back). Primary Times also lists local disability activities.

Personal Budgets

Direct payments can be used for a variety of services that offer your child stimulation, new experiences and independence. This includes short breaks, nursery placement with specialist support for your child, assistance to attend an activity, and personal care.

lovehearts_find-me

To get help paying for a specialist babysitter for your disabled or SEN child, you should contact your local Authority's disabilities team.

They will chat to you about doing an assessment. You can gets lots of help once you've signed up. Including help for your other children, short breaks and direct payments to cover your babysitter.

Find your local disabilities team using the Sky Badger local offer directory.

Sky Badger can also help you with...

Personal Independence Payment (PIP)

Education

Find extra help at school, information about Education, Health, Care Plans (EHCP), apps & programmes, tech and IT for supporting learning and sensory activities.

disabled holidays uk

Holidays & Free time

Find holidays, sports, free cinema tickets, theatre, clubs, art, dance, music, days out, make a wish charities and more.

gwvmbgpp-pq-steinar-la-engeland

Useful technology & kit

Find sensory toys, useful technology, trikes and bikes, wheelchairs & mobility.

disabled grants

Finances

Find grants, governemnt benefits and help with your utility and council tax bills.

oqmzwnd3thu-helloquence

Legal stuff

Find out about disability rights, educational and medical law and how to find a specialist advocate or lawyer.

Personal Independence Payment (PIP)

Medical stuff

Find information about your child's medical condition, medicines that they take and mental health support.

Not sure where to turn?

istock_000021104923large

Contact our helpdesk

Do you need specific help for your disabled or special needs child? Click here to tell us more about what you're looking for and our helpdesk team will do their very best to find you what you need. All of our advice is confidential and we will not share your details or personal information with anyone.

Sports for Disabled & Autistic Children

disabled sports, disabled clubs

On this page you'll find tonnes of exciting new sports for your special needs or disabled child to try.

From archery to water skiing, there is a huge range of sports that a disabled child can take part in. Whether they just want a bit of fun exercise, or have ambitions to be a future Paralympian, these links will help you find something exciting for them. We also have links to governing bodies in our directory – they should be able to put you in touch with a local club so you can try something new.

Disabled Sports and more

There are so many sports to try out whatever your child's interests or needs are. Don't forget to check out our other Sky Badger's guides to finding funding for sports kit and adventure holidays.

On this page, you'll find disabled sports clubs, funding for equipment and local clubs to get in touch with.

football

Find...

  • disabled sports clubs
  • wheelchair sports
  • blind sport
  • wheelchair basketball
  • adaptive skiing
  • disabled cycling
  • wheelchair rugby
  • disabled football
  • wheelchair tennis
  • disability netball
  • English federation of disability sport
  • Sailability
  • Accessible mountain biking
  • Riding for the disabled
  • Disabled flying
  • And much more!

Top 5 Sky Badger Sports to Try...

The RYA Sailability

The national body for all forms of disabled boating, including dinghy and yacht racing, motor and sail cruising, RIBs and sports boats, powerboat racing, windsurfing, inland cruising and narrowboats, and personal watercraft.

Flying!

Aerobility is a registered charity founded in 1993 offering disabled people, without exception, the opportunity to fly an aeroplane. For some, just that amazing first flight is enough to change their outlook on disability forever.

MOUNTAIN BIKING

Authentic mountain bike experiences for disabled riders with a range of abilities.

Wheelchair Rugby

Find a club near you

Boom!

Horse Riding

Riding for the Disabled

Find lots more sports to try here!

Click here to see the Sky Badger Sports directory.

You should also check out the Sky Badger website to find holidays, clubs, grants and much more.

Local Sports Clubs

Click the button below to find your local offer. The Local Offer is a directory that your Local Authority has. It lists all the help and support that you might need to help your disabled or special needs child. You'll find all the disabled and special needs sports clubs listed there.

Local Offer

Click here to find clubs near you.

Sky Badger can also help you with...

Personal Independence Payment (PIP)

Education

Find extra help at school, information about Education, Health, Care Plans (EHCP), apps & programmes, tech and IT for supporting learning and sensory activities.

disabled holidays uk

Holidays & Free time

Find holidays, sports, free cinema tickets, theatre, clubs, art, dance, music, days out, make a wish charities and more.

gwvmbgpp-pq-steinar-la-engeland

Useful technology & kit

Find sensory toys, useful technology, trikes and bikes, wheelchairs & mobility.

disabled grants

Finances

Find grants, governemnt benefits and help with your utility and council tax bills.

oqmzwnd3thu-helloquence

Legal stuff

Find out about disability rights, educational and medical law and how to find a specialist advocate or lawyer.

Personal Independence Payment (PIP)

Medical stuff

Find information about your child's medical condition, medicines that they take and mental health support.

Not sure where to turn?

istock_000021104923large

Contact our helpdesk

Do you need specific help for your disabled or special needs child? Click here to tell us more about what you're looking for and our helpdesk team will do their very best to find you what you need. All of our advice is confidential and we will not share your details or personal information with anyone.

Disabled Child Tax Credits

On this page you’ll find tonnes of information about the extra amount you should be getting if your child is disabled and you get child tax credits. 

This is not an automatic payment, so you must let the Child Tax Office know if you think you're eligible.

Don’t forget to check out our other Sky Badger pages to find out about other benefits for disabled children as well as grants, respite care and much more.

Quick Links

If you want to jump straight to the section that's relevant for you then use these quick links.

Child Tax Credits

What is the Disability Child Tax Credit?

You’ll already be getting child tax credits if you have a child under 16 or under 20 in eligible education or training. If your child is disabled, you should be getting extra help.

You may get extra Child Tax Credits if your child either gets Disability Living Allowance or PIPs.

What is the Disabled Child Element?

The disabled child element is an extra amount that is added into your child tax credits award.

The disabled child rate

A child or young person qualifies for the disabled child rate if they get:

  • any other rate of DLA or PIP or
    are certified as severely sight impaired or blind by a consultant ophthalmologist, or have ceased to be so certified in the past 28 weeks.

The severely disabled child rate 

A child or young person qualifies for the severely disabled child rate if they get:

  • DLA highest rate care component
  • PIP enhanced rate daily living component
Personal Budgets

Contact A Family

Guide to Tax Credits

Revenue Benefits

Understanding Tax Credits

Qualifying for the Disability Component

To qualify for the extra disability component, your child must….

       The disabled child rate

        A child or young person qualifies for             the disabled child rate if they get...

  • any other rate of DLA or PIP or
  • are certified as severely sight impaired or blind by a consultant ophthalmologist, or have ceased to be so certified in the past 28 weeks.

    The severely disabled child rate

    A child or young person qualifies for the severely disabled child rate if they get...

  • DLA highest rate care component
  • PIP enhanced rate daily living component

Does it matter how much I earn?

Your income will affect how much Tax Credit you get. Contact the Tax Credit advice line to check out where you stand.

Boy in the theme of  summer time .

Disabled Child Tax Credits Rates & Entitlements

This comes in two parts, the disabled child rate and the severely disabled child rate.

Disabled Child Tax Credits Weekly Rates

Disabled Child Rate £60
Severely Disabled Child Rate £24 (additional)

How do I Apply?

YOU HAVE TO TELL THE TAX CREDIT OFFICE YOURSELF!

You won’t get this extra payment automatically so give them a ring now....

 

Contact: Tax Credits Office 0345 300 3900.

Other things that might help you…

You should also check out the Sky Badger website to see if you can claim carer’s allowance, young carer’s support, help with your bills, Council tax reductions and much more.

Sky Badger can also help you with...

Personal Independence Payment (PIP)

Education

Find extra help at school, information about Education, Health, Care Plans (EHCP), apps & programmes, tech and IT for supporting learning and sensory activities.

disabled holidays uk

Holidays & Free time

Find holidays, sports, free cinema tickets, theatre, clubs, art, dance, music, days out, make a wish charities and more.

gwvmbgpp-pq-steinar-la-engeland

Useful technology & kit

Find sensory toys, useful technology, trikes and bikes, wheelchairs & mobility.

disabled grants

Finances

Find grants, governemnt benefits and help with your utility and council tax bills.

oqmzwnd3thu-helloquence

Legal stuff

Find out about disability rights, educational and medical law and how to find a specialist advocate or lawyer.

Personal Independence Payment (PIP)

Medical stuff

Find information about your child's medical condition, medicines that they take and mental health support.

Not sure where to turn?

istock_000021104923large

Contact our helpdesk

Do you need specific help for your disabled or special needs child? Click here to tell us more about what you're looking for and our helpdesk team will do their very best to find you what you need. All of our advice is confidential and we will not share your details or personal information with anyone.

Carers Allowance

On this page you’ll find tonnes of information about Carer's Allowance. What is Carer's Allowance, How much is Carer's Allowance, find out if you're eligible and how to apply. You can also find out about Carer's Credit so your NI payments stay up to date.

Don’t forget to check out our other Sky Badger pages to find out about other benefits for disabled children as well as grants, respite care and much more.

What is Carer's Allowance?

If you spend 35 hours a week or more caring for a child who gets the middle or higher rate care component DLA then you might be eligible you Caller’s Allowance. You don’t have to be related to, or live with, the child or young person you care for but you won’t be paid extra if you care for more than one disabled child.

Contact the Carer’s Allowance Unit

Telephone: 0345 608 4321

Textphone: 0345 604 5312

Monday to Thursday, 8:30am to 5pm

Friday, 8:30am to 4:30pm

carers allowance

Carers UK

More guides and information.

Turn 2 Us

More information.

Qualifying for Carer's Allowance

Your child must already get one of these benefits...

  • Personal Independence Payment - daily living component
  • Disability Living Allowance - the middle or highest care rate
  • Attendance Allowance
  • Constant Attendance Allowance at or above the normal maximum rate with an Industrial Injuries Disablement Benefit

You might be able to get Carer’s Allowance if...

  • you’re 16 or over
  • you spend at least 35 hours a week caring for someone
  • have been in England, Scotland or Wales for at least 2 of the last 3 years
  • you normally live in England, Scotland or Wales, or you live abroad as a member of the armed forces
  • you’re not in full-time education
  • you’re not studying for 21 hours a week or more
  • you earn no more than £110 a week (after taxes, care costs while you’re at work and 50% of what you pay into your pension) - don’t count your pension as income
  • you’re not subject to immigration control

You might still be eligible if you’re moving to or already living in another EEA country. The rules are different in Northern Ireland.

Effect on the benefits of the person you care for...

When you claim Carer’s Allowance, the person you care for will stop getting:

  • a severe disability premium paid with their benefits
  • an extra amount for severe disability paid with Pension Credit, if they get one
  • Reduced Council Tax - contact their local council to find out if this affects them

Effect on your benefits

When you claim Carer’s Allowance your other benefits may be reduced, but your total benefit payments will usually either go up or stay the same.

Carer’s Allowance doesn’t count towards the benefit cap.

If you get Working Tax Credit or Child Tax Credit, you must contact the Tax Credits office to tell them about Carer’s Allowance claim.

Use a benefits calculator to work out how your other benefits will be affected.

Carer's Allowance Rates & Entitlements

Personal Budgets

Carer's Credit

You could get Carer’s Credit if you’re caring for someone for at least 20 hours a week.

Carer’s Credit is a National Insurance credit that helps with gaps in your National Insurance record. Your State Pension is based on your National Insurance record.

Your income, savings or investments won’t affect eligibility for Carer’s Credit.

What you'll get...

If you’re eligible for Carer’s Credit, you can get credits to help fill gaps in your National Insurance record.

This means you can take on caring responsibilities without affecting your ability to qualify for the State Pension.

Eligibility

To get Carer’s Credit you must be:

  • aged 16 or over
  • under State Pension age
  • looking after one or more people for at least 20 hours a week

The person you’re looking after must get one of the following:

  • Disability Living Allowance care component at the middle or highest rate
  • Attendance Allowance
  • Constant Attendance Allowance

If the person you’re caring for doesn’t get one of these benefits, you may still be able to get Carer’s Credit. When you apply, fill in the ‘Care Certificate’ part of the application form and get a health or social care professional to sign it.

Carers who don’t qualify for Carer’s Allowance may qualify for Carer’s Credit.

Breaks in caring and eligibility

You can still get Carer’s Credit even if you have breaks from caring (up to 12 weeks in a row).

For example, you’ll still get Carer’s Credit for 12 weeks if:

  • you take a short holiday
  • someone you look after goes into hospital
  • you go into hospital

Keep the Carer’s Allowance Unit updated if you have a break in caring of more than 12 weeks in a row.

Other things Carer's Allowance allows you to apply for…

You’ll automatically get National Insurance credits. You might also be able to apply for support from your local council and a Council Tax Reduction.

See Sky Badger's Finance pages for more information on benefits, grants and much more.

Sky Badger can also help you with...

Personal Independence Payment (PIP)

Education

Find extra help at school, information about Education, Health, Care Plans (EHCP), apps & programmes, tech and IT for supporting learning and sensory activities.

disabled holidays uk

Holidays & Free time

Find holidays, sports, free cinema tickets, theatre, clubs, art, dance, music, days out, make a wish charities and more.

gwvmbgpp-pq-steinar-la-engeland

Useful technology & kit

Find sensory toys, useful technology, trikes and bikes, wheelchairs & mobility.

disabled grants

Finances

Find grants, governemnt benefits and help with your utility and council tax bills.

oqmzwnd3thu-helloquence

Legal stuff

Find out about disability rights, educational and medical law and how to find a specialist advocate or lawyer.

Personal Independence Payment (PIP)

Medical stuff

Find information about your child's medical condition, medicines that they take and mental health support.

Not sure where to turn?

istock_000021104923large

Contact our helpdesk

Do you need specific help for your disabled or special needs child? Click here to tell us more about what you're looking for and our helpdesk team will do their very best to find you what you need. All of our advice is confidential and we will not share your details or personal information with anyone.

Disability Living Allowance (DLA) for Children

DLA

On this page you’ll find tonnes of information about the Disability Living Allowance for children under 16 (DLA). Don’t forget to check out our other Sky Badger pages to find out about other benefits for disabled children as well as grants, respite care and much more.

Quick Links

If you want to jump straight to the section that's relevant for you then use these quick links.

What is Disability Living Allowance (DLA)?

Disability living allowance is the main benefit for disabled children under 16. DLA is designed to help you cover the extra costs that you might face because of your child’s disability. The range of levels is wide, from a little extra help for children with learning disabilities to severe disability both mentally and physically.

What’s really important to remember about the DLA, is that it is about how much extra care and support your child needs not what their diagnosis is. In fact even if your child doesn’t have a diagnosis yet, you can still claim DLA. You will of course need good evidence of how their needs impact them day to day life. The key issue is that they have extra needs that other children their age don’t have.

To claim DLA, you have to fill in this form BUT please read the rest of this article first before you start!

The Disability Living Allowance helpline...

DLA Rates & Entitlements

DLA comes in two parts, the Care and Mobility components. Here are the current DLA rates:

Care Component Weekly Rates

Lowest £23.60
Middle £59.70
Highest £89.15

Mobility Component Weekly Rates

Lower £23.60
Higher £62.25

Mobility & Care components

Care Component

This part is designed for children that need extra help day to day including their personal care. It comes at three levels. For the lower level, your child will need at least 1 extra hour of help in 24 hours. For the higher rates, your child will need help both day and night care.

Lowest rate - help for some of the day or night

Middle rate - frequent help or constant supervision during the day, supervision at night or someone to help while they’re on dialysis

Highest rate - help or supervision throughout both day and night, or they’re terminally ill

Mobility Component

This part is designed to help your child if they have trouble getting around. It comes at two levels of support, lower rate and higher rate.

Low rate mobility DLA

If your child needs lots of extra help in getting around and staying safe but isn’t necessarily physically disabled, then your child might qualify for the lower rate. You’ll need to be really specific about what this extra help is.

Higher rate mobility DLA

 High rate criteria…

  • unable to walk
  • virtually unable to walk
  • the exertion required to walk would constitute a danger to their life or would be likely to lead to a serious deterioration in their health
  • have no legs or feet (from birth or through amputation)
  • severely mentally impaired and show extremely disruptive and dangerous behaviour
  • or have a severe visual impairment; or be both blind and deaf and need the assistance of another person to walk out of doors.

 

Children with Autism and DLA

Children who don’t necessarily have a physical disability but need extra “guidance or supervision” to help them get around may be eligible for the lower rate. However, some children with Autism could also qualify for higher rate depending on their specific needs.

To be eligible for the higher rate, your child must have ‘a severe mental impairment and behavioural problems’ or be ‘virtually unable to walk’.

These phases are horrid but they are only words so please don’t take it to heart. This is after all about getting the help your child needs to allow them to live as full a life as possible.

More detailed advice about applying for DLA for an Autism Child

There are a couple of fab guides that we’ve linked to here that will help you work through your application for DLA if your child has learning disabilities or Autism…

Contact A Family

Guide to DLA

Tips for Parents

National Autistic Society Guide

Qualifying for DLA

To qualify for DLA your child must….

  • be under 16
  • need extra looking after or have walking difficulties
  • be in Great Britain, another European Economic Area (EEA) country or Switzerland when you claim - there are some exceptions, such as family members of the Armed Forces
  • have lived in Great Britain for 2 of the last 3 years, if over 3 years old
  • be habitually resident in the UK, Ireland, Isle of Man or the Channel Islands
  • not be subject to immigration control
  • There are some exceptions to these conditions if the child is living or coming from another EEA country or Switzerland.

How old does my child need to be?

This depends on lots of things but you can get higher rate mobility for your child from the age of 3 and the lower rate from the age of 5. There is not a set lower age limit for the carer’s component. However If your child has a life-limiting condition, DLA is payable for the age of 3 months.

What about my income & savings

DLA is NOT MEANS TESTED. So your income and savings don’t matter at all and are not relevant in your child being eligible for this benefit.

gwvmbgpp-pq-steinar-la-engeland

A Step-by-Step Guide to filling out the DLA Form

Click here to get a guide on each question, terminology used and some excellent top tips!

It costs three times more to raise a disabled child as it does to raise a non-disabled child….

So find your child a grant and other help here!

Other things DLA allows you to apply for…

If you qualify for DLA higher rate mobility, then you can also use the Motability Scheme and automatically qualify for a Blue Badge from your Local Authority. You should also check out the Sky Badger website to see if you can claim carer’s allowance, young carer’s support, help with your bills, Council tax reductions and much more.

DLA and how it affects other benefits

Getting DLA can lead to an increase in other benefits or help you qualify for other entitlements. Even if you get DLA for your child already, you may find that getting an increased rate will lead to something else.

The following is a checklist of benefits and entitlements which may become available following an award or increase of DLA.;-

Carer‘s Allowance (CA)

If your child gets the middle or the highest rate of the DLA care component, you may be able to get Carer’s Allowance (CA). You must be caring for your child for at least 35 hours of each week. To get CA, you must not be treated as a full-time student and not earning more than a set amount, after certain deductions.

Carer’s Allowance can be backdated in line with the DLA award, as long as you apply within three months of getting the DLA decision. If you apply later, Carer’s Allowance can only be backdated for three months.

CA can affect entitlements like Income Support and tax credits. In most cases you will still be better off. If you get Incapacity Benefit, or contributory Employment and Support Allowance, it could also be in your interest to apply for CA, even though it can’t be paid on top of these benefits.

Child Tax Credit (CTC)

Child Tax Credit is assessed more generously when a child gets DLA. Families will qualify for an extra disability element (and a severe disability element if your child is on the highest rate DLA care component). The disability and severe disability elements can be backdated in line with the DLA award if you tell the tax credit office within one month of a decision to award DLA.

If you have previously been refused or never claimed tax credits because your income was too high, you may find that you qualify for the first time as a result of your child being awarded DLA (or having their care component increased to the highest rate.

Income Support (IS)

For families still getting payments for their children in their IS, getting DLA will lead to extra money being added to your IS, known as a disabled child premium (and an enhanced disability premium if your child is awarded the highest rate of the care component).

You will need to let the office dealing with the IS claim know about the DLA award.

If your child gets Employment and Support Allowance in their own right, an award of the highest rate of the care component of DLA may lead to an increase in this benefit. Let the office dealing with these benefits  know about a new award of DLA or any change to the existing award.

If your child gets Income Support in their own right, then an award of DLA can lead to an increase in their benefit. This is because they will qualify for the disability premium (and the enhanced disability premium if they’re awarded the highest rate of the care component).

Help with rent and council tax If you get Housing Benefit or support with council tax, then getting DLA for your child may lead to extra benefit if you are not already getting your rent and council tax met in full. If you don’t get these benefits but are liable for rent or council tax then you may find that getting DLA will help you qualify for the first time. If your disabled child cannot share a

bedroom and because of this your Housing Benefit is reduced under the bedroom tax or local housing allowance rules, getting DLA care component at the middle or highest rate for them may help you get more Housing Benefit.

Both Housing Benefit and support with council tax are means-tested and any award will depend on your income and circumstances.

There are other ways of getting help with council tax which don’t depend on income or savings but do depend on there being a disabled occupant within your household.

Universal Credit

Universal Credit is a new benefit that will replace tax credits and other means-tested benefits for people of working age. If you receive Universal Credit and a child who is included in your Universal Credit claim gets DLA, you will qualify for extra Universal Credit payments.

In most parts of the UK Universal Credit does not yet apply to families with a disabled child. However, families with a disabled child will be asked to claim Universal Credit if they live in a postcode area where the full Universal Credit service has been introduced and they try to make a new claim for one of the means-tested benefits or tax credits that Universal Credit is replacing, At the time of writing the full Universal Credit service only applies in a small number of postcode areas in England and Scotland, however it will gradually be extended to many more areas and is expected to cover the whole country soon.

Things to be aware of that may affect your DLA Claim….

Going into hospital or a care home

DLA can be affected by your child having overnight stays away from home. There are different rules for this depending on whether your child goes into hospital or a care home.

Stays in hospital

If your child is under 18 when they enter hospital, their DLA can continue to be paid for the whole time they are there.

Stays in a care home

If your child is in a care home (which usually includes residential schools), generally payment of the care component will stop after 28 days. However, they can be paid the care component for any day they stay in your home, including the day they leave and the day they return. The mobility component is not affected by stays in a care home. The rules differ if your child’s stay in a care home is funded by NHS continuing healthcare, or if you pay for the care home yourself.

Other DLA Advice...

1zr3wnstnvy-aaron-burden

Disability Rights

Information on the DLA

Contact A Family

DLA for children with learning difficulties

Parents & Carers Tips

The National Autistic Society

Cerebra

DLA Guide

Sky Badger can also help you with...

Personal Independence Payment (PIP)

Education

Find extra help at school, information about Education, Health, Care Plans (EHCP), apps & programmes, tech and IT for supporting learning and sensory activities.

disabled holidays uk

Holidays & Free time

Find holidays, sports, free cinema tickets, theatre, clubs, art, dance, music, days out, make a wish charities and more.

gwvmbgpp-pq-steinar-la-engeland

Useful technology & kit

Find sensory toys, useful technology, trikes and bikes, wheelchairs & mobility.

disabled grants

Finances

Find grants, governemnt benefits and help with your utility and council tax bills.

oqmzwnd3thu-helloquence

Legal stuff

Find out about disability rights, educational and medical law and how to find a specialist advocate or lawyer.

Personal Independence Payment (PIP)

Medical stuff

Find information about your child's medical condition, medicines that they take and mental health support.

Not sure where to turn?

istock_000021104923large

Contact our helpdesk

Do you need specific help for your disabled or special needs child? Click here to tell us more about what you're looking for and our helpdesk team will do their very best to find you what you need. All of our advice is confidential and we will not share your details or personal information with anyone.

Free Tickets (CEA Card) & Autism Friendly Cinemas

CEA card and Autism friendly cinema

Would you like free cinema tickets every time you take the family to the pictures? Or perhaps you’re looking for a cinema screening that is autism friendly? Then you’ve come to the right place!

The Cinema Exhibitors' Association Card (CEA Card)

The Cinema Exhibitors’ Association Card is a cinema card for disabled children over the age of 8 that gives a parent or carer a free adult cinema ticket whenever they accompany a disabled child to the cinema. In effect, this is a carers card to take your child to the movies. To qualify for the CEA card, you must be receiving Disability Living Allowance or Attendance Allowance, or be registered blind. Except for a small processing cost (£6), the CEA card gives you cinema free tickets so you can help your disabled child go to the movies.

You can use the CEA card in most cinemas. Pop your postcode in here, and you’ll get a full list of participating venues near you.

 

To apply for your CEA card you’ll need to send a passport-size photo of your child, plus £6.

 

autism

Autism Friendly Cinema

There are now nationwide autism-friendly screenings, which have low lights and the volume of the soundtrack turned down a little. Your kids can move around, make noise or take a break during the film – no need to apologise!

Into Film

Into Film can help you set up a film club. Your club can be accessible to autistic children in your school or group. They can also give you relevant teaching resources.

Picturehouse cinemas

All do autism friendly screenings

Dimensions

Work with ODEON, Cineworld, Vue and Showcase cinemas to host screenings

Vue

Austism friendly screenings

Odeon

Austism friendly screenings

Disabled Friendly Cinemas

All cinemas have to make ‘reasonable adjustments’ to help your disabled child go to the cinema.

Cineworld

Disabled facilities guide

Odeon

Disabled facilities guide

Find all cinema info in the directory

Browse our directory to find useful links

Sky Badger can also help you with...

Personal Independence Payment (PIP)

Education

Find extra help at school, information about Education, Health, Care Plans (EHCP), apps & programmes, tech and IT for supporting learning and sensory activities.

disabled holidays uk

Holidays & Free time

Find holidays, sports, free cinema tickets, theatre, clubs, art, dance, music, days out, make a wish charities and more.

gwvmbgpp-pq-steinar-la-engeland

Useful technology & kit

Find sensory toys, useful technology, trikes and bikes, wheelchairs & mobility.

disabled grants

Finances

Find grants, governemnt benefits and help with your utility and council tax bills.

oqmzwnd3thu-helloquence

Legal stuff

Find out about disability rights, educational and medical law and how to find a specialist advocate or lawyer.

Personal Independence Payment (PIP)

Medical stuff

Find information about your child's medical condition, medicines that they take and mental health support.

Not sure where to turn?

istock_000021104923large

Contact our helpdesk

Do you need specific help for your disabled or special needs child? Click here to tell us more about what you're looking for and our helpdesk team will do their very best to find you what you need. All of our advice is confidential and we will not share your details or personal information with anyone.

Autism

What is Autism?

As the old saying goes, “when you meet one child with Autism, you’ve just met one child with Autism.”

There are about 100,000 children in the UK who are on the autistic spectrum. Each child is different. But in general terms your child might have problems relating to other people or find it tricky to feel part of everyday life. The range of abilities, skills, brilliance and need is so different for every child on the spectrum and that’s why Sky Badger has put everything you might ever need in one place.

autism

Signs of Autism

Autism is tricky to diagnose before your child reaches 24 months but there might be signs in terms of some benchmarks not being met in how your little one communicates with smiles, expressions or gestures. You might also notice your child not making words by the time they turn 16 months, not responding to their name by their first birthday or loosing speech or social skills….but please don’t panic!  Just contact your GP or health visitor and talk through your concerns.

When your child gets older signs of autism might include...

  • Avoiding eye contact
  • Delayed speech
  • Getting really upset by changes in routine
  • Being seriously obsessed with certain interests like Tomas the Tank Engine or Superheroes.
  • Big reactions to sensory stimulus like smells, textures or lights.
  • Having trouble understanding other people’s feeling
  • Struggling with jokes or sarcasm
  • Really enjoying repetitive behaviours like flapping, clapping and fiddling

But again, please don’t panic. Autism is complicated. Your child’s uniqueness might be just that. On the other hand, if they are on the Autistic Spectrum, there is a lot of help out there for all of you. A diagnosis doesn’t change your child. It just makes the way you parent better informed and more effective. If you’re worried, go to your GP or Teacher and ask that your child be tested.

Autism Test

If your child is at pre-school, you can ask your GP or health visitor to give your child the Modified Checklist for Autism in Toddlers (M-CHAT). This is a little test for children from 16-30 months. This doesn’t give your child a diagnosis but it will give you a better idea if you want to move forward to a proper assessment. If your little one is already at school, talk to your SENco. They are the teacher responsible for special needs at your child’s school and will chat to you about what getting a diagnosis means.

If your GP, health visitor or SENco thinks your child might have a problem, then they will refer them for a formal assessment. This should be a multi-disciplinary diagnostic assessment with lots of different specialists. You may also get support from am occupational therapist, speech therapist or educational psychologist during this process.

It may take a little while to get an assessment date.

what is autism

The Autism Assessment

This might take a few different appointment. There will be a lot of paperwork involved including school/nursery reports, a physical exam, lots of cognitive, behavioural, developmental and mental health assessments, and full family history.

Ask lots of questions, its fine. Write them down in advance and take a notebook with you if anything pops up during or after the appointments.

There are different ways to diagnose children on the autistic spectrum but they will probably follow the following...

 

The results of the assessment might be complicated too so ask for clarification or further information. You are about to become experts after all and this is just the beginning of your journey.

With your diagnosis, you can start planning to get the support in place that your child needs. Speak to your SENco, GP or health visitor and get their opinions too. You might also be referred to your local Child Development Centre to specialist support and information.

autism

Now What?

You may just have had your child’s diagnosis or be years down the line. Either way, Sky Badger definitely has information you should know about. So if you’re looking for grants, IT advice, extra help at school, support for your other children, the perfect family holiday destination, communication aids or pretty much anything else….well, then you’ve come to the right place.

Check out our holidays section to find free, low cast and Autism friendly holidays. Try our finance section to find grants for IT or how to apply for DLA and don't forget to look at our education section to get help at school or sort out your child's EHCP. If you can't find what you're looking for, just contact our helpdesk and we'll always do our best to help.

Please look through the Sky Badger website to find your own bespoke package of support. If you can’t find what you’re looking for, then feel free to contact our helpdesk and we’ll do our best to find the right help at the right time for you and your whole family.

Here are some other organisations and charities that you might find useful too…

KS2 maths

Ambitious about Autism

Ambitious about Autism is the national charity for children and young people with autism. They provide services, raise awareness and understanding, and campaign for change.

what is autism

The National Autistic Society

Providing specialist help, information and care across the UK, depending on where you live, they provide information, residential homes, one-to-one support, support in your home, day-time hubs and support in further and higher education.

gwvmbgpp-pq-steinar-la-engeland

Autism UK

Autism UK provides training, research, a forum and lots more useful information.

Child Tax Credits

Resources for Autism

Resources for Autism provide practical services for children and adults with an autistic spectrum condition and for those who love and care for them.

StockSnap_NAOWFGI5EF

Autism Education Trust

The AET is a partnership of a wide range of individuals and organisations focused on improving the education of children and young people with autism from the voluntary, public and private sectors.

direct payments

Research Autism

Research Autism is the only UK charity exclusively dedicated to research into interventions in autism. They carry out high quality, independent research into new and existing health, education, social and other interventions.

Not sure where to turn?

istock_000021104923large

Contact our helpdesk

Do you need specific help for your disabled or special needs child? Click here to tell us more about what you're looking for and our helpdesk team will do their very best to find you what you need. All of our advice is confidential and we will not share your details or personal information with anyone.

Lost in Transition – Part 8

The English Patient

I’ve just had a lovely catch up with one of Max’s consultants. She really is lovely. It’s funny how spending time with someone that you’ve shared the very worst of times with can bring such laughter and friendship. I suppose it’s like a private member’s club that no one wants to be a member of. I do so appreciate the company.

 

Let’s call her Dr Bob. You see Max’s condition(s) haven’t changed so he doesn’t see the specialists as often as he used to. There’s a bit in the back of my mind that wonders if consultants get bored and want to figure out the fun, groovier conditions…something more entertaining, more likely to get an appalling disease named after them perhaps?

I’m not complaining though, really...

I’ve always hated that constant panicky, sinking feeling in consultant’s waiting rooms. You know that feeling when you know your baby’s future hangs on the next test result and you’re stuck in a full waiting room opposite the squirmy, screaming toddler and all you can do is smile kindly?

What you actually what to do is go home and on the way buy a great big chocolate cake and a bottle of wine. Then close the curtains, put on a boxset and eat the cake with a serving spoon with a ‘do not disturb’ sign on your front door.

So, yup, I’m happy I don’t have the hospital runs to London, Cambridge, Northampton, Bedford, Ipswich…and well, it’s a good thing.

The appointment I’ve just had was to get an up to date medical report to submit to Max’s transition meeting. The school have also managed to squeeze in his next annual review too so the report can multi-task which is a fine thing indeed.

There is something about a certain type of Paediatric Consultant that feels like a hug. It feels like teamwork, like everyone is working together to make Max’s life as ‘average’ as it can be. You know, I never thought I’d be fighting for average. And I never thought average would be so very hard to get. Damn.

So dear Dr Bob, I’m so glad you’re fighting for Max too. Most importantly, I’m so proud that Max has this undefinable factor that means that people don’t forget him, they see him as the precious little man I know he is.

If you’re in the same place, you might want to check out these useful links…

The National Autistic Society- http://www.autism.org.uk

Epilepsy Action - https://www.epilepsy.org.uk