Lost in Transition – part 11

The Man Who Came to Dinner

I've just got back from our first family holiday with my boys and my newly (in)significant other ‘Bob’. I wasn’t going to share this because I thought it might be a little close to home but seeing as divorce rates for parents of disabled children is through the roof I thought it might be handy to share.

All a bit of a scary idea really, proper time with my two boys in a confined space without wifi. Suicide in retrospect.

It should also have been apocalyptic weather but the Norfolk gods smiled kindly on us and we had a blissful time. A good thing too because all of them absolutely refused to play Pictionary with me (can't think why!). It’s not as if I went to St. Martins School of Art and worked as an artist for 15 years…. actually it is just like that.

But in short we had three days on the beach making sand sculptures, massive sand castles filled with lego figures and flags and Louis on his skimming board darting along the water's edge. We ended each day by toasting marshmallows while telling ghost stories and finally went seal watching at sunset. The kind of English holiday that memories are made of.

The boys were both seriously needy though...

It was as if they had to be 10cm from me at all  times. They even kept tripping me up walking in front of me. I get it, really. First holiday after the divorce with somebody else in tow. It's all a bit challenging changing the dynamic. After all they've had enough change for a lifetime. But Bob as usual was incredibly kind and patient. He's been here before of course with his two.

He hung back when they wanted me to themselves and answered all of their crazy technical, scientific and historical questions. I may just like Bob a bit more after seeing him with my two. Bob spent every waking minute making sure my boys were the most important people on the planet. He's a charming, kind man.

And now for the introspective bit...

Autism is a different way of seeing the world. It’s another language and Bob doesn’t speak it at all. For me it is weird to realise, but Bob has never met anyone with special needs before. He said something that I’m finding hard to shake,

“I don’t know what Max is thinking”.

Those few words circle like a washing machine. I see dads walk away from their ASD kids all the time. Max isn’t even his.  His own father didn’t stick around so why would anyone stick around if they find stuff tricky and they don’t have any reason to stick around? I’m trying to keep this in proportion. Bob gets on brilliantly with both of my boys. He spent this holiday flying kites, explaining how crystals form and holding my hand when he was sure the boys weren’t watching. He’s a good man. But it’s like throwing an enormous dinner party. Everyone praising the food, crying with the joy of their fully entertained taste buds, naming their first born after the dessert and then a small voice at the end of the table says…”but the starter was a bit salty.” So what do you remember of the evening?…yup, too much salt.

 

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

Lost in Transition – Part 9

Max

The Crying Game

Between you and me I feel waves of guilt resurface when I go to Max’s medical appointments. This is odd, and I really hope I’m the only mum that feels this, but I still kind of blame myself for everything that’s gone wrong for Max. After all, my only job was to grow a baby like everyone else, pretty much everybody else managed it just fine. But somehow I screwed it up and now Max has so many more challenges, challenges he shouldn’t have. Challenges that don’t feel fair.

I find myself thinking about horrid people, bad people, wondering why things don’t seem to happen to them. I read about mums shooting up, boozing it up while pregnant and it makes me crazy. Seriously, I even gave up coffee, did the folic acid stuff and took up Yoga (I hate yoga). I hate feeling like this. I know it doesn’t help to wallow about my pregnancy history with Max but I can’t help myself going back there…perhaps it was that crop sprayer when I went on a walk? Or fumes when I painted his nursery? Maybe it was all those microwave meals in the 80’s? Or the mechanically retrieved meat products, the only stuff I could afford at college? Maybe it was the oil-paint or the canvas primer I worked with day and night? Or maybe it was some genetic curdling and if I had married anyone else then Max would be OK?

And then I think about Max...

And this, dear friends, is why I telling you this. Max doesn’t think his life is unfair. Max is the happiest, coolest kid I know. He loves school, has incredible mates, a girlfriend, he’s talented, he knows what he wants to do, he’s tall, handsome and most importantly he’s happy in his own skin. Max likes himself and everyone else likes him too…so what makes me think I have any right whatsoever to feel anything other than proud?

It turns out that my job was never to grow some mythical perfect little man. It was to help whoever my little man turns out to be to have the most exciting and adventurous journey he can have. And yup, it’s a serious fight some days and that chocolate cake and ‘do not disturb’ sign still call but that’s not what it’s about. Doctor Bob, Head teacher Bob, TA Bob, my extraordinary family, my warrior friends…we’re Max’s team. It’s impossible to feel lost in a team.

 

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

 

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.

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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.

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Useful technology & kit

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

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Finances

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

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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?

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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.

Art, Music, Drama & Dance for Disabled, Autistic & SEN Kids

 

The arts offer a huge range of ways for your child to express his or herself and boost their self-confidence. 

From arts residential weekends for children with cancer and their siblings, to multi-sensory theatre productions for children with multiple learning disabilities, you’ll find dozens of opportunities in these pages.

So if you fancy giving a Rodin sculpture a hug, or dancing like a sugar plum fairy, this is the place to find out how.

Here are a few great ideas to get you started....

 

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Art for Special Needs

The arts offer a huge range of ways for your child to express his or herself and boost their self-confidence. From arts residential weekends for children with cancer and their siblings, to art workshops for children with multiple learning disabilities, you’ll find dozens of opportunities in these pages. So if you fancy giving a Rodin sculpture a hug or if you’re planning a day out, you’ll see that most of the big museums and art galleries have great interactive events for special needs kids either in family or schools groups. Have fun!

A free lending library for pre-schoolers to adults. They cover everything from fine art to space travel to Peppa Pig to Dinosaurs!

Descriptive Folders are available at the Portico. These are free to use. Each folder focuses on two paintings including descriptive text and interpretation in either large print photographic reproductions or  tactile images.

Find loads of other art organisations and ideas...

Use our directory to find lots of groups and adventures.

Music

Music can have enormous benefits for children with physical, emotional, and psychological needs. Music therapy can even help with language development. Technology has opened new doors for special needs children, enabling absolutely everyone to be able to make music for themselves. A great example is soundbeam– a virtual sound machine.

The range of opportunities is extraordinary, from The Squidz Club, which features young DJs and artists in a fun and friendly atmosphere, to The Golden Chord, which translates sheet music into braille. Contact you local authority disability officer and local special needs schools to make sure you’re kept in the loop about special events near you.

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The Squidz Club is a night for young people with learning disabilities (aged 10-25) their friends and families.
Featuring young DJs and artists in a fun and friendly atmosphere. The club is a chance for you to have a good time, make new friends and be yourself!

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Produce music-related and other materials in Braille.

Examples include a piece for an exam, a vocal part for a choral singer, a study score, programme notes, exam papers, books and articles and orchestral parts.

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OpenUp Music empowers young disabled musicians to build inclusive youth orchestras. Together we develop accessible musical instruments and repertoire, challenge expectations and forge new progression routes through the creation of great music.

Browse loads of other musical adventures

Use our directory to find lots of other organisations to make sweet music with.

Drama

Drama can be fun and hugely beneficial for disabled kids whatever their needs. It can stimulate their imagination, their social skills, and improve their confidence and communication. It can even help kids cope with challenging times by giving them a platform to express their feelings. Drama groups are also a great way for your child to meet new friends.

Many special needs drama groups will use all sorts of multi-sensory tools like voicebox technology, hydro-therapy pools, trampolines, aromatherapy, video projection, animations and puppeteering to engage kids even more. Some professional theatre groups also run workshops for kids, so look through our quick links to see what’s out there.

Graeae champions creative platforms for D/deaf and disabled artists, children and young people through our productions, training and creative learning projects.

They provide empowering workshops and training programmes for young artists, led by inspiring role models

ABLEize

ABLEize has a huge collection of theatre and arts clubs for special needs children and young people.

Bamboozle

They deliver magical, memorable, multi sensory experiences for children and young people with moderate to profound learning difficulties as well as those with emotional and behavioural difficulties.

Find loads of other dramatic possibilities

Use our directory to find lots of organisations to play with.

Dance

Dance classes are great fun, great exercise, and a great way for your child to make new friends. It’s wonderful, too, to watch your child express his or herself independently. From wheelchair dancing to dancing lessons for teenagers with learning difficulties, there are plenty of opportunities around – you’ll find links here to get you started.

A good example is ActOne ArtsBase. They run vibrant, all-ability dance, theatre and arts projects all over Hertfordshire and the surrounding area. They make the performing arts accessible to all, regardless of disability or circumstance. http://www.artsbase.org.uk/

A lot of dance classes for disabled kids get unique funding, so are one-offs lasting a few weeks at a time. Contact you local authority disability officer and local special needs schools to make sure you’re kept in the loop and don’t miss out. You may find that some local mainstream dance classes can support your child’s needs.

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Anjali Dance Company enables people with learning disabilities to achieve excellence, provides positive role models and encourages the integration and inclusion of people with learning disabilities in the Arts and in society. Their innovative and pioneering work has created a radical new perspective for contemporary dance.

Anjali also has a successful youth dance company, Young Anjali, and a unique Education and Outreach team of dancers with learning disabilities who teach and lead workshops.

Candoco Dance Company is the contemporary dance company of disabled and non-disabled dancers.

They have learning projects and activities we provide access to the highest quality of work for people participating in contemporary dance for pure enjoyment, or as part of a developing career.

Dance your way to loads of other performances

Use our directory to find lots of other ballet and dance organisations.

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.

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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.

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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?

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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.

Sensory Integration Activities, Sensory Toys, & Autism Apps

Sensory Integration Activities

If you’re looking to find ways to engage your child more in every part of their lives, then here are some great places to start. The range of sensory activities is practically endless. You can start with some basic low cost options like Play Doh, custard powder gloop, sand or water play or bubble wrap.

Here are some of Sky Badger’s favourite recipe links here to make some groovy stuff to stimulate and engage your child.

Sensory Toys & Autism Products

Sensory integration activities and toys can be brilliant relaxation tools for kids with all sorts of complex needs, including autism and developmental delays. They’re also great for a huge range of engagement therapies. There are an enormous range of toys to choose, from sensory chew necklace to chewy bracelet and oral motor chewies.

Sky Badger really likes the information and ranges on offer at these great websites…

Sensory Processing Disorder

Sensory Toy Warehouse

Cheap Disability Aids

Special Needs Toys

1000 Recommended Apps for children with special needs...They have compiled a list of 1000 Apps used by Teachers, Therapists and Parents. This list is a result of endless hours of collaboration by professionals from all over the world.

Use the Sky Badger directory to find lots of other  great Apps & Programmes.

Find more

You can also find everything from light ropes to building your own sensory room to weighted blankets using the Sky Badger directory

Can we help you with anything else?

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.

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Useful technology & kit

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

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Finances

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

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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?

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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.

Theme parks for Families with Disabled and SEN children

Theme parks

Are you looking for a discount Alton Towers Tickets? Or want to know more about Merlin Pass Offers? If you have a child with special needs, there is a lot of help if you know where to look.

A family day at a theme park can be a brilliant but also a wildly stressful experience. There are lots of freebies and help at most theme parks that can make your family outing a fantastic day to remember. First of all, you can get free tickets for your whole family or concessions for you as a carer of a disabled child depending on their needs. You can also queue jump, get priority parking as well as autism awareness wristbands for your child.

Free Theme Park Tickets for The Whole Family

Have you applied to Merlin’s Magic Wand Charity yet?

You can apply for up to 5 tickets (for the child and immediate family members) to have a day out at one Merlin’s attraction. These include: Thorpe Park , Chessington World of Adventures, Alton Towers Resort, LEGOLAND Windsor, LEGOLAND Billund, LEGOLAND Deutschland, Heide Park Resort and Gardaland, London Eye, Madame Tussauds and more.

Eligibility: You can apply for a seriously ill, disabled or disadvantaged children (aged 2 - 18 incl). These applications must be made by EITHER parents/guardians of these children OR organisations which work with these children. Have a look at their website for more information. IMPORTANTLY It can take 13 weeks to receive your tickets. Merlin's Wand Charity
Merlin’s Magic Wand does not provide exit passes these can be arranged directly through attractions.

 

Free Adult Tickets

Most theme parks and attractions will give you a free carers ticket.

This gives you free admission when you or another adult accompanies your disabled child. Call in advance to check what each attraction offers. Some attractions even do a special price for your disabled child as well. Each theme park seems to have a different policy about carer’s tickets so contact the themepark directly giving yourself plenty of time to send off any documents they need before you go. And don't forget to ask about disabled parking!

Queue Jumping

Most theme parks are sensitive to visitors with additional needs and recognise that for some children, waiting in a long line just isn't going to be an option.
 Alton Towers, for example, has a fantastic policy for kids that can't do queues, including those on the autistic spectrum. They will fast-track the child and their family (a limited number of visitors of course).

Autism Friendly Theme Parks

Some theme parks have extra help in place if you have a child with a learning disability. Some parks give you stickers or coloured wristbands for your child so park staff can be at hand if you need them or if your child becomes separated from you. Contact the themepark directly to chat about any extra help you need.

Top 5 Tips on what to take AWAY

  • ID for your child’s condition varies, so we recommend you take copies of your DLA, CEA card, Carers card or anything else you can think of, just in case.
  • You may find you can’t go on certain rides because of your child’s mobility – check ahead of time. Being turned away at the gate can spoil a great day.
  • It’s a good idea to mark the disabled toilets on the map when you arrive.
  • Don’t forget to pack your blue badge, parking can be a lot easier that way.
  • You will be allowed to bring a guide dog but not on the rides!

Get Inspired

Check out other great days out, short breaks and adventures you can have.

Useful Links

Theme Parks UK

This is your independent guide to UK theme parks. All the information you need on the UK's most popular theme parks, including reviews of the best rides, opening times, ticket prices, how to get there, where to stay, events, top tips and lots more.

Gullivers Land

Gullivers has six different parks in three different locations. Check out each location for specific disabled-friendly information.

Thorpe Park

Disability Guide

Legoland

Disability Guide

Drayton Manor

Disability Guide

Oakwood Theme Park

Disability Guide

Can we help you with anything else?

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.

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Useful technology & kit

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

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Finances

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

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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?

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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.

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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...

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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.

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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?

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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.