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

 

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.

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?

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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.

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.

Lost in Transition – Part 3

Ruthless People

Max wants to be a chef...right. So what qualifications should he get? What matters? What will give him the skills and prove he has worth?

This is not my area of expertise so I started by doing that crazy mum thing and went to cafes and restaurants door to door, I asked friends, strangers, I just asked everybody. They all had the same kind, but deeply puzzled, expression as I whittled on. I think they were all a little scared that I was job hunting for my good for nothing lummox of a son. When they realised I was only a little crazy they gave me a bit of time. The list was a great starting point. I might go back in a couple of years to the nice ones for some actual job hunting for Max.

Anyway, there are a tonne of courses that would give Max his golden ticket to a job....or at least take him as far as I could to help him walk head high into an interview.

I started looking at my local colleges and then I hit that proverbial cliff again. Entry requirements. Damn it. Although Max is doing two GCSEs these did not including Maths or English. Why should that matter, he can read a recipe and measure ingredients! He has been predicted a C and a D. Then the GCSE cookery was changed to a different course. Why you ask? If he’s so able? Simple dear reader, as of 2014 all GCSE’s have become academified.

All GCSEs now require a written component under exam conditions. And yes, before you say it, Max would get a scribe to write for him but who’s going to help him organise his thoughts? I’d like to make some flippant joke about brain damage to lighten the mood but seriously, Max has got big problems and the simple fact that he can no longer do coursework based GCSEs means he has been disabled academically more than is bearable.

Max is amazing but his learning ability is like Swiss cheese, so some subjects he’s fantastic at like cookery and some he can’t do and will never be able to understand or do. One of those irritatingly is maths. Why doesn’t 1+1=11? It’s a bit like me and bowling. Many have tried to help, dozens in fact, but I simply can’t bowl. In time I have come to accept my bowling disability, but this maths thing is going to be a great big noxious elephant in the room.

I took each college course in turn checking out their admissions criteria,

“3 GCSEs at grades A*-G or 9-2 ideally including English and maths, and a keen interest in catering.” “3 GCSEs at grades A*-G or 9-2 ideally including English and maths” “You will need GCSEs at grade D or better - including English and Maths” “Students are required to have an English and Maths qualification at Entry 3.”

All getting a bit Grrr, I then follow up with a begging phone call to each college, an excepting pretty please? But there was no budging. And I hadn’t even begun to add into the mix all of Max’s other medical and learning problems. It turns out that now everyone going onto a college courses have to have a certain level in Maths and English. It doesn’t matter if they’re studying beauty therapy, catering, fine art or underwater sports management. There is no way to break this rule. So let’s see if I can bend it just enough to keep my promise to Max.

 

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

IPSEA - https://www.ipsea.org.uk

Preparing for Adulthood- http://www.preparingforadulthood.org.uk

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

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