Why fundraise?
It's simple.
Did you know..
A 2014 study showed poverty is especially high among families where there is an adult who is disabled, at nearly 33%. If there is a disabled child, the poverty rate is 40% – more than twice the rate where there is no disability.
This was pre-pandemic and pre-energy price rises. Households with a disability, especially those which require medical equipment to be plugged in, are predicted to need to make hard decisions with the new costs. Choices that nobody should have to make. Like between life saving equipment being plugged in, and having food to eat.
The Disability Price Tag
A 2019 report from Scope found that the average "Disability Price Tag" costs an additional £581 per month for families with disabled children. That's not even taking into account the "big ticket, one off purchase" items.
Read the full article HERE
Disabled equipment costs money, and it's not always easy to get from the NHS or council. Unless you need it to physically survive I.E breathing equipment or wheelchair if you physically cannot walk, then you have to fight just to be given the opportunity to prove you need the support.
I don't mean it costs normal amounts either, I mean it COSTS. For example:
A standard high back booster you can get from around £20.
A disability supportive high back booster is from £200.
That's a 900% uplift.
For something that is a legal requirement to ensure safety of children traveling in a motor vehicle.
Car seats aren't something you get from the NHS or government. No matter how disabled you are. There are grants that can subsidise or pay for them, of course. But they are in high demand, and they can only fund so many. Yet it costs 900% more to keep your child safe if they are disabled.
Is it any wonder that families with a disabled member are more likely to be living in poverty?
Our Fundraising Goals
I want to break down the main things we, as a family, are in most need of and fundraising for.
Disability Pushchair.
Basically a pushchair which can hold a bigger weight.
Our big boy can walk and wants to walk. But not very far. Not very long. And not at any pace.
On average after 10minutes of walking he begins to complain and will have had a couple of stumbles or trips. Within 20minutes he is outright refusing, crying, complaining his legs hurt, falling regularly and majorly emotionally unregulated as he has multiple meltdowns.
Can you get a pushchair through the NHS? No
How expensive can a stroller really be?
For starters, how many people have to buy a stroller for your 4year old? You don't. So you don't have the expense at all… but if you did:
https://www.amazon.co.uk/dp/B08VG5MC7T/ref=cm_sw_r_apan_glt_i_ERSNA13JK8KP98J1YJD4
https://www.amazon.co.uk/dp/B08KJJS63N/ref=cm_sw_r_apan_glt_i_36WQR5RJGZT0WW6FP0AV?_encoding=UTF8&psc=1
That's an extra £150 for something so flimsy looking but would allow us to have family days out which end as happily as they start.
Therapies
Physiotherapy
Physiotherapy congratulated us the other day for doing all we can to help Leopold's gross motor skills and body awareness to develop. We have him taking 1:1 swimming lessons and dance lessons once a week. He loves them and we are so glad we have got him good teachers who support us and him with his development.
We were told there is no point in giving him a physio programme as he learns from his peers (which we agree with) and that in actual fact swimming and dancing are the best therapies he could have.
But that comes out of our pocket.
Dance lessons, 30mins, once a week cost £5 a session.
Swimming lessons, 30mins, once a week and has to be 1:1 for him to learn and for his safety and support costs £30 a session.
We are paying £35 a week for what is deemed to be "the best physio therapy" and so he isn't even receiving physio support from the NHS.
Now you can argue we have chosen to do these, and I agree. However, Leopold's intellectual disability means that he most likely won't learn to swim through the school, and it won't be deemed a "problem" until he leaves primary school unable to swim. By that point it could very well be too late to try and teach him. For the same reason he couldn't and wouldn't be able to join a group class, which leaves us with the only option of 1:1 lessons. Which are twice as expensive. So if we just take into account the uplift for private lessons, that's £600 a school year which other parents won't have to pay.
Speech and Language
Leopold has been discharged from speech and language because he was able to get the "little horse the grapes"
Yes. The little horse the grapes.
"Apparently" this shows he can communicate and understand as well as a 3 year old should (I did keep pointing out that he was 4, but what do I know? I only birthed him).
Even the neurologist doesn't agree and feels he needs communication support, but if he doesn't meet the "criteria" then the NHS just cannot stretch to it.
So the only option we are left with is private. Private Speech and Language sessions once a month for a year, would start from around £1000.
Garden Toys
I don't mean a bike or a trampoline or a football.
This is the solid, well built, sturdy play sets.
Like the wooden framed slides which won't topple as Leo pulls himself up. With a large guarded top platform so he can't fall from the top when he loses balance. And high sides so he doesn't roll over the edge on his way down.
Most kids will have a slide or a swing, or even both, in their back gardens right?
By 4 they can use them with supervision but not really any actual help.
We have some old classic garden toys, but Leo has outgrown them and so they are no longer safe for him.
Yes we can and do take him to the park. But what about when we are playing in the garden in the summer. Do we leave the unsuitable equipment so his sister can play but tell him he isn't allowed to "have fun" on his own toys? Or do we take them all away so that neither of them can play?
Let's check out another price comparison:
What about a swing seat?
Something simple. Most kids could have a plank of wood with some string on a tree. Leopold doesn't have the muscle tone to support his body, so we need an "inclusive" seat.
https://www.amazon.co.uk/dp/B01JAAG2F2/ref=cm_sw_r_apan_glt_i_1435B922B82DBWJYKC3Y
https://www.rhinouk.com/product/child-full-support-swing-seat/
That's over £200 more. For the seat. Not even the entire swing.
Cost Breakdown
Ignoring the fact that most 4year olds won't require a pram, just funding the uplift of all of these things will cost us nearly £2000, and £1600 of that is annually.
Just4Children
So just4children I hadn't really heard of before. So I had a bit of a goggle and found out they are AMAZING. Okay, so raising money for individuals is difficult. Life can be cruel, but so can people, and some people scam and some lie and some cheat, but with just4children it's nigh on impossible.
They control the money.
Every donation to Leopold's campaign goes through them and into their account and is registered as "for Leopold ''.
Then when we have the funds, and find the right equipment or service provider we still don't see a penny. The company providing the good or services will invoice just4children. Just4children will then deliberate on the needs and suitability of the products at panel, if they deem it to be in the best interest for the health, development and safety of the child they will then pay the invoice direct.
We Do Not touch the money.
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