SO disappointed

[BeeMom]

I got a call from the Augmentative Communication therapist this morning to advise me that Bee would be coming home from school with the prescriptions for her new communication equipment and software that she requires. She suggested that we should call the vendor to arrange to get in and purchase it, so it can be set up for her soonest.

We have been waiting months for this, so I was very happy to hear that it was going to be happening before the summer.

Of course, because this is medical equipment and ultra-specialised software, the price tag is exorbitant. There is no way to purchase it other than through these channels.

Well, I just got another call from the therapist to advise me that everything that she has been prescribed (all the equipment, software, mounts, controls and peripherals AND the setup labour for these items) are taxable, and that there are no benefits that cover the taxes (not the Assistive Devices Programme, not Assistance for Children with Severe Disabilities, and there are no others available to her).

I am crushed. At 13% tax, there is no way on Earth we can afford it :( DH is still unemployed, I am on a meagre disability pension from my spinal chord injury years ago. We are barely keeping our heads above water as it is...

The ability to communicate is such a basic right - her needs have been identified, appropriate equipment has been identified, sourced and specified, and once again, because we are neither wealthy enough nor poor enough, my beautiful Bee must go without.

It's just not right

Oh bee thats so so terrible and so unjust

oh that's awful, are there any charities that might help?

No - specifically BECAUSE it is the taxes. The therapist told me specifically that charities will not cover taxes, and I verified it with social work.

There has to be away of raising the money..... Is it £100's or £1000's?

Stupid rules to not cover the tax, I mean who on this earth made these rules....

No no no no no no no! I work in a centre that assesses for AAC regularly, and this sounds wrong.

You could try asking on the Communication Matters forum:
www.communicationmatters.org.uk/page/resources/online-forums
There may be a lovely somebody there who could suggest something.

What a waste of everybody's time and resources up to this point if this becomes an insurmountable hurdle. Has your SLT made any suggestions? How experienced is she in providing AAC? Do you have a regional centre you could call?

I'm guessing it will be well over £1000 that you have been asked to pay.

You could try ringing the Speech and Language charity AFASIC who have a helpline as I bet they could help. See here

So sorry to hear of this, BeeMom.

For those who don't remember, we are not in the UK, we are in Canada.

Different rules, entirely... unfortunately.

It'll likely be close to $1000 when all is told, and with work, we can raise the money, but what disappoints me most is denying her the equipment in the meantime.

We managed to raise money for her bed (hospital beds are not covered here under any circumstances - they are considered convenience items, as toileting and bath safety chairs) I am sure that with time and a lot of effort, we could put together the finds for this, as well.

However, school ends in 3 weeks, and when it does, she will have no access to equipment for the duration of the summer. To take it away from her, especially after all the gains she has made, just rubs me the wrong way...

Bee that is just so very unfair.
As you say communication is just such a basic right.
Can't say anything constructive but for you.