Every Disabled Child Matters is asking that you email David Cameron to ask that the government rethink its decision to cut disability premiums awarded to families with disabled children. This campaign is supported by Mumsnet.
I would also like to ask you to do this too. For me, for my family and for the other thousands of families out there who will suffer real financial hardship if these reforms are allowed to go through.
The House of Lords voted these cuts through last night, so please spare a couple of minutes to do this.
It's not anything you have to word yourself, simply provide your details and it is done for you. It takes no more than a couple of minutes. Although if you do then please check your email after as no 10 will email you and if you don't click the link it won't go through.
Yesterday The Indpendent ran this article using my family to illustrate how the cumulative effects of cuts are going to affect families. Whilst a good article it doesn't mention that the riding isn't just to calm my son, it's also to exercise his legs and trunk to try and help because physiotherapy resources are so scarce, it doesn't mention that it offers him a chance to socialise with his peers, something he finds almost impossible due to his autism. Rhys isn't the only child with additional needs to use this riding school, there used to be a Riding for the Disabled group based there so their insurance is geared to children with additional needs. It's not the most local stable, but the more local ones can't take him as they are not covered by insurance for children with additional needs like Rhys'. So that incurs additional cost for transport. A scenario all too common for those of us who have children with additional needs, sometimes the local option isn't viable for our children, like the Beavers Colony for my elder son - he has to go to an out of town Colony where the leaders have more experience with children with additional needs.
That article is actually the tip of the ice berg. Now these cuts are happening I have to consider ending all the additional extra curricular activities I have in place for all three of my children, all of whom have autism amongst other complex needs, that I put in place to try and help their physical and social development in place of hideously overstretched NHS physiotherapy and speech and language provision. I'll have no choice if it comes down to that or heat/eat. On the surface of it many may say that's life, that in this recession many families are having to do without extra curricular 'treats', but in our case they're really not treats. The long term effects of this could mean the difference between my children having a level of independence and being able to go out to work or being entirely dependent on what is left of the Welfare State for the rest of their lives.
Like many parents I am ambitious for my children. However rather than hoping they'll go to a good university and get a good career my ambitions for them are that they are happy, that they are able to live independently (albeit with some level of support) and that they are able to work. Ever since my eldest was first diagnosed six years ago I have sought every bit of help and intervention that I can to achieve the best possible life outcomes for them. With these cuts these ambitions may be impossible.
So what do these top ups cover? Mainly they help where the DLA just isn't enough to cover the additional expense of having a child with additional needs. The increased utility bills from the extra laundry we do (continence is not a strong point and when food is a sensory experience it gets everywhere) and obviously they are higher because we are home more than most. Replacement of clothes that have been chewed or wrecked (another sensory thing plus a penchant for walking round on knees). Awkward diets because they won't eat x or y one week and then the next they will eat x or y and not a or b. And yes they would rather opt to starve so no they won't eat when they're hungry. Increased fuel bills to get them to activities and to hospital appointments (no the mobility component doesn't quite cover it). We have to run our own second car in addition to the Motability car as often we need to be in three places at once. Replacing household items that have been hurled across the room and broken. Child proofing the house to prevent them hurting/killing themselves. This list is just the start.
Everything in our lives is a fight. A fight for getting my children a decent education (four years fighting for statutory assessment), a fight for ensuring they get appropriate medical care (I had to transfer my daughter to another hospital to ensure she got prompt cardiac care), a fight for the disability living allowance awards they get. I have appealed twice in the last 12 months about the decisions made for this DLA. It's incredibly draining and sometimes I do hit rock bottom but I can't give up for my children. And this is why I will ask you again now, sign the Every Disabled Child Matters email. For me, for my children and for the other thousands of families out there living in fear today.