Okay, so we’ve been up since 3am. Sadly, this isn’t unusual. Lots of SEN, Special Educational Needs, parents like me live off of caffeine and nervous energy, as our kids struggle to get a good night’s sleep. Last night, however, our daughter woke up because her incontinence pad leaked and soaked the bed. This is unusual, and this only happened because (owing I am sure to competitive tender) the incontinence supplies brand has been changed to a cheaper one. They’re too big, they leak. For the same reason, yesterday she had an accident on the school bus.
A choice to change suppliers was made by bureaucrats seeking to save a buck or two. It’s the same, but it’s not the same. We’re lucky that our daughter copes quite well with these kind of changes, but for other ASD kids, the change of colour alone could cause meltdowns. So, I’m emailing, complaining, consulting other SEN parents with the same issue – I’m filling up my coffee cup again. Incontinence services do their best to be helpful, but they are inundated and the products they have to use prove inefficient. I’m so tired of having to fight for the basics just to get by, and as austerity continues to bite, it only gets worse.
Now, you may be thinking “just buy better nappies”. The truth is that, because children’s incontinence supplies for Over 4s are thankfully NHS funded, there are very little available on the market. The only real choice is overnight bed wetter’s nappies. These usually cost £8 for twenty, so 40p a nappy. Let’s say she uses 5 in a day… that’s £2 per day, or £730 per year!
A couple of weeks ago, Surrey announced the results of their competitive tendering process for short breaks. ‘Short breaks’ is basically a euphemism for respite care. It’s not a luxury, but a necessity that stops millions of us from becoming so exhausted and mentally unwell that we are unable to cope with the burden of caring. It saves the nation millions. In some areas, well-established, trusted and loved schemes that are able to accommodate even the most complex of medical or behavioural needs have lost their contracts. Again, let’s cue ASD meltdowns due to change, even if the alternative providers are up to par, which seems unlikely when they have less specialist knowledge and are unable to offer the same level of one-to-one support.
Let’s just look at that for a second. One-to-one. If, like me, your child requires one-to-one, that means they need constant supervision either for their own safety or the safety of those around them, or both! If they need supervising constantly, this means that exhausted parents are supervising them constantly, and it will be those families for whom respite is the most vital.
If you think this is unacceptable, what can you do?
Have your say with the online Surrey survey about proposed changes to short breaks –
Like the Save Our Respite campaign page and get involved in direct action – https://www.facebook.com/Save.Our.reSpite
Finally, and most importantly, when you go out to vote next month, don’t just think about how this will effect me. Think about how this would affect me or my family if luck dealt us a different hand. Think about whether you want a system that protects and cares for the most vulnerable, or one which assumes vulnerability is a choice, or a result of fecklessness. Think about what kind of society you want to be part of.