Autismum

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Why I’ve Not Had Time to Pick My Nose

First and foremost, happy new year one and all. We all had a very nice and very quiet Christmas and new year. I know you all want some Christmas Pwd, so here goes:

Digging for presents

Digging for presents

pressie

Cool new Pressies

I’ve been really rubbish at keeping the blog going because things have been just stupidly busy here. Early in the new year we found out that respite care for disabled children across the county may well be cut and social services child health and disability team have been massively shaken up. If you want a reminder of just how much respite means to us please read this post in praise of the Pwdin’s lovely ladies.

So far, our respite has remained untouched but others in desperate need of that time to be able to earn a living to keep a roof over their heads and food in bellies have not been so fortunate. So, a good friend and I have launched a campaign to try to get to the bottom of what’s going on and to protect our families from these cuts. I know this is a really local issue, so, the easiest way to summarise is to copy you, my discerning readers, into the letters I have been sending out.

Madam,

A newly formed group of parents and carers of disabled people – mainly children – are extremely concerned about changes that have taken place in County social services and proposed budget cuts that have the potential to devastate our families. I write, today, as a representative of that group and as a concerned parent of a severely autistic and learning disabled four year old.

There has been a huge shake up in County Social Services CHAD (child health and disability) department. A group of us parents are trying to find out what happened and if our children were ever put at risk.  We have been lied to, our social workers removed, our cases dropped without consultation or notification. Our questions have been ignored even when professionals like special needs health visitors have sought answers. So, we have submitted a freedom of information request and are awaiting a response.

Since the shake up, respite care has been withdrawn from families of disabled children with little warning and no explanation. Specialist child minders have not received referrals for some time. Despite the council’s concerns over a £900k overspend in 2012-13 (some went to private sector ventures) year after year the council has underspent on overnight respite for disabled children. Last year the underspend was £80,000. They may use this to justify reallocating much of these funds and to reduce the entire respite budget. An ongoing survey I conducted has already yielded shocking results. It has found that, like me, most parents of disabled children in the county had not received accurate information about the options available for overnight provision. Some families weren’t even aware that overnight respite was available. Many had been misled that it would not be granted due to lack of funds.

Respite can make a huge difference to a family. It can mean the difference between carers being able to hold down employment or living on benefits. It can mean the difference between a child being able to live in his or her own home rather than an institution. It can keep families together and out of poverty. It really is that crucial.

However, it is not simply a matter of the number of hours respite a family receives that makes it invaluable but the quality of that care. Families are increasingly being offered respite with agency providers rather than specialist child minders. Agencies cannot guarantee the same care worker even on a session by session basis. In place of the expertise and real compassion of child minders we know and trust, we are expected to hand our exceptionally vulnerable children to perfect strangers week in and week out or go without the time our families need.

Aside from the obvious trauma in this dilemma, what are we teaching our children? Parents of typical children would not be expected to do this. In fact, they are soundly warned against it. Indeed, a number of child protection issues are raised: our specialist child minders know our children and are in a better position to spot abuse if it were occurring than an agency worker meeting a child for the first (and perhaps only) time. Most of our children – my son included – require nappy changing. How does one explain to a child who has no language and poor reasoning skills that it is acceptable for one stranger to undress him in a public toilet and yet it would be abuse should another do so?

This kind of “care” is making our children more vulnerable to abuse than they already are – a study from John Moores University in Liverpool, published in the Lancet in July 2012, has indicated that disabled children are at a four times greater risk of abuse than their typically developing counterparts. Having met with the council leader, it is clear that she, too, finds this situation unacceptable.The human rights of our children would be infringed should agency carers be the only option. They too, have a right to dignity and privacy. We all have a right to a family life and this is compromised each time we have to share details of our child’s medical condition, social behaviour and home set up and relationships with perfect or near strangers.

In the light of discovering that consultants within CHAD are, we believe, being paid £500 a day and that councillors are set to receive a £500 iPad each, the cuts to our provision seem exceptionally cruel and short-sighted in the extreme. There will be knock on costs in terms of lost employment of both parents and specialist child minders and in demand on health services. Our children’s safety and security are at stake – these measures have the potential to push families into poverty and put unbearable strain upon them that, no doubt, will see more disabled children placed in care…

Then on top of this crusade the Pwdin got ill. He had a temperature of 41.5 C and a nasty, non blanching rash. The GP called an ambulance and we spent most of the weekend in hospital with him. My huge thanks to the doctors and nurses who took such good care of the precious Pwd.

Meningitis was ruled out but a possible heart murmur detected. We will have to wait until he’s in tip top shape again to have that investigated as it may well be the result of this nasty virus he’s contracted. Today, he is back on pretty good form – he’s not quite right yet but he’s really getting there; he only has the energy of about three four year olds as opposed to the usual dozen.

Poor Pwd in hospital

Poor Pwd in hospital

poorly pwd 3

Back home but still poorly

catalogue

Feeling much better – the new catalogue helps

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5 comments on “Why I’ve Not Had Time to Pick My Nose

  1. Kristen
    22 January, 2013

    ((HUGS)) Shelby came down with Fifth’s Disease which, while not life threatening or even altering is NOT pretty to look at. Here in the US we are also dealing with all kinds of cuts. Our family does not even qualify for any type of respite care simply because my husband has a job…sigh.

    • Autismum
      22 January, 2013

      Poor thing! I hope the little one is back on form!
      My DH is Irish and one of the reasons we stayed in Wales and didn’t head to Dublin is because of the health service and provision. I know how lucky we are to have these services but they are worthless if taking them up puts a child at risk.

  2. lilady
    23 January, 2013

    If anyone is able to push the government into sparing CHAD program cuts and to expand in-home respite services, it will be you Autismum. When you are able to set up a meeting with the bureaucrats, make certain you send a follow-up letter…ostensibly to thank those bureaucrats…but also to put in writing, each and every action they promise to take. Yes, they will know what your “game plan” is. They will also know that you mean business.

    Okay, “Dr.” lilady is ready to impart her *expertise* about the Pwd’s illness. He did have a high fever and then experienced a non-blanching flush rash. If Pwd had a high fever, before the appearance of a rash 2-4 days later, it *might be* Roseola Infantum a.k.a “Sixth’s disease”(slide 13 on this link):

    http://children.webmd.com/ss/slideshow-common-childhood-skin-problems#

    http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001963/

    I wouldn’t worry too much about a possible heart murmur…especially since it is a tentative diagnosis, detected when he is older, when he was quite feverish and feeling poorly…and when he was somewhat dehydrated from the fever and refusal of liquids.

    Hugs and kisses to you and to Pwd.

  3. Pingback: What This is All About « The CWTCh Network

  4. Pingback: Ryan’s Story « Autismum

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This entry was posted on 22 January, 2013 by in Autism, disability, discrimination, ignorance, media, Pwd, stupidity and tagged .

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