Saturday, 3 September 2011

A #Specialsaturday Post - My Special Needs Child's Greatest Achievement

With exquisite timing, a story was tweeted about the chaos caused by local authorities arguing over funding responsibilities when a disabled person moves to a different area - so called "ordinary residence." I clicked on the link &, to my surprise it was our story. I had emailed various disability organisations about the funding wrangle over responsibility for Chrissy's care so assume it must have come from one of them.

The story, Ordinary-residence; extraordinary-mess
was posted by Graham Faulkner, Chief Executive, Epilepsy Society, Vice Chairman Voluntary Organisations Disability Group. It highlights discrimination against thousands of disabled people who can't move where they need or want to due to funding rows between local authorities. It also links in perfectly with this week's #Specialsaturday theme. One of my special needs child's greatest achievements is raising awareness of failings in the system, sadly by experiencing so many of them herself.

It wasn't simply a case of a wrangle between two local authorities - CHC (continuing healthcare) was also involved & argued that Chrissy's predominant need was social care, not health. Their nurse assessor confided that they'd used 'outdated assessment criteria designed to assess people with dementia.' I am awaiting a response to a complaint I've made about this issue.

Because Chrissy was moved to a 3rd local authority after a sudden, heartless eviction from a residential home, the dispute became even more complicated. It led to delays in Chrissy getting effective care, support & medical treatment, & endless meetings with commissioners, care managers & healthcare professionals. I took legal action three times & went to the local newspaper to resolve the stalemate situations Chrissy was put in. Meanwhile, Chrissy's mental health was deteriorating. She had made herself bald on one side by ripping out chunks of her hair, & spent hours self-injuring, hitting out at others, & screaming for hours. Increasing numbers of carers were being put in to manage her behaviour but Chrissy's quality of life was shit.

Last year, we made a complaint to the three authorities involved & eventually got a joint response from two blaming the third authority for it all. We are awaiting more responses - about the CHC assessment & from the third local authority - before we can proceed further.

Legal action settled the dispute temporarily in order for Chrissy to be funded at an assessment & treatment unit but it hasn't been settled long-term as the funding agreement was 'without prejudice.' The dispute continues with no end in sight as an important meeting to discuss Chrissy's future looms.

This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the globe. Please join the cause by joining the facebook page - Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday Reading and following the Special Saturday Blog -">

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