Will it be sunny in June
Without the right level of health or social care a life once filled with colour can turn into a miserable grey existence.
A spring flower that once bloomed brightly and stood tall can swiftly become a shrivelled, dull and lifeless plant. With not enough water and sunshine it is destined for the compost heap.
Yes readers, life would be that shitty if I lost my health and social care support that is my water and sunshine.
Yesterday the clouds came. Like many disabled people in the UK my Independent Living Fund is withdrawn in June. This money gets added to some from the council and I use it to employ my assistants. I’ve done this since 1993. It’s been known for over a year that the Fund was closing – yet the council leave it to the last minute to come up with a funding proposal.
Assessments are physically and mentally draining. They cause a lot of worry and need a lot of concentration. They make me ill.
I sat through a 2.5 hr assessment from Adult Social Services to gather information. A panel of people who don’t know me will then decide on whether to take over funding or cut my money.
I meet the criteria for the NHS to fund my assistance. The information will also go to them. A NHS panel will also see a letter from one of my specialists and may send someone out to ask more questions. They have 28 days to make a decision.
I’m told that they rarely fund anyone in Kent. Most of my friends with the same level / type of impairment are funded this way.
It’s left me exhausted. I worry that the complexity of my care won’t come across on paper. What if I forgot something? I keep going over and over it in my mind.
After the last care assessment (about 6 months ago) I explained my needs. The copy of what they wrote had three glaring errors. Two of them were getting the name of my medical condition wrong and saying I used oxygen when in fact the machine is a ventilator breathing for me. Based on that alone leaves me with no faith in the system.
At least I get to see what they wrote to check accuracy before the panel see it.
So I will just have to wait and see what happens.