autismawarenessgapslivedexperience

I want to share what is happening now – and why things still need to get better.
Everything should be more easy read including contracts and tendency agreement and rules!
My support hours cut – and why I need more
I used to have 12 hours of support a weekall my life, split nicely with plenty of time for fun and activities with and without support. Now it has been changed to just 15 hours total over 5 days – sometimes only 3 or 4 hours in a week is better for time to deal with things and to get a routine going. This is not enough it needs bulking. No real care included first month as I can see lots of practical things needs sorting first and then hours cut is not right! For everything in my care plan. I need some social hours and flexible and I will need more help with my physical needs as I live in pain.

Since I became a full-time wheelchair user, my life has changed completely. I use to dance get out but still had 12 hours a week to cover careplan needs. My health needs are much greater, and I have far more to manage. This limited support leaves me struggling – I really need to fight for more hours so every part of my care plan is covered properly.

Meeting new people is also very hard for me. I have autism and a learning disability – new faces and changes feel overwhelming and stressful. Now first 3 hours be getting to no 1 person then another face and so on. Asking me no plan to the week won’t work out well at all I have more experience of the system than people realized. If I say it won’t work it won’t. Plus not my social worker told me but a long text, o yes and they not told me what time they coming. I still need to see a GP to get my bloods and blood pressure checked as still very high and meds making me drowsy new ones! Still.

When parents are gone – money and support fail

My mum died and left me some money, from her house I had to sell pay her small debt and it was disregard for her care and care home, which helped pay for my care for a while and all equipment I needed when left in a wheelchair with no support or rehabilitation because keep moving private rented places till homeless. But that money does not last forever! Once it ran out, my support crumbled, my health was neglected, and I was left to cope alone – which led to me becoming homeless. I lived with a son mum helped me raise, with his own additional needs not addressed well!

This is wrong. Parents and families need to know that money left behind will not pay for care forever. And most importantly: people with disabilities should get the RIGHT SUPPORT whether they have money or not. Our voices must be heard on this – the system needs to change so no one is left stranded when their family is gone. Even cousins Aunties and family friend who even hold my LPOA the friend died. Family members either had autism or and learning disabilities and same health conditions and none lived to passed 62 years old with these health and hidden disabilities.
Housing and support mess

I moved into a flat for over 55s – safe with a warden and cameras, but run like private renting. I have to sort everything out myself: addresses, GP, insurance, bills, repairs. With no proper support, this is impossible.

It got worse:

– My washing machine was plumbed in wrong, so they cut off all my water – I have no running water.
– My carpet is damaged, it’s soaking wet physical I can do nothing I’m cold at night, and no one fixes things properly. I very lonely.
– Support was promised to start Monday – changed to Tuesday, with people I’ve never met. I only got 3 hours notice to fix emergencies first day! Practical no plan.
– The company says something different than social services – I never saw my real care plan yet and no communication from my social worker just a long confusing text from a support worker I thought was going to support me I got to no after the meeting with the social worker last I heard it will start Monday.
– Family tried but don’t understand learning disabilities or autism, so help didn’t work. We clash in everything. He was forced to help out 3 weeks and no way it was not going to work he agreed as he’s has vunrubile needs too!  And rocks are family.



Why this hits me so hard

I’m over 55:

– Learning disability from childhood
– Autism diagnosed later
– Full-time wheelchair user, constant pain, many health conditions later in life I use to be a dancer able to do some jobs well except Cook and multi task with my executive functioning, and I struggle to read and write thanks to phones I speak it in and AI orders it out till it reads well!  But my understanding is no good so easy read a must even with housing contracts. It seems there’s lots of rules and I can not see them with my catracts let alone understand it.
– Been isolated far too long nearly 2 years in my home even home bound where GP and district nurses tried hard in Wales.  So my campaigning helps Mencap!  And government in Wales they amited mistake the NHS and the social services we still trying to get answers to my case for the government to deal with for adults on the learning disability register to move boarders with them and back!

This is why I’m getting NHS trauma counselling  now in England I do not have mental health – all this neglect, losing mum, being homeless, and fighting alone has been terrible for my mental health.
When my children was young social worker said I more like a great brother or sister to my children rest of needs was met by family and social services support.a



What MUST change

Oliver’s Mandatory Training should be required for everyone in health, social care, and housing. Too many workers, social workers, and companies do not understand learning disabilities or autism.  Or provide easy read nothing. Som GPS same. Trying to register with no ID and no bills with this address.

I am smart – but I need steady, reliable support to be independent. A good routine and emotional support with support in all areas I need and my physical health needs declining I campaign with Mencap across England and Wales to fix these broken rules.

I still need to find a GP who understands learning disabilities – very hard to find. I also risk debt because rent and bills are due before support is set up. Since moving I was due to have my blood pressure calculated and medication side effects, because they changed 2 pills and I think the old ones and no good diet they took feel my potassium was very low still is with how I feel tired all the time and worn out mentally and physically.



💡 Remember the learning disability communities!
We need fair support hours, people who understand us, and care that lasts – with or without family money.

By Kereena