This is your opportunity to share your experiences both positive and challenging in the knowledge that we will listen and ensure our families lived experiences informs and influences the future landscape and opportunities for people with a learning disability and autism and their families in Essex.
The boxes below show the kind of things that our families are currently sharing with us.
To share your experiences and help make a difference click on the link at the bottom of the page. All experiences will be anonymised.
Support for your family member to live their best life
Lots of you have told us this is really important to you.
“Regular access to purposeful activity outside the home – both work related and leisure opportunities, with support. family carers need a list / directory of these activities and opportunities too, including how to access them. that support is given at a time it’s needed not a year later”
” Friendships, being employed, being active (physically and socially) working towards living independently. Learning to drive”
“Have opportunities to be part of the employed community to use excellent skills and feel valued”
Feeling confident about the future?
Following the pandemic some of you have told us how important it is for you to think about making a plan for the future.
” Going to the thinking ahead workshops with ECN has really helped us as a family to start to think about planning for a future where my son wont be reliant solely on us as his parents”
“what happens to my son when I die?”
“Most important thing is planning for the future when we as parents are unable to manage the package, our worry is any organisation that takes over may not necessarily maintain the core values of living independently”
“I wanted my daughter to be part of thinking about her future it was great to be given the I’m thinking ahead guide that was in words she could understand”
Adult social Care
We want to work with social care to ensure the best support is given. In order to do this it is important that they hear about our families experiences both positive and challenging.
“Long standing and well structured care packages do not need reviews that last three to four hours.”
“The inclusive employment service helped my daughter to get paid work. This has both reduced my worry and given my daughter a confidence boost.”
“Every review we have a different social worker, they always seem secretive, as if they are trying to catch us out”
“I want the to be seen as valuable and important by the system that is supposed to support them, not as a drain on the system, a problem to be sorted.”
Life as a carer.
We know as carers we save the UK economy billions, so how can the system work with us to help us feel valued?
“Why does the system not celebrate our loved ones lives?”
“Recognise that unpaid carers play a valuable role often having to give up their own careers in order to care for a loved one.”
“My social worker put me in touch with Time 4 You, I spoke to Stephanie and they gave me a grant to do something just for me. I now have a lovely, comfortable garden chair to enjoy this summer.”
As we have said, this is your opportunity to share your experiences both positive and challenging in the knowledge that we will listen and ensure our families lived experiences informs and influences the future landscape and opportunities for people with a learning disability and autism and their families in Essex.
By sharing your experiences we will work together with social care and health to make change happen.
Please remember that Your Voice is Our Voice.