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
Family carers consistently remind us how vital it is to have the right support so their loved ones can flourish.
“Developing friendships, securing a job, being socially and physically active, working towards independence, and learning to drive.”
“Have opportunities to be part of the employed community to use excellent skills and feel valued”
“True support is giving my loved one the freedom to thrive, not just survive.”
“I want my daughter to be given equal opportunities, to experience joy in her life, and to feel truly included in society.”
“I dream of a future where my brother can live in his own home, be active in his community, and feel valued.”
Feeling confident about the future?
Family carers often share a mix of hope and concern when thinking about the future — here are their voices.
” 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 are committed to working closely with social care to make sure families receive the best possible support. To achieve this, it’s essential that the full range of our families’ experiences — both positive and challenging — are heard and understood.
“We’ve made it our business to know the Care Act because it is relevant to us personally and it’s 24/7 for us.”
“Social workers give people the wrong information all the time.”
“The inclusive employment service helped my daughter to get paid work. This has both reduced my worry and given my daughter a confidence boost.”
“I was shocked at the difference they paid the provider after I finished the direct payment. It makes you feel undervalued.”
“Direct payments can feel like a “sausage factory,” with social workers simply providing the money without adequate support in finding PAs or carer. ”
Life as a carer.
Carers contribute immeasurably to the UK economy and society. Yet the reality they describe is often one of struggle and neglect. Their words matter — and they deserve to be heard.
“I had a care assessment… two hours… got a written report, but what’s next? Nothing reflected. Waste of money and time. Should I chase again? What is the outcome?”
“Carer assessments often don’t result in much”
“First time I had a conversation, I was told, ‘I haven’t got a magic wand.”
“I love the sessions. I love what we produce and the ‘meeting time’ is really valuable, surrounded by people who get it.”
This is your chance to share your voice — the hopes as well as the challenges — knowing that we will listen. Every voice matters, and together they shape a future where people with a learning disability, autism, and their families in Essex are supported and valued. By speaking out, you help us work alongside social care and health to make real change happen.
Remember: Your Voice is Our Voice.
