I started this petition to Helen Whately, Minister for Care.
After my recent post on social media and speaking through our charity, it was apparent that thousands of parents’ biggest worry was the question of what will happen to our autistic children and adults when we are no longer around. Parents all need peace of mind that practical and emotional support will be available when they are not there to help.
Freedom of information data reveals that only one in four councils are able to support disabled people and their carers to make contingency plans for future care options. Only one in three local authorities are aware of how many disabled adults are currently being cared for by family and friends at home.
Parents and adults with a disability are feeling the pressure, and better planning and funding is urgently needed for future care needs so that the right support is in place at the right time.
We are calling upon the government to ensure social care is adequately funded to meet the ever-growing needs, especially in these uncertain times of families and disabled adults.
One parent shares: ‘The reality is unless you are financially prepared and legally savvy, it is a postcode lottery. No one seems to want to take responsibility for it. Not enough work is being done to identify vulnerable families. There is no safety net. It is essential that this changes.
‘I try not to think about it at the moment because I was having sleepless nights over it, but it is something I will have to face and it scares me to death.’
‘This is a major cause of anxiety to me. As a single mother, it’s really difficult. A friend said don’t think too much and, although that’s hard and sometimes impractical, I think we have to not get caught up in forward-thinking, as it’s stopping us enjoying now.’
As a parent of two autistic adults, this is a constant worry, especially during these uncertain times. We all need to have peace of mind. Please sign this petition to make our voices heard. Thank you.
Dr Anna Kennedy OBE is an educator who has worked to provide improved education and other facilities for children with autism spectrum disorders.