'Who will look after my autistic sons when I'm no longer around?’
By ITV News Digital Content Producer Katherine Clementine
Writing a will to ensure your loved ones are looked after when you’re gone is something most people don’t even consider until late in life.
But many adults up and down the UK – who rely usually on unpaid carers – could see their whole world turned upside down if a plan isn’t in place for them.
And the fear of what might happen to their loved one can be an all-consuming worry for those who care for adults with Special Educational Needs or autism, especially during the coronavirus pandemic.
One such carer is Anna Kennedy, who wants a register in place to help ease worries of carers and has started a petition to social care minister Helen Whately.
The mum-of-two and prominent autism campaigner told ITV News: "I reached 60 last year and it really started resonating with me and I started really worrying.
"My youngest son, Angelo, 28, is quite profoundly affected with autism - he's got sensory issues, he doesn't sleep much and he's got no sense of danger... He wouldn't be able to tell if he was being treated well - there are some really fantastic care homes out there, but there are some not so nice places too.
"And I'm thinking, 'Who's going to look after him? Who's going to know his needs?'
"In these uncertain times, it's brought it to the forefront as well with people worrying about who's going to look after their son or daughter in case they do get Covid-19 and something does happen to them.
"Sometimes, you can't rely on extended family to look out for them."
What if there is no plan in place for an adult with care needs?
Charity Sense estimates that there are 1.7 million disabled adults in the UK being cared for by family or friends. Their research has shown that one-third of councils do not know how many disabled people live in their area who rely on friends and family for their care and support.
GPs often don't register the details of carers, especially if they're unpaid, Ms Kennedy said. "They tend to be the ones who are forgotten about and they're the backbone of society in this country." If these unsung, often unpaid carers, pass away without a plan in place, the disabled adult would be placed under the care of social services, which can exacerbate the grieving process. When severely autistic people suffer from grief, Ms Kennedy said: "Their behaviour becomes classified as 'challenging behaviour' because they're distressed.
"Their parents are no longer there, they're in a new place, they could possibly be sectioned or sent off to some of these horrendous assessment and treatment units and that's the nightmare - that is what parents are worried about."
What changes are needed according to campaigners?
Sense Chief Executive, Richard Kramer, is calling for more recognition on the pressure on the 'hidden workforce' of family carers, and the invaluable role they play in society.
He said: "We need a commitment from government to provide better identification and support of unpaid carers, as well as investment in the social care system, to ensure the right services and support are available for disabled people and their families. "After a lifetime of caring, no parent or disabled adult should be left neglected and living in fear about the future. But unfortunately, we know this is the case for families up and down the country."
Social care cut for 210,000 older people during pandemic – charity
One sixth of unpaid carers spending 40 more hours a week caring due to pandemic
Anna Kennedy hopes social care minister Helen Whately sees her petition to start a discussion about parents and carer's concerns.
"There needs to be some sort of register where parents can say 'I'm looking after my son and my daughter at home' like I am.
"Some parents don't even know that you can have a community care assessment, which is something that can identify your son or your daughter's needs.
"I want them to stop and really listen, don't make it like a tick box exercise."
The Department of Health and Social Care says it is "committed" to supporting people with disabilities, autism and complex needs as well as those who care for them. A spokesperson said: “We recognise the significant challenges facing the social care sector and have made £4.6 billion available to local authorities so they can address pressures on local services caused by the pandemic, including in adult social care. “We continue to work closely with carers organisations to further support carers during this outbreak, including funding to extend Carers UK’s helpline opening times so unpaid carers are able to access trusted information and advice.”
What can you do to ensure a disabled adult is looked after?
Disability equality charity Scope recommends setting up a formal legal arrangement called a trust.
Some families leave money to a relative on the understanding that they will look after the disabled person. But if the relative dies, gets divorced or has large debts, they may lose control of the money. Using a will trust can help to look after a disabled relative in the future so that it does not affect their benefits. If your loved one is vulnerable or lacks capacity, a will trust can also help protect them from the risk of financial abuse and support them if they need someone to manage their money.
For more information on trusts, visit Scope
Sense have more information on social care assessments for adults
Anna Kennedy OBE runs an autism awareness charity, for more information, click here