12.03.19

In our latest guest blog Sarah White, Head of Public Policy and Campaigns at Sense talks about the charities ‘When I’m Gone’ campaign.

What will happen when I’m gone?  This is a question that we are all likely to think about at some stage in our lives, but what if you are the primary carer for your disabled child?

At Sense, a national disability charity, we asked the people who we support and their families what their biggest concern for the future was.  Resoundingly, families came back to us saying they were worried about what would happen when they could no longer provide the care and support their loved one needs, with many already in that situation due their own failing health or increasing age.

Parents and family members provide support day-in and day-out, and year after year, often with limited opportunities to take a break.  They also often become experts in their loves one’s care co-ordinating support and advocating on their behalf.

Although many disabled people with complex needs will live independently in residential services or in supported housing, many others will remain living in the family home well in to adulthood.  As a result, family carers often continue to provide a high-level of support for their loved ones as they themselves enter older age.

Our research found that 1.7 million disabled people are supported by their friends and families, but that 75% have no plan in place for the day that support is no longer available.  Alongside this, a third of local authorities are unaware of how many disabled adults in their area are currently being cared for by family and friends at home, with only a quarter routinely providing support to make contingency plans for the future.

For the past year, we have been running our ‘When I’m Gone’ campaign, calling for disabled people and their families to have greater support to plan for the future.  We know that there are many reasons why families don’t have plans in place including time pressures, emotional impact, lack of services available and with many just not knowing where to start.

Through our campaign, we have been calling for greater support for families now and to make plans, but also for greater investment in the social care system so that high-quality specialist services are available to meet the needs of disabled people and their families.   We were delighted that over 36,000 people signed our petition to show support for the campaign.

Alongside our campaign, we also developed and published a toolkit for families to help them start the process of making a plan.  Decisions to Make, Steps to Take introduces the topic areas that families might want to consider when planning for the future but also includes person-centred planning tools for families to ensure that the disabled person is at the centre of all conversations and decisions.

To access the Decisions to make, steps to take toolkit click here, this toolkit is specifically aimed at disabled people and their families, to guide them through the process of making choices about the future. You can also sign up for more information about the campaign here.