‘When I’m gone’ a new report from the national charity Sense

Sense is a national charity which supports people with complex communication needs and their families.  This report, published in February, focusses on concerns around planning appropriate care for people with disabilities who are living with their families.  Families and disabled people themselves have profound fears for the future and the report looks at barriers to making long term plans for housing, care and lifestyle.

Sense estimates that there are 1.7 million disabled adults being cared for at home by family and friends.  The CEO of Sense states ‘We know that as carers of disabled adults become older, their caring role becomes harder, they may lack the energy they once had to deal with the day-to-day tasks and responsibilities’ of caring.   75% of families in the study had not put a plan in place for when they were no longer able to care.  The report also states that 81% of disabled people themselves were worried about how they would manage their day-to-day life without the support of family and friends.

It is acknowledged that support which is set up in a crisis is both expensive for services and traumatic for the person with care needs, so investing in planning is extremely important.  Yet families face many barriers in doing this.  These are seen as

  • Having the time, energy and capacity when day-to-day caring can be so full on
  • Problems in understanding complex and changing health and social care structures and processes and navigating services
  • Lack of information on available housing and support which will meet the needs of people with disabilities
  • Problems with assessments being conducted by people without sufficient understanding of the person with care needs and failure to match with services that will meet those needs.

One carer said ‘It doesn’t feel like we are asking for much.  We want others to see her as a whole person.  Most of us don’t want to just exist, but for us to have choices’.

The report also comes up with a number of recommendations for improvements in services which will help families to plan and help people with disabilities to continue to lead a good life once they begin more independent living.

This report highlights the need for carers to receive good quality information, advice and support in making sustainable choices in care planning for their loved one.  The services delivered by carers organisations such as  Carers Leeds, backed up with services provided by health, social care and third sector providers, can make a huge difference to families looking to the future.