“It’s very stressful. I find myself hoping she passes away before me. No parent should feel like this.” These words were spoken by Mark, who cares for his disabled daughter, who has complex needs. Mark lives with the fear and worry that his daughter’s care and support needs are so complex, and that his local social services are under such pressures, that should he not be able to support his daughter, then no one would.
He is not alone. In fact, according to research by Sense, over two thirds of families caring for disabled adults with complex needs live in fear of what will happen to their loved one when they are no longer able to provide support.
Data we collected showed that only 1 in 4 councils are able to support disabled people and their carers to make contingency plans for the future.
More worryingly, we don’t know the full picture as local authorities aren’t under any obligation to collect figures for numbers of people living at home with their families- indeed only 1 in 3 local authorities know how many people live with families at home in their area.
After a lifetime of caring, no one should be left forgotten about
We believe that after a lifetime of caring, no one should be left forgotten about and need support now. Unfortunately, the current oversubscribed and underfunded system is not able to offer the high-quality, tailored support that they need.
This goes some way to explain why 95% of carers we surveyed had little to no trust in local authorities to provide adequate support to their loved one.
Planning for the future, and thinking about who will care for your loved one when you cannot is a daunting prospect.
Councils are struggling to provide the support to make these plans which can give carers the peace of mind they deserve. As such, it should not surprise us that 75% of families caring for a disabled loved one have not put a long-term plan in place for when they can no longer provide that care.
Families told us that they would like regular input to help them plan for the future, but at a pace and at times that work for them.
It is unacceptable for families, who have spent a lifetime caring, to have this high level of anxiety and we cannot allow it to continue.
Six steps to tackling the growing crisis for families supporting disabled people
We believe that there are some key steps that should be taken to address and effectively tackle this issue, and ensure that people with complex needs and their families can look to the future with a sense of security, rather than fear and anxiety.
1. Create a duty to ensure that plans have been put in place.
There should be a duty on local authorities to ensure that all carers of disabled people aged 25 and over, have long-term contingency plans in place for their housing, care and lifestyle. 82 per cent of the carers we surveyed would support this proposed duty on local authorities.
2. Support families to make plans for the future.
Local authorities should provide specific and proactive support to disabled people and their families to develop long-term plans. Plans should be far-reaching and holistic, and include options for long-term advocacy and support.
3. Provide clear information about how the system works.
Local authorities, providers and voluntary sector organisations should do more to provide clear information on what services are available to support disabled people and their families in the short and long-term, and how to access them. This could include disseminating Sense’s toolkit for families; Decisions to make, steps to take.
4. Ensure quality specialist services are available.
Local authorities and providers should work together to ensure that there are sufficient quality specialist services to meet local needs and provide choice for families. This should include staff with the right skills to provide support to people with complex communication needs.
5. Provide enough funding for local areas.
Central government should ensure that local authorities are adequately funded – not just to meet immediate care needs, but to enable the delivery of new and innovative models of care, such as supported housing. Such funding needs to be long-term and sustainable.
6. Provide more support to help families now.
Ensure that families are supported in their caring responsibilities while they are still able to provide support, by the provision of adequate support within the home, and access to short breaks.
Sense’s research reveals level of concern among families and disabled people
Our research uncovered many worrying findings, and shed light on the sheer level of worry and difficulty that so many disabled people and their families live with.
These concerns have been intensified by a perceived lack of appropriate or quality support services, such as health, social care, housing, welfare and education. There is a risk that disabled adults are only placed in a crisis situation without suitable care and support in place
To avoid further uncertainly and worry, far higher levels of investment in social care is needed. But it is not just about resources. Families and disabled adults should be placed at the centre so that government and local authorities work alongside them to look for creative and innovative solutions to meet their needs.
We rely on families to be on the front line of care. We are under an obligation to resolve this now, so that families have peace of mind for the future.
To find out more about Sense’s new campaign, to read the full report or download their new toolkit aimed at helping disabled adults and families plan support and care for the future, please visit www.sense.org.uk/helpfamiliesplan