As we enter party conference season, LDE Co-Founder Gary Bourlet lays out his thoughts about what people with learning disabilities want to see from social care.

LDE will be talking to politicians about social care at Liberal Democrat, Labour and Conservative party conferences over the next month.

What do people with learning disabilities want from social care and the people who provide it?

The most important thing about social care is that it is person centred, that people are listened to – it is their life, so it must be their choice.  The person who is to receive the care, their family and friends should work together, remembering it’s the person with learning disability’s plan.  There should be short, mid & long term goals set within the plan.  Everyone involved must listen to each other.  There should be real choices – how, when & by whom care is provided.

A plan of care should be built around what the person themselves wants and needs.  The resources to provide this care should be identified – including who will give the support, where it will be given and what the care will look like.  It must take account of beliefs, culture, personal preferences and relationship choices.  If a person doesn’t speak English then an interpreter must be used.  If a sign language interpreter is needed, then that should be provided too.  A person’s dietary needs and choices must be catered for.

When a person receives social care (in any form), their happiness is very important.  If someone is not happy, then there is something wrong.  People must be treated with dignity, respect and compassion – treated as human beings and not lower class citizens.  Personal privacy must be given wherever possible.  Everyone has hopes and dreams, people with learning disabilities are no different – their hopes and dreams should not be shattered, they should be respected and made part of their care plan.

Social care is not just care homes; it’s not about bricks and mortar.  Not everyone wants to live in a care home.  We need to see people living in their own community with their families and friends nearby, being supported in the best way for them.   Care must be properly funded, so that people can have a real choice, they should not be prevented from having the care they want because of the price tag.

What does good social care look like?

Good social care should be safe but not overprotective. People with learning disabilities should be living where they want, safe from avoidable harm but with the freedom to take risks.  Being safe does not equal being happy.  People have the right to a social life, being able to have the interactions they want.  If someone wants to stay up late and go clubbing, then that should be supported.  Being able to make their own choices in their daily life is really important.

Care must be homely.  If it is a care home, it should not be like a medical facility or institution.  People’s additional care needs must be met in the way and place that a person wants – with their families and friends able to contribute to the planning.  People want care to be friendly, this will contribute to a person’s happiness.

Care needs to take account of both physical and mental health, with people getting the right treatment and medications.  We need to reduce the number of hospital admissions and reduce the length of stays in hospital.  The NHS should not be picking up the shortfalls of the social care system.

Care must be reviewed regularly to see if the person wants any changes made.  Changes should be made promptly when either wanted or needed.   If someone needs to move to a different place or different kind of care, then their care plan must enable this.

The most important thing is to improve the quality of care in the community as this is where people with learning disabilities should be living.  People with learning disabilities must have a first class service where money is no object. People must come before profit.

How can we get the social care we want?

Social care needs to be properly funded.  Services should not be cut, leaving people unsupported and vulnerable.

An excellent service requires excellent staff.  Staff at all levels must be properly qualified and trained to do their jobs to the highest standards.  They must be paid well and have opportunities for personal and career development.  There needs to be a good support structure for staff.  No more over working and underpaying staff.

Staff, systems and procedures must be carefully monitored by independent people.  The person who is using the service must be able to contribute to monitoring and reviews –their opinions are vital.  Families and friends must be listened to – they know the person best.  Feedback and complaints should be dealt with openly and quickly.

We can only achieve the best social care if everyone works together.  The NHS, Social Services, Local Authorities, learning disability charities, self-advocates, self-advocacy organisations and other advocacy groups need to talk to and listen to people with learning disabilities and autism, their families and their friends in order to develop the best social care system.  Any profits should be ploughed back into social care.

We must make England proud, by being the best place for people with learning disabilities to live.