As CEO of Sense, a crucial part of my role is talking to decision-makers
about the issues that affect disabled people’s lives, with evidence that is
rooted in the views and experiences of families and individuals that we
On 30th September I was honoured to give evidence to MPs at the Public Accounts Committee in Parliament, as part of their inquiry into Support for Children with Special Educational Needs and Disabilities (SEND). I was invited as CEO of Sense and in my role as Vice-Chair of the Disabled Children’s Partnership (DCP), a coalition we’re part of that campaigns for improved health and social care for disabled children and their families. This was a unique opportunity to share some of the challenges experienced by children with SEND when trying to access the right support as well as some of our suggestions for improving outcomes.
Sense has a proud record of campaigning to make sure that society addresses the needs of the people we support. This can mean many things but has included supporting disabled people and their families to meet with MPs to share their experiences campaigning on social care and influencing the development of legislation (e.g. the Children and Families Act or Care Act) to ensure that it meets the needs of people who we serve.
There are many things we could campaign on – and we always want to hear people’s ideas and
feedback. The recent consultation with membership about Sense’s strategy for
the next three years also gave us a strong steer.
As it’s been Carers Week this week, we’ve
been recognising the 8.8 million unpaid carers across the UK who provide
amazing support to their loved ones day-in and day-out, often without a break.
Caring, for many, is a full-time role which can be exhausting and emotional,
particularly as carers get older.
As part of our When I’m Gone
campaign we met with a number of carers who shared their fears and concerns
about getting older and what that will mean for their loved ones. As of the
last census in 2011, it was found that there were around 2 million carers in
England and Wales aged 50-64 and 1.3 million aged 60 and over. As the national
figure for the amount of carers has increased, we can safely assume that the
number of older carers has increased too and the need to support them will
continue to grow.
Amongst the noise of Presidential visits, resigning Prime
Ministers and the ongoing drama of Brexit, there is one issue that has quietly
returned to the political agenda.
bill of BBC Panorama programmes has drawn public attention to the crisis in
care. Through special access to the social care teams at Somerset Council, the
BBC has shone a light on the older and disabled people, and their families, facing
a confusing social care system and struggling to cope without the right
support. Both programmes
have shown the impact of the devastating funding cuts to local authority social
care budgets. Across England local councils have faced over £7 billion worth of
cuts to adult social care since 2010. As a result, social workers,
commissioners and directors of adult social care are faced with dwindling
resources for packages of care which means impossible decisions about who can
get the support they need.
How Sense staff at a supported living service in Sheffield helped Martin to live a more independent life.
first met Martin after a referral from the local authority. Martin had been
living in a nursing home and staff were concerned that he was becoming
increasingly withdrawn and unwilling to interact with others. The home wasn’t
able to provide activities that Martin could participate in and there was a
general lack of routine which left him feeling anxious and unsettled.
Five-year-old Annie has been on a difficult journey that families of a child with complex disabilities will recognise. But in some ways, as her parents Ali and Michael acknowledge, she has been fortunate. They were able to get specialist help for her from Sense and this has made a huge difference to her life.
Sense wants all families with a child with complex disabilities to receive this level of support, and our new strategy – including the development of services and our campaigning work – aims to drive this forward.
Yesterday the Secretary of State for Work and Pensions, Amber Rudd, announced that the Department are looking to combine the assessment for Personal Independence Payment (PIP) and the Work Capability Assessment (WCA) that takes place under Employment and Support Allowance (ESA) and Universal Credit into one.
At Sense, we believe everyone with complex disabilities should be able to access good quality and person-centered health and social care services. An essential part of this is ensuring that health and care staff know how to support people with complex needs when they meet or care for them.
There are really simple steps that can make health and social care accessible, such as allowing more time for someone to understand what’s been said to them, or identifying that someone might have a learning disability or autism and considering how best to support them to feel safe and communicate.
It’s just over two weeks now since NHS England published the NHS Long Term Plan. Setting out the vision for the next 10 years of the NHS, the plan was heralded by many as the solution to the challenges facing the NHS. As the dust is now settling following the launch of the plan it’s time to review it in more detail; what does it actually mean for disabled people with complex needs and their families?