When I first took my disabled daughter to Nascot Lawn Respite Centre – the only NHS overnight and daycare centre in Hertfordshire – I never imagined it would become one of the most important places in our lives. So when the service was threatened by closure last year, I didn’t hesitate to lead the legal challenge to reverse the decision.
Beating the odds and winning two judicial reviews meant the parents from Nascot Lawn raised the importance of short breaks and social care funding for all disabled children to a national level. But now, with only three staff members left, the gem of Hertfordshire is on the brink of extinction and my daughter’s future uncertain.
My name’s Ellen Watson. I’m 22 years old. I’m a student at the University of Sheffield. I recently attended parliament where I spoke about loneliness and disability. I shared my experience of being deaf and losing my sight, and the effect it has on young disabled people transitioning from childhood to adulthood.
Many disabled people rely on the support of their families. Family members play a key role in their care and often become experts. However, there is much concern over what happens as those family carers get older. What happens when family carers are no longer able to support their loved ones?
Today sees the publication of a report by the Equality and Human Rights Commission (EHRC), following their inquiry into the availability of housing for disabled people. It highlights a ‘housing crisis’ caused by the lack of accessible and affordable homes, delays in installing home adaptations, and a general lack of support to enable disabled people to live independently.
The impacts of this can be wide ranging and affect independence, employment, relationships, health and social care needs, and more. Many of the findings in this report echo the experiences of families we spoke to as part of the research by Sense for our When I’m Gone campaign.
There was a new appointment in Government last week, an important one for disabled people with complex needs.
James Brokenshire became the Secretary of State for Housing, Communities and Local Government. We’re calling on him to ensure disabled people with complex needs have appropriate and timely arrangements for their future care in place, and to help provide the peace of mind that families need.
Describing himself as having “local government… in the blood”, Mr Brokenshire said he looked forward to working with councils to deliver quality public services and build strong integrated communities.
“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.
As someone with dual sensory loss, I was recently asked to give evidence to the Work and Pension’s Committee on applying for Employment and Support Allowance (ESA) and Personal Independence Payment (PIP). I wanted to address the training of assessors and alternative ways of applying.
Last week, the Government announced its ambitions and plans to get one million disabled people into work over the next ten years. Sense cautiously welcomed this announcement knowing that this will only be successful if it has a meaningful and positive outcome for disabled people. ‘Getting people in to work’ is more than just finding a job for someone; it’s about finding the right job and disabled people getting the support they need to find work and stay in work. For this to be realised, it’s crucial that employers and job centre staff have positive attitudes and understanding of what disabled people can and want to achieve in work.