July 05, 2016
Action for M.E. volunteer Catherine Hale attended a roundtable discussion yesterday where she questioned Alistair Burt, Minister for Social Care. The Independent Living Strategy Group, chaired by Baroness Jane Campbell, hosted the event.
The main subject of discussion was the Care Act, and the extent to which its implementation met the policy intent of putting choice and control in the hands of disabled people.
Catherine Hale, our volunteer Policy and Research Officer, brought up the findings from our recent Close to collapse report. She asked:
"Recent research revealed how people with M.E. have great difficulty accessing the support they need. One survey which used Care Act eligibility criteria found that 97% had difficulty with two or more activities of daily living, but only 6% were receiving a care package. And those who did have a care package for personal care often had a one-size-fits-all service (a reablement service) which reduced their choice and control and exacerbated their symptoms. What is the minister doing to address the needs of people with chronic illnesses like M.E. in which impairment is often invisible and fluctuating, who are currently failed by the social care assessment system?"
The minister replied that the Care Act makes provision for the assessment of needs that may vary over time and that a full and accurate assessment must take into account fluctuating symptoms and support needs, and social care professionals are trained to take these fluctuations into account. He added that he was keen to hear evidence of good practice in social care support for people with M.E. which could be shared with all local authorities.
The event also considered emerging findings from an In Control survey of how local authorities are performing in relation to the Act - if you have not yet shared your experience about this, the survey is still open and people affected by M.E. are invited to take part.