Norman Lamb

Minister of State – Care and Support

Department of Health

Richmond House

79 Whitehall

London SW1A 2NS

Date: 27^th June 2014

Dear Norman

                I am writing to you about the new Care Act and how it unfairly disadvantages people with autism - people who are often some of the most vulnerable in our society, and at risk of abuse, neglect and loneliness. An estimated 63% of adults with autism (or parents and carers responding on their behalf) already do not receive the support they need from social services; further reductions in levels of support will only serve to make a bad situation far worse.

                As you know, the new Act creates uniform eligibility criteria against which people are assessed in order to qualify for support. However, this uniformity fails to take account of the diverse range of needs and difficulties faced by individuals. The blanket assessment approach means there is a very real risk that the needs of people with autism will not even be recognised, let alone met.

                The Act defines support in terms of needing assistance to carry out day to day tasks, such as washing, feeding and eating. Many people with autism are able to carry out these tasks only after being prompted or guided to do so. However, the National Autistic Society (NAS) warn that the new legislation fails to accommodate prompting and guidance when peoples’ needs are assessed. If unprompted to do these tasks, many people with autism may go unwashed, undressed and unfed. NAS’s research indicates that 86% of adults with autism need prompting or guidance to wash, whilst 70% have missed meals in the past because they’ve not been prompted and 69% have not got dressed. I think failing to ensure the prompts and guidance required constitutes neglect, and I hope the Government will look again at the assessment procedures in order to ensure those with autism are supported to carry out essential activities. This would also improve the efficiency of the social care provided and allow for better, targeted support to those who need it.

                The Care Act 2014 also requires people to complete a self-assessment of their needs. This disadvantages those with autism, as they can often struggle to define their own needs. In turn this may result in support needs not being properly identified. I am also deeply concerned that assessors are not required to have any expertise in autism. I am sure you will be aware that autism is a complex disorder, with a wide and varied spectrum. I am, therefore, asking that the Department of Health requires assessments to be carried out by specialists who have the appropriate levels of skill and knowledge to deal with the complex needs of people with autism. This will facilitate correct assessment from the outset and potentially reduce the number of appeals and time spent on renegotiating assessments, thereby saving money, ensuring better standards of care and protecting people from the distress of having their needs incorrectly assessed.

                Finally, I am worried about how the new Act focuses assessment on an individual’s ability to maintain personal relationships, but pays scant regard to the formation and development of these relationships in the first place. According to a survey done by the National Autistic Society, 36% of people with autism do not leave the house most days, and 66% feel depressed because of loneliness. Without targeted support and guidance, many people with autism struggle to form personal relationships with others. This has implications for their social isolation and the likelihood that problems such as not washing, dressing or feeding will get picked up. If the eligibility criteria set out in the Care Act 2014 included the need to form and develop relationships, more people with autism would receive the special support they need. This in turn would reduce the burden on other social services, as they would be less likely to have to pick up the pieces arising from social isolation.

I hope you will agree that people with autism have the right to adequate levels of support, so they can stay safe and retain as much as independence as possible. I look forward to your response.

Yours sincerely,