For carers the new Care Bill has been called ‘a once in a lifetime opportunity to be truly acknowledged and valued as expert partners in care’ by Dame Philippa Russell, the Chair of the Standing Commission on Carers. On a ‘good day’ I probably believe she is right; but on an ordinary day I have doubts. These are mainly around, it’s fine to have an assessment but where will the money come from to support carers. And secondly I haven’t had many positive experiences of statutory agencies being creative and flexible enough to see us as a whole family whose needs are unlikely to fit into their tick box assessment methods.
As carers we will no longer have to provide ‘a substantial amount of care on a regular basis’ to qualify for an assessment, so more of us should qualify. The assessment will look at the impact that caring has on our lives and what we want to achieve in our own right. This means looking at whether we want to work, study or even do more socially. Finally, a joint assessment can be undertaken. It is this last point that I want to write about in more detail.
I care for both my adult daughter, Erica who has profound and multiple impairments as well as my parents, my father has dementia and my mother is physically disabled. As a professional I have worked in children’s disability services for many years and have always felt that separate assessments made very little sense. The lives of children and their parents were so interrelated that a true picture of the situation could only be described by looking at the family as a whole.
In relation to my daughter I hold a similar view. Erica lives with us and her care needs and her right to live a life with dignity and independence has a direct impact on our lives and our rights to work, retire, socialise and do things that all other adults enjoy. It is like the ‘yin’ and ‘yang’ symbol, you cannot have the yin without the yang nor the other way round. Our lives are part of a symbiotic whole (a relationship of mutual benefit). I realise that this type of interdependence is not the case for all care situations and for some carers having a separate assessment may be more appropriate.
My experience of being assessed by adult social care has not been a positive one. Our local authority has invented a tick-box assessment and support planning process. I know this is a common ‘invention’ in many authorities, as it is quick and easy to administer. My misgivings about the assessment forms are that they cannot possibly capture and describe the complexity and diversity of my daughter’s needs. So I therefore wonder how they could possible capture a more complex and interwoven picture of relationships and needs if a joint assessment was required. I fear that unless local authorities throw out their tick-box forms what we will have are parallel assessments of the cared for person and their carer, in other words two separate assessments stapled together and labelled ‘a joint assessment’ .
The situation with my parents is even more complex. They both have care needs in their own rights and receive support as individuals. My mother, due to her arthritis cannot dress herself and up until a few months ago my father would assist her to dress and undress each morning and night. They were seen as carers for each other as well as service users. As my father’s dementia progressed he became unwilling and unable to help my mother. So he is no longer seen as her carer.
My mother has received assistance with showering for a number of years and has a ‘named social worker’. When my father was assessed the local authority insisted that they have different social workers so that there would not be a ‘conflict of interests’. My mother was seen as my father’s carer by this second social worker and a service user by the first social worker. The outcome was completely muddled and disjointed assessments of their needs and support plans which did not address the issues of interdependence, risk and the need for my mother to have a break from caring.
Fortunately the care agency that go in every morning raised the alarm in terms of risk and the same social worker has now assessed them both, although separately, as service users. They currently receive separate allocations of support by the same worker, paid for by them as two separate calls, which are required to be a minimum of half an hour each. (They never need a whole hour.) I do wonder how we move to the next stage. A joint assessment recognising them both as service users as well as my mother as a carer (and me as a part-time carer and decision maker). Then a support plan which takes into account the issues of interdependence, risk, need for breaks and for us all to live with dignity.
A side issue, but one worth raising: - the new bill states that for a joint assessment to take place both the carer and the person cared for must agree. I do wonder how this will work in relation to my daughter who does not have the capacity to understand the question nor the ability to make the decision. Will we need a best interest meeting to determine my daughter’s view? If so, would my husband and I as her carers be excluded from that decision?
I do hope that the guidance to local authorities addresses some of the issues that I have touched on. I would really like to believe that joint assessments could be undertaken and that they will not just be separate assessments stapled together. For me the assessment is so important in establishing eligibility and rights to services and support. The family members I care for need good dynamic assessments in order to be supported to live meaningful lives.
I would be interested in reading and responding to comments.