By Simon Stevens
As someone with cerebral palsy, I have had assessments in one way or another for almost 40 years, some were great and some were terrible. In the context of this article, an assessment may refer to any social care, health and other gateway process to funding or services, and I am going to discuss how I think assessments in general should be organised and delivered in whatever situation.
I think it is firstly important to briefly look at the history of assessments within social care to see where the future lies. The first kind of assessments were ‘service-led’, which basically meant social services provided a specific bog- standard service and you either were eligible for it, or not. The assessment was so primitive that it was often never formalised and services were just delivered with little regard for the users.
The 1990s saw a revolution in social care assessments as we entered the era of ‘needs-led’ assessments. Service users now had their own care plan and they were individually assessed to have their specific needs met. Despite being revolutionary in its time, I slowly realised that there was a problem since what was need? What does a person actually need? Do I need a shower when I can manage with a body wash? Do women need make-up? As social services departments got their head around ‘community care’, the wonderful breakthrough of need was turning sour, as councils used need against users, using ‘equality’ to build a lowest common denominator of need that ignored the person.
In 2005 onwards, we had individual and personal budgets, that started to look at ‘outcomes-led’ assessment, which I believe we are still getting our heads around. There were always outcomes, but they were kept secret and remained the property of the funding bodies. Now users were being asked what their needs are and I think the full impact of outcome assessments have not yet been realised.
Outcomes are a very important way of defining what someone needs and therefore what solutions may be relevant to them. I would suggest there are 3 types of outcomes. The first is basic outcomes, which may be seen as hygiene outcomes, in that they are only noticed when they are not delivered and what stops people going backwards, and may include good health, a clean and tidy home, a safe place to live and so on.
The second would be activity outcomes, which are the concrete daily activity someone wishes to do like education or work, where support is provided on the basis they are doing that activity. If the activity ceases, so does the support. The final type of outcome is aspirational outcomes, the things we strive to achieve, often knowing they may never be fully achieved like to be happy and contented, to be rich, and all those big dreams that help us move forward.
What is important to understand is outcomes may be recorded in an assessment by a specific funding body or service provider but the suggested solution and who provided that may be recorded as someone else. In many cases, the person who can deliver their outcomes, especially aspirational outcomes, will be the service user themselves.
The key to any good assessment is co-production, the idea that the support plan is produced and equally owned by the service user and assessor. I think it should be mentioned that while there has been a fashion towards ‘self-assessment’, that concept of self-assessment is incorrect and legally not possible: no organisation is going to allow someone to have what they want unchallenged. I have always feared that when self-assessment has been adopted in good times, it will raise greater suspicion in bad times as professionals may find it harder to trust. I believe coproduced support plans are far more stable as both sides have agreed to them.
This leads me to where I believe the whole assessment process should be going, which is interdisciplinary teams that support the total impairment-related living support someone needs, which may include services and funding to support people with daily living, mobility, long term health needs, education, training, employment and so on.
I believe local specific teams could support people through distinct parts of their life journey in particular pathways such as from a car accident, through rehabilitation, and back into full employment. Another example would be someone with a life-long impairment, being supported through education, university, independent living, employment and so on. The focus will always be on people’s specific outcomes.
These sorts of teams already exist but are too few to make a massive difference to the nature of impairment support. Five years ago I had an acute nerve virus that left me temporarily paralysed from my naval downwards and in chronic pain. While my discharge from hospital was very poor, I fought hard to get rehab and I am very fortunate to be successfully referred to my local Community Neurological Rehabilitation team. People who know me know I do not praise people without good reason, especially not where people are just doing their job, but this team was truly amazing and was a perfect example of the person-centred outcome based teams I am now advocating.
The team was made up of professionals from a number of backgrounds, with a physiotherapist being my ‘key worker’. They focused on the goals I set myself and allowed me to be in the driving seat. The amount of physio I had, in my own home, changed week by week depending on what I needed and indeed wanted. I communicated with the team by email, my preferred method, and appointments were made to fit around my schedule. Other professionals were brought in as they were required and equipment was brought in as I needed it and more importantly taken away when I had finished with them without hassle.
It is hard to fully describe the dignity and control the team gave me but I think it shows how assessment processes should be organised and services developed, where it is customised to the situation and preferences of the person it is about. To deliver this en mass would require a major reorganisation of services from various departments, and a major shift and merging of the various cultures in which different parts of impairment support is provided. It would also need professionals to engage more with users, to provide users with more confidence and believe in their human potential with the endless possibilities that brings. This also means that while professionals should see users as partners, they also need to feel more confident to challenge users who are unwilling to consider their responsibilities.
This article is just a starting point in what could be a huge discussion in the whole future of impairment support and how co-produced assessments play an important role in this.
Simon Stevens is an Independent Disability Issues Consultant, Trainer and Controversial Activist with Cerebral Palsy.