One of the myths of independent living that I have grown up with is that people with impairments are the experts about their situation, especially when it comes to what they need in terms of social care. This has led to a demand for self-assessment, where people with impairments decide themselves what support they require with little input from professionals.
While I absolutely believe that people with impairments can certainly have an expertise to bring to the table, it can never be assumed and must be earnt. Simply having the label of a ‘disabled person’ does not make you the expert as it is based on expertise and understanding. Someone who is newly impaired has to learn about their condition and how it relates to them and what they require to meet their specific outcomes. This is on top of a grieving style adjustment process that adds additional emotions to the decision making process.
While all people with impairments should have full autonomy over the decisions everyone else has, no one has full autonomy over their relationship with the state in all its forms. Users of social care should absolutely be involved and have a say in the decisions that are made about their social care, as it is often so fundamental to their way of living, and this is where coproduction comes into play.
Coproduction is when users and professionals combine their expertise to reach a suitable solution that both parties are able to agree upon, acknowledging both sides have something to contribute. The negotiations should not result in compromise, where one or both parties have to sacrifice something important, but rather a win win solution. This sometimes means thinking outside the box and looking to how to achieve outomes in new ways as opposed to hanging on to preconceived ideas about solutions.
This means that people with impairments must recognise the limitations of their expertise and be willing to engage with the professionals involved in their assessments. The attitude of entitlement that currently exists throughout society does not help people to achieve their outcomes if it stops them from engaging. Professionals also need to be willing to listen to users, and more importanty be able to provide constructive answers to their concerns if a cut in resources is proposed, even it is not a cut in someone’s ability to achieve their outcomes in a different way.
I fear the right to independent living is code for a right to self assessments regardless of need, outcomes or resources. This would create a two-tier system of social care, which already existed with the Independent Living Fund, where the middle class elite, along with those lucky enough to meet the criteria by default, will get more than they require, at the cost of everyone else within what will always be a resource limited system.
Disabled people are not always the experts and they can be challenged appropriately like everyone else. We all have to demonstrate our expertise through experience and understanding as opposed to simply being assumed by divine right.
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