When a child is assessed for services or indeed in a medical setting, there are a series of questions which determine the level of disability. Some of the areas considered are ability, or lack thereof, to perform any daily care activities such as getting dressed, bathing, or eating. Other areas considered would be motor ability, for example when assessing Cerebral Palsy as there are various types of Cerebral Palsy and varying levels of severity. (ie: can the child sit, walk, roll, or hold an object in their hands.)

Assessments are done for respite, educational services, nursing services and beyond. They assist the care provider in knowing what level of services will meet the requirements of that particular child. As a parent, these questions can bring up a lot of emotions as more and more boxes are ticked noting their child is unable to perform each task. To this day, I dread the assessments because of this, and the repetition of saying “just mark everything as a full assist in all daily living activities.”

But I will say this: Over the years, those questions do get a bit easier to handle. 

This point is where I’m going to bring up being a full time carer. I realise in advance I may upset some carers, but I genuinely hope to not do so!

Just as with the varying degrees of disability, there are varying levels of care work provided. It’s actually obvious, to me anyway, that a fully incapacitated and medically complex child or adult will require more intensive work by a carer than caring for someone with mild disability or indeed without any disabilities at all. This brings me to my point – my question, really:

Should family carers also be assessed (as are their loved ones) on the level of care they provide to determine the supports and possibly even level of remuneration for their work? 

If carers were assessed on the level of care work provided – hours spent caring daily, level of medical knowledge and skills required, level of physical work required, for example – could this lead to more supports for those carers who are providing the more intensive caring work? 

I think most full time carers need more support. I do think, however, that the carers who are working around the clock, literally, caring for the most profoundly disabled, are in the most need of supports…just as their loved one is in need of the most intensive caring because of their level of disability.

Let’s have a discussion on how best to support the carers of loved ones with profound disabilities.