I was reminded the other day of a conversation with a colleague about our responsibility to people to intellectually disabled people to…keep them safe from themselves, if you will. It got me thinking about Power of Attorney and trusteeships.
The conversation had had come about because we were both talking about how many people we’d supported in our careers who smoked, and our concerns that it was difficult to make them understand what a health concern it was and what a drain on finances it could be. She made the point that if people intellectually disabled people who really didn’t have a conception of money and budgeting were allowed to buy as many cigarettes as they wanted, they could easily spend all of their money for the month – rent money, food money, bill money – on cigarettes and find themselves out on the street.
As heartless as this might make me sound (I really don’t want to see people on the street), I’m torn about this. I think that there’s reasonable safeguards for intellectually disabled people (and that includes Power of Attorney, when used properly and respectfully) – and then there’s “getting all up on their business”, as the saying goes. And sometimes that I think that it’s a very fine line.
What is the Power of Attorney Role?
I do see the desirability behind some measures such as a Power of Attorney for Personal Property, and trusteeship for income support payments for people that have difficulty managing their money – as long as there’s an agreement that the person’s choice about how to use money beyond the minimum required to keep their rent and bills paid is theirs.
However, if I happen to be someone’s trustee for Ontario Disability Income Support Payments (remember, the person has to agree to this) and they want to use the $150 left after monthly bills are paid for cigarettes that they smoke in one day, is it really my place to say no? Is it really even my business to know what they’ve spent the money on, if it’s agreed that this is spending money? I don’t think so. It’d be difficult to watch them go without spending money for the rest of the month – but, hey, tough lesson. I think we’ve all learned a lesson like this at some point, haven’t we?
Same with the Power of Attorney for Personal Health. I understand why it’s necessary. I’ve seen cases where I’ve certainly wished it was easier to get. But I’m ultimately glad that it’s not, and I think that Power of Attorney needs to be enforced over an individual’s personal decision about his or her health only after a great deal of consideration. Many, many people that we consider “of sound mind” and “normal intellect” make decisions about their health without understanding (or totally disregarding) all of the relevant information, and to say “You can’t make the decision because of your intellectual disability” would be unfair.
Not that I think that support agencies for intellectually disabled people are absolved of responsibility to ensure that the people they support about healthy choices or to do their utmost to make sure that when there’s a medical decision to be made that individuals understand all their options to the best extent possible. But this is the place of good, quality, continuing health care by a team including, at a minimum, a doctor and a dentist, and by specialists that take their time and make sure that information about health decisions is expressed in the way that the individual best understands. The medical community needs to find ways effective ways to connect with people with all manner of disabilities about potential issues affecting their health, to make them aware of risk factors and to provide needed information, and to find ways to work with the individual and (when necessary and appropriate, and when the individual desires it) family and other support systems to mitigate risk behaviours.
But sometimes people don’t want to change risky financial or health behaviour. And it’s not the job of the Power of Attorney or a trustee for income support to protect at all costs.
Does This Make Life Messy?
It’d be so much easier to just make “good” decisions for people. I know that there are times in my career when watching someone that I support make a bad decision about their finances or their health has been heart-wrenching. I can’t even imagine what it must have been like for the families. I understand why families of intellectually disabled people get Power of Attorney. I understand why trusteeships get put in place.
Messy, yes. A million times yes.
But, unfortunately, we’re still all learning about putting equal rights in place for all people as we go along. It’s going to be messy for a while.