Matinum

Taking Charge of Your Health


– Supported decision making is a way to support people, so that they can make decisions by picking supporters that they trust on particular topics. – Supported decision making is an alternative to guardianship, where a person with a disability can get assistance from a
relative, a friend, or anyone to assist them in making decisions. And that ultimately, the person with the
disability makes the decision, but the supporter is
someone like an advisor that helps them answer questions
or provide information. But they are not the
one making the decision. – Well you give a person the
opportunity to make a decision. – It’s okay to have someone to
support you in your decisions that gives a little help from somebody. It could be your aunt or
you mom or dad, or anybody. – Not imposing a decision on a person, but giving them as much space as possible to be the person that
ultimately makes that decision, in an informed way. – The supporters should remember that is the person they’re working for, that makes the decision, not them. – What I tell the patients is you’re making the decisions, but you’re just identifying somebody that’s gonna help you in
case you have questions about what you’re making a decision about. Well sometimes if we’re asking Beatrice it may be complicated. And so I think Beatrice
would turn to her aunt to, you know, get some
confirmation about her, or get some support about
how she wants to do her care. It might a complicated
procedure we might be doing, or maybe a medication we want to give her. And she’ll need to talk
to her aunt about that. – It doesn’t matter what you said, if my aunt says I can make a decision, like people told me I
have to make a decision, I’m going to make the decision. – We really try to facilitate you know, where the patient is at time and how well that they understand what we’re trying to ask
that they participate in. So, we’re participating in
care plans, healthcare plans. Asking them to participate
in their healthcare is giving them quality of care that otherwise they may
not have had in the past. – One of the problems as an advocate who’s represented people
with intellectual disability, is that often, medical professionals and
mental health professionals don’t listen to people with disabilities. And they’re basically just telling them what they need to do. – We had one young man who was
given a diagnosis of cancer. He got to make the decisions when, and where and how he
was gonna participate and when he was gonna get his treatments and what his life was gonna be and he was like, I’m gonna do basketball before I go get my chemotherapy. – I suggest that doctors and nurses should talk to the individuals, the patient, the one that’s coming for the help, instead talking to their supporters. – An individual with an
intellectual disability sometimes, can struggle
in a doctor’s appointment. Maybe fearful of what’s
happening around them. Maybe they weren’t given
enough time to understand and to participate in the
discussion and in the visit. So, maybe an individual
provider out there has maybe an implicit bias
about that individual, thinking that they can’t
make a decision and then, and makes that decision, maybe in a couple of minutes of the visit, and then turns to the family member or the provider that’s with them. – The doctors and stuff
need to take a step back and take time to listen to the people, because everybody can’t
talk verbal like me, or can’t talk that fast. – If someone has to sit
and think about a decision, and they have to confer
with their family member or who they anointed as their
supported decision maker, you just may have to leave the room and let them spend time talking about it. Go on and see another
patient and them come back. – Maybe they might had speech problems because of their cerebral palsy, or they might had a stroke or whatever that slowed them down. Everything is so fast
nowadays, like a computer. They need to take a step
back, like typewriter age, and really listen to those who really trying to get their point across, and get their voice heard, in a lot of other ways. Or, it maybe something you take home and you come back the
next day or the next week. There’s nothing to say that you can’t see that
patient again and again, two, three, four times
before that decision is made. I think that that’s something that providers
don’t really think about when it comes to, you know, oh yeah, I just have ’em come back and we can talk about it some more. They want that decision there and now, and then we can get on with
whatever’s gonna happen. – There’s still hard
things in decision making, that supported decision making. It makes a lot of it easier, but it’s still intrinsically– some decision making, it’s intrinsically going to be not straightforward and
stressing of the person, and uh, difficult to be sure he
made the right decision. – Sometimes doctors look at our equipment, before they look at us as a human being and a person. – We have to give them the opportunity to be a part of the
world and take chances, and make mistakes and– – Fall and get back up. – When I get older, I have to be making decisions for my kids.

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