Table 5:

Key Quotes from Expert Panels by Dimension

Physical Health	Mental Health	Social Health
“Can the child see properly?” “Can they hear properly?” “Are they in pain?” Because you cannot function unless you’ve got that basic physical health sorted out. So I don’t think we should just drift too far from that. Those things matter as a baseline and a starting point for you to be able to participate.- EP2, S1 “I look at other people -- who are physically healthy but are struggling significantly.”- EP2, S3 “Maybe somebody who has something relatively minor, in terms of what you would think would impact their functionality, but it has a much bigger impact on them, and not making assumptions based on that list of conditions about a person.”- EP2, S5 “But there’s just this tendency to look at the list or look at the IQ score, or whatever it may be, and just make these presumptions about what a student can and cannot do, and whether they can and cannot be educated, and that impacts everything about their life.”- EP2, S5 “My model of being healthy is basic physical health, and that you can participate in the world.”- EP2, S1 “Somebody could report they’re feeling good when they are grossly overweight. Not eating a healthy diet. So where does the very basic stuff like how tall is this person and how much do they weigh come into this?”- EP2, S1 “How is the digestive system functioning, because that can be a big part of wellbeing.”- EP2, S4 “This reminds me of the little list that I go through every time I hit up the neurology office with my daughter, and it lists every system in your body.”- EP2, S3	“To the degree that a lot of your mental well-being comes from interactions with other people, the ability to find new and different ways to interact is very important. Right?”- EP1, S5 “For the mental well-being, what are the struggles for this family, for the caregiver, and what are the struggles for the child?”- EP1, S7 “Not everybody has that survivor mentality, has that coping mechanism innately in them, without it being really specifically taught how to cope in certain stressful situations”- EP2, S3 “I think two of the subtopics that come out of the coping, in my experience, with other friends with Down syndrome is they are resilient regardless of what we prompt them to do. And they have empathy regardless of what we prompted them to do. But managing emotions and maybe some adaptive behaviors need some prompting. So the two that stick out is independent to me for coping would be resiliency and empathy.”- EP3, S7 “Where does things like play fit into mental health? So, I mean, we all have to have recreation, and that’s important for our mental health.”- EP3, S4 “The level of self-fulfillment and having a meaningful day in life is really a person-centered theory. And it controls one moods and identifies moods in other people.” - EP3, S7 “Self-determination. It’s your level of choice in life. [if you’re] happy with the choices that you have available.”- EP2, S3 “Another big, another big one is affect, right? So how often are they smiling? Do they look happy? Do they look sad? Do they look anxious? Just a visible affect. And if it’s congruent with how their mood actually is.”- EP4, S4	“You might have two people and neither of them have kind of a social group. But one of them might have the opportunity to but can’t because of their health, and the other might not have the opportunity. And so I think that sort of opportunity is going to be a big thing to try and tease out because there’s a world of difference between people in those two situations.”- EP1, S9 “It would be hard to tell what part of the social health-- there’s no way to separate the opportunities from the social health.”- EP2, S4 “One thing that we struggle with is when a lot of our adult patients age out of school, many of them just end up hanging out, and it’s a tough transition. We see a lot of issues during those first few years, weight gain, we see a lot of mental health, and kind of social stuff. I mean, they don’t have anything to do. So I think it is a structural issue that has very real effects on individuals.”- EP1, S6