Attacking the 'Fitness Crisis' Among People with Disabilities
Clinicians and therapist don't often focus on promoting fitness and wellness among people with disabilities after they are discharged into the community. In this MossRehab Conversation, James Rimmer, PhD, talks about his research and the need for a new approach. Dr. Rimmer is the inaugural Lakeshore Foundation Endowed Chair in Health Promotion and Rehabilitation Sciences and director of the Lakeshore Foundation/University of Alabama Birmingham Collaborative. He has been developing and directing physical activity and health promotion programs for people with disabilities for 30 years.
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Welcome to a MossRehab Conversation, part of a continuing series of discussions with pioneers in physical medicine and rehabilitation from one of America's top U.S. News-ranked rehab facilities. In this episode, we're delighted to be joined in this educational effort by James Rimmer Ph.D., the inaugural Endowed Chair in Health Promotion and Rehabilitation Sciences at the Lakeshore Foundation, which provides residential and onsite exercise programs for the disability community. He is also director of the Lakeshore Foundation University of Alabama at Birmingham Collaborative. Dr. Rimmer has been researching and promoting physical activity and wellness for people with disabilities for 30 years, and he says his interest in this area was first sparked as a child growing up in the New York City projects where he spent a great deal of time playing outside.
Dr. Rimmer: And at a very early age, it was very disturbing to me to see many children sort of ostracized because they had disabilities or they had certain conditions where they were awkward and unable to catch a throw or kick a ball. So it really bothered me, and I began teaching these young kids try to work with them on catching throw and kicking and doing all the sort of things that the rest of us were doing in the community. Today it's kind of connected to something that I live by which is called mindfulness the essence of understanding the term compassion and how we need to really serve others before we serve ourselves. I think that's where it all started just as a young kid growing up in the projects and seeing a lot of discrimination exclusion within that whole network of kids participating in different types of sports. It gave me a sense of self-esteem to be able to play and be successful so I kept thinking how can we do this for children with disabilities right because if you adapt to sport they should be able to participate as well if you give them a little bit more time outside of class and so I went off for a Ph.D. and adapted physical activity. And my whole entire career since 1975 has been working with children adults and seniors with disabilities.
Why do you suppose there's been such limited research around fitness and people with disabilities so far and how do you feel we can fix that situation?
Dr. Rimmer: There’s definitely a great divide between what happens in rehabilitation and what happens in the disability community post rehabilitation. And I think that gap is still there. There's just no transition, there's no good transitional program. Resources are limited. When we talk about physical activity and exercise and recreation sport. There are these quote unquote special rec programs but they're limited in nature. They might be one to two days a week . So the whole concept of what I've been working towards is this area called inclusion. How do you adapt things so that people can be included in existing programs rather than reinventing the wheel or doing something that we would call separate but equal. Right. So you've got these specialized programs that are for people with specific disabilities. But yet the mainstream of health promotion and wellness still remains largely inaccessible to people with disabilities.
Would you say there's a fitness crisis among the disability community?
Dr. Rimmer: Oh absolutely. I've never heard it said that way but I would certainly agree with that term. It's definitely a crisis. When you look at the data the rates of physical inactivity among people with various types of disabilities, in particular people with mobility disabilities, is astounding. We're talking about a very small fraction of people who get regular aerobic exercise and yet when you read the literature on the importance of aerobic exercise it's staggering to see how little is actually occurring in the disability population in this area that has been shown time and time again in the research literature to have profound benefits both on the improvement side and the protective side of different systems - the cardio respiratory system, the neurological system, the brain functions better with exercise, the heart and lungs function better, the circulatory system is much improved, kidney. Almost all of the systems of the body, kidney, everything else is benefited. Why aren't we seeing more aerobic strength activity in disability population? It's largely due to the extent that once they acquire an injury or if they're born with an injury there are these enormous sets of barriers that cut across physical, social, economic, environmental, attitudinal barriers that prevent participation.
Well now you're touching on my next question what are the biggest barriers and toughest challenges to better fitness among this group.
Dr. Rimmer: I think the biggest barrier is just a lack of awareness. I don't see in the fitness community a pervasive underlying negativity towards disability. I don't think this new generation that grew up with the federal laws that relate to providing free and appropriate public education to children and making sure that is architecturally barrier free buildings to the Americans With Disabilities Act and the antidiscrimination laws. This generation certainly has a much better attitude towards disability, but I think what ends up happening is they don't see the connectivity with what they do. So when they see someone with a disability their first reaction is, “Oh that's a person that needs to go to a physical therapist or a rehab provider because I don't know what to do with them.” And so there's a lack of training in many exercise science programs across the country and there's also a lack of awareness. Why do I need to do this when they can go see a physical therapist, and, of course, that's not the case because physical therapy is covered by insurance but it only covers it for a limited period of time and any individual is pretty much on their own in the community. There's an environment filled with obstacles including mobility and lack of availability to fitness clubs.
What would you do to change that?
Dr. Rimmer: I think the first thing I would do is build a model where you can start to get people with disabilities connected through some sort of platform technology where they can work out together virtually in their home setting. So when you think about disability you've got to think about there are so many different barriers in what we refer to as a socio-ecological model. There are intra individual barriers. There are barriers between the individual and family or caregivers who need to help us support them. There are barriers in the community. There are barriers that are considered to be organizational and fitness centers and gyms and bike paths and roads et cetera et cetera. And then there are policy barriers, where some one with a disability who's on limited resources is not going to be able afford $60 or $70 dollars a month for a membership.
So when you look at all of those barriers I think what we're starting to realize is you got to just start at the most convenient point for the individual. In my estimation and what we've seen in our research over the last couple of years is that technology is becoming more ubiquitous and more robust, so people with disabilities are getting more access through the internet to opportunities to participate in exercise. Now the challenge, of course, is that to participate in exercise one of the most important and critical elements to success and adherence is some kind of social component. So we've been toying with this platform where we have a virtual personal trainer who can dial up the individual and they could set a time of the day when they want to work out. We give the individual an arm odometer or a leg odometer – a $200 piece of equipment - and then there's platform that we have developed that allows them to monitor their heart rate and their respiratory rate.
And so we're starting to get into this personal training where an individual instead of getting up and spending 25 five minutes getting dressed, waiting 50 minutes for the accessible transportation, getting to a gym and spending another 25 minutes getting undressed, then spend another 25 minutes getting redressed, by the time you get it all set up for some people particularly people who are wheelchair users it could be two and a half, three hours. Nobody has the time to do that. If you can develop this platform and virtually train people some day very soon you can have five, six, seven people working out together and also being able to interact with each other. At some point in time they may be able to see each other as again the technology expands.
Are there segments of the disability community that you feel need particular attention?
Dr. Rimmer: I think people who primarily are in the area of these traumatic injuries - we're talking about individuals who have spinal cord injuries either traumatic or there is some form of an accidental operation that causes paralysis. Also people with traumatic brain injuries. These neurological conditions are very, very tough. Many of them end up with severe traumatic brain injuries where they need full time care giver support or part time caregiver support or they have memory issues. So when you get into the world of these neurological conditions - Parkinson's might be another example - multiple sclerosis. There's a great, great need in this particular cohort of the disability community to be responsive to many, many more issues associated with health and wellness.
Well what do you see as some of the most important steps we need to take to overcome that?
Dr. Rimmer: I think the first step is really understanding that what people do in the rehabilitation community, what rehabilitation professionals do so well in a very short period, of time has to be somehow or other stretched and continued when someone re-enters the community. Catastrophic Injuries often result in inpatient care. They might get 12 days, 14 days, 15 days. Insurance companies keep truncating the amount of inpatient and outpatient care that they'll provide through their reimbursement process. But we've got to think better about life after disability. We don't really think about that. Therapists are outstanding professionals, do a tremendous job of getting people to a threshold where at least they can go back home and be somewhat independent or completely independent. That's their job very short term - making sure they leave and that when they go home they're not going to have these adverse events associated with their acquired condition. But unfortunately what we see after that is there's a slow decline in health and function and nobody's picking this up. They may see their doctor once a year or they may get a little bit outpatient therapy every now and then. But the real effort I believe needs to be in the community. The community has to be prepared to accept that person back now with a newly acquired chronic health condition, a disability, and there needs to be some way of facilitating that communication between the rehab provider and the community based health and fitness professional.
Your work to date has also been gathering data to get a better overall handle on fitness and people with disabilities. Tell us about that and your findings so far.
Dr. Rimmer: What we're trying to do here at the Lakeshore Foundation is we have created a longitudinal study which is now going into its fifth year in 2018 but the idea there is more about changing the policy, which is what I was describing just a minute ago about the need to figure out a way where there's a better transition point from rehab to exercise. But I think the biggest thing with this longitudinal study is to keep telling the story that people with disabilities have these significant chronic health and secondary conditions that last a lifetime and that as we look at the effects of exercise and nutrition and wellness we need to be able to identify successful practices or successful behaviors that we could publish and then bring that to a higher level to the federal agencies, the policymakers to start making recommendations that people with disabilities if they can't afford a fitness membership should be provided one so that they can continue their rehabilitation and their care in the community. So there are two parts to this - one is we certainly need to think about the idea of publishing empirical data that clearly shows there's a tremendous health disparity, there's a tremendous rate of inactivity and so on and so forth among people with disabilities and that's what that longitudinal study is all about. But the other part of this is that those papers then need to drive changes in policy.
Dr. Rimmer looking back at your body of research are there findings that still jump out at you from studies that you want to highlight.
Dr. Rimmer: I think the most important part of what I've been working on is really more of the theoretical framework of bridging the gap between rehab and exercise. I think clearly the general community understands that there's a problem with this gap but what nobody has really been able to think through is how do we address this gap. So we are trying to do that in our National Center on Health, Physical Activity and Disability. We've got a couple of papers where we've actually published a new model that describes this knowledge-to-implementation framework. We've got a lot of knowledge, and we've got a lot of success that may occur at a local community. But somehow that never gets picked up and aggregated that there are successful practices out there. So our National Center on Health, Physical Activity and Disability which is funded by the Centers for Disease Control and Prevention is now trying to do that.
We're trying to figure out what is the knowledge base, how do we take that knowledge base and customize it for key providers like rehabilitation professionals. How do we start to push this information out into the community in some sort of an implementation framework and then once that is pushed out - the successful practices - how can we pick this information up in an evaluation framework so that we can re customize it and keep pushing it out the door.
So that's where I see again my career at this point. Most of my research has shown, “OK we've got these clear health disparities. There are much higher rates of obesity. There are much higher rates of physical activity. We've got these great clinical exercise training studies that show, wow, you can get people to exercise and when they exercise they get better.” There's a lot of good stuff out there, but nobody's really connecting the dots, The model in our center is really to do that. Over the next couple of years to get therapists to use the center's resources and get to community understand that with rehab providers at the front of this they need to be able to transition people into health and wellness programs in the community. Our center should help facilitate that.
You say that's the biggest thing on the horizon giving you hope for people with disabilities right now.
Dr. Rimmer: I think so because two things have happened and one is our center has had a substantial increase in funding. And now we're providing hundred thousand dollar grants to local communities. We're funding for communities to test our knowledge-to-implementation model. So I think that's one extremely beneficial aspect of this. I think the other aspect of this is this whole virtual personal training program. We have another grant where we're actually training people in the home setting. Right now it's not cost effective because it's one-on-one and it's requiring, obviously, the time devoted to a personal trainer and some technology associated with it. But again I see the future as very, very positive. As we start to see the technology expand into even the deepest pockets of rural life where bandwidth is still sort of helter skelter. I think we're going to end up seeing this emergence of community to home. We're going to build this infrastructure so that a therapist anywhere in the country can discharge a patient and say you need to go to this center Web site and get hooked into a 12 week online program a) either through a personal trainer if you feel like you need somebody socially to talk to while you're exercising or b) you can do this on your own in something called an asynchronous network where you an do it on your own. You can log in your minutes and then they'll give you some kind of health report every five or six weeks. That's where we're at now. We've got a lot of funding in the telehealth area from different federal agencies. And if everything goes well over the next three to five years we'll be able to take our National Center on Health, Physical Activity and Disability and move some of that successful telehealth practice into the center and then be able to scale it across the nation and even world.
Well, thank you for so generously sharing your time and expertise with us Dr. Rimmer and for helping MossRehab educate the physical medicine and rehabilitation community. James Rimmer is the inaugural Endowed Chair in Health Promotion and Rehabilitation Sciences at the Lakeshore Foundation and director of the Lakeshore Foundation University of Alabama at Birmingham Collaborative. Look for more conversations to come on our Web site at http://mossrehab.com/conversations. I'm Bill Fantini. Thanks for listening.