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Season 1, Episode 4: Measuring Functional Ability After Spinal Cord Injury

May 1, 2023

In this episode, we discuss the development and use of a tool that measures function after spinal cord injury: the Spinal Cord Injury Functional Index (SCI-FI) / Assistive Technology (AT).

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Episode Guests

David Estrada, JD

David Estrada, JD, represents United Spinal Association as a peer mentor, board member, and former executive director of its Greater Boston chapter as well as a national chapter liaison. He is a program manager at the Spaulding New England Regional Spinal Cord Injury Model System and the Exercise for Persons with Disabilities Program. Living with a spinal cord injury and wheelchair user for the past 27 years, he has focused on consumer-led advocacy locally and nationally to promote high quality services for better healthcare management and access to resources for the SCI community. For nearly a decade, Dave was an Athletes with Disabilities Coordinator for the Boston Marathon and continues to promote adaptive sports participation.

Alan Jette, PT, PhD, MPH, FAPTA

Alan Jette, PT, PhD, MPH, FAPTA currently serves as Editor-in-Chief of the journal PTJ and is Professor & Dean emeritus at Boston University.  His scholarship focuses on evaluation of rehabilitation outcomes, the measurement of function, and the prevention and treatment of disability.  He served as Dean of Boston University’s Sargent College of Health and Rehabilitation Sciences from 1996-2004, was Professor of Health Policy & Management at the Boston University School of Public Health from 2005-2017, and Professor of Rehabilitation Sciences at the MGH Institute of Health Professions from 2012 to 2021.  In 2013, Dr. Jette was elected to the National Academy of Medicine, formerly the Institute of Medicine.

Sarah Skeels, BS, MPH

Sarah Skeels, BS, MPH has a BS in Exercise Physiology from the University of Virginia where she focused in adaptive exercise, and a Master’s Degree in Public Health from George Washington University, where she focused on Health Promotion and Disability.  Sarah is a consultant on numerous research projects that involve people with SCI, a member of the Community Advisory Board with the Spaulding New England Regional Spinal Cord Injury Center; Lecturer in the Department of Occupational Therapy at Tufts University; and Senior Teaching Associate in Behavioral and Social Sciences in the School of Public Health and Brown University.  Sarah serves on numerous boards of non-profit adaptive sports organizations and is a Commissioner on the RI Governor’s Commission for People with Disabilities.  Sarah is a person with an SCI as a result of a bicycle accident 33 years ago, and is an adaptive snowsports instructor, a former Paralympic-level sailor, an avid outdoorswoman and most importantly, a mom.

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Shonali Gaudino, OT, Host, Producer, Co-Creator

Vanessa Bartlett, Producer & Sound Engineer

This production is a collaboration between, and partially funded by, the Rehabilitation Outcomes Center at Spaulding and our Model Systems: the Boston-Harvard Burn Injury Model System (NIDILRR Award #90DPBU0008), the Spaulding-Harvard Traumatic Brain Injury Model System (NIDILRR Award #90DPTB0027-01-01), and the Spaulding New England Regional Spinal Cord Injury Model System Center (NIDILRR Award #90SIM0017-01-00).

Transcript of Episode 4

00:00:00 Shonali

It's really about the body of work, right?

00:00:02 Alan

That's much more interesting than the article.

00:00:05 Shonali


00:00:05 Alan

Yeah, truly.

00:00:07 Alan

I mean the articles are very technical.

00:00:10 Sarah

But it's such an innovative measure, it's such an innovative, I think, it's a very innovative measure because it it takes because of how Alan went about making sure it was…

00:00:20 Alan

We should, we should get going so we capture that.

00:00:23 Shonali

Hey, we're recording. Yeah.

00:00:24 Alan

Oh we are? Finish your comment.

00:00:25 Sarah

Well, now I'm going to forget. No, I think it's innovative because I think that there's a lot of attempts to standardize spinal cord injury, obviously and we all know that that's really hard to do. And that's what I feel like we were doing with this measure was to try to capture the abilities of people self-reported but trying to capture what they felt their capabilities were. And I think other than “ohh you have a your bicep is a 5”. What does that mean? It means it's a 5. OK. What does that mean? What are you going to do with that and how do you put it all together? And I feel like that's what this measure does better than the certainly the other ones is it's asking the end user or the end person what can you do versus what can't you do? And I I think that. There's a big shift there.

00:01:25 Shonali

That tells me that you've been teaching in an OT program for a long time.

00:01:29 Sarah

I've been living with a spinal cord injury for a lot longer than that, yeah, judged based on how I appear and it I don't like that so. So I talk about it differently.

00:01:51 Shonali

Welcome to Finding Strength. The Spaulding Rehabilitation Podcast, where we'll try to connect the dots between rehabilitation research and the people who are most impacted. This production is a collaboration between the model systems and the rehabilitation outcomes center at Spaulding. I'm your host, Shonali Gaudino. I'm an occupational therapist, and I've been working at Spaulding for over a decade. I'm now the administrative director of the Rehabilitation Outcome Center and I’m on a mission to build bridges amongst our community of clinicians, researchers and people with lived rehabilitation experience. In today's episode, we talk about a measurement tool called the sci-fi. Yes, the sci-fi. It stands for spinal cord Injury functional index. One thing I've learned is that researchers love their catchy acronyms, so I'm going to borrow some language from a paper by David Tulsky and Pamela Kissala from 2022 and tell you that quote, “The sci-fi is a system of patient reported outcome measures of functional activities developed specifically with and for individuals with spinal cord injury. Generic measurement tools of physical function, IE those focused on the general population, tend to overemphasize mobility and do not contain enough items at the lower end of the functional range, such as items appropriate for individuals with tetraplegia. End Quote. So we'll talk today about the sci-fi with one of its creators, Alan Jette. Alan is hugely influential in the world of rehabilitation measurement. His titles have included Dean of Boston University’s Sargent College of Health and Rehabilitation Sciences, my alma mater, Professor of Health Policy and Management at the Boston University School of Public Health and Professor of Rehabilitation Sciences at the MGH Institute of Health Professions. He was elected to the National Academy of Medicine in 2013 and currently serves as editor in chief of the journal Physical Therapy. Doctor Jetty developed the sci-fi alongside our other guest, Sarah Skeels. Sarah holds degrees in exercise Physiology and public health. She is a consultant on numerous research projects that involve people with spinal cord injury, or SCI, a member of the Community Advisory Board with the Spaulding New England regional spinal cord injury model system, lecturer in the Department of Occupational Therapy at Tufts and Senior teaching associate in the Behavioral and Social sciences in the School of Public Health at Brown University, Sarah serves on numerous boards of nonprofit adaptive sports organizations, and is a Commissioner on the Rhode Island Governors Commission for people with disabilities. Sarah is a person with an SCI as a result of a bicycle accident 33 years ago and is an adaptive snowsports instructor, a former Paralympic level sailor and avid outdoors woman, and most importantly, a mom. You will occasionally hear a fourth voice in this episode, and that's our old friend David Estrada, who joined us in episode 2. If you haven't heard episode two, check it out to hear Dave and Dr. Juan Herrera Escobar talk about measuring outcomes in people with traumatic injury. So for today, let's start with talking about why the sci-fi was developed and what it means to people.

00:05:14 Shonali

How does having an assessment tool translate to real life?

00:05:23 Sarah

I think it gives possibility. As all this information is being gathered into a database, we can look at trajectories of spinal cord injury now. You know, first five years, second five years and say more definitively what is that going to look like for you as this newly injured person. But I also think it will inform like as I get older, you know, 32 1/2 years in like I'm aging and it's really impacting me now. It wasn't 10 years ago and I think the the spinal cord injury community needs to know more about that as well as healthcare providers so they can help people prepare for that. So I think it impacts your day-to-day life by giving you something to reach for.

00:06:11 Shonali

Yeah, it changes the way that we define what the goals are.

00:06:14 Alan

It also, it enables clinicians to go beyond their clinical experience when talking with patients about realistic prognosis, lifelong prognosis. And you really can't do that without tools such as the sci-fi, which allow you to look at trajectories in functional aspects of people’s lives in different time periods. Short term as well as long term, and it also helps you evaluate the care that we provide to people who have a spinal cord injury. And it helps us evaluate policy changes for example the shortening of inpatient stays, rehab stays, following a spinal cord injury is something I've been very concerned about. And with tools such as this, if they're used correctly, you can ask questions like, “what are the impacts on people's function with this major policy change?” You can't do that otherwise.

00:07:26 Shonali

What is using it correctly entail?

00:07:28 Alan

Well, it means collecting the information, systematically compiling it in large numbers of individuals and then following them over time. Which is something that we don't always do in clinical practice. We rely a lot on our clinical experience. That's one of the advantages of the spinal cord model systems.

00:08:01 Shonali

Quick refresher or helpful definition for those of you who haven't been listening to our other episodes: Model systems are federally funded programs for people with burn, spinal cord, and traumatic brain injuries. They deliver clinical care but also collect data every five years throughout a person's life span to conduct research to improve long term functional, vocational, cognitive and quality of life outcomes. They are really unique and special programs and quick brag - Spaulding is the only institution in the country to house a model system program in all three areas. The sci-fi was partially developed with funding from the Spaulding SCI Model Systems program.

00:08:54 Alan

They've been following people for 30-40 years now and tracking how they're doing functionally, how they're aging. How much does aging with spinal cord injury differ than aging without because we all age and we all feel the effects of aging, but is premature aging an issue? That's a a big topic that, using instruments like the sci-fi systematically over time allows us to answer those kinds of questions. Traditionally, we've looked at function in a very narrow way and an instrument like the sci-fi looks at different areas of functioning. People's basic mobility, which tends to be what historically has been done, but their fine motor function and their self-care function, ambulation for those who have some ambulation ability, wheelchair mobility. These are all distinct areas of functioning and we've not looked at function in that way, historically, we've kind of reduced it to a very simple set of few questions and this allows us to look much more richly at how people are functioning post spinal cord injury and then throughout their life course.

00:10:24 Sarah

I just remember wanting to give a quads which I'm supposed to say Tetra now it's just really hard to remember, but like the scales that were before, we're literally giving you no credit if you weren't walking or if you weren't, didn't have the muscle return, but that other person who's using a power chair is living very independently, but they don't they don't score well, and I I felt like it wasn't there, you know, like it's not fair to give this person like it's hard to use a power chair when you first get in a power chair. It's not like you hop in and you know exactly how to use the joystick or whatever, and so part of our, part of these questions ask about that.

00:11:05 Shonali

In 2015, you're one of the early articles on the sci-fi you write quote, “The rehabilitation field lacks A consistent approach for assessing function when assistive technology is used.” So, what does the Sci-fi do differently?

00:11:20 Alan

That's a good question, and we didn't get this immediately, I will admit that. The first version of the sci-fi that we developed did not explicitly take into account the impact of using assistive technology on people's ability to function. And so we ended up developing 2 versions, one that looked at how people were able to function without using any technology, and then the second version, how they were functioning with assistive technology and we thought both were valuable. Because if you're looking at using the tool to evaluate return of intrinsic ability to move muscles and joints the first version is very useful. If you want to use it to evaluate the rehabilitation interventions that have been used with people you need to take into account assistive technology. So we have two versions and so you, the user can decide what your purpose is and then choose the version. And that way I think we avoid the problem of not giving people credit for how they have accommodated and adapted and improved their function over time, even though they may not have regained neurologic ability. So that's and we didn't do that initially and I'll never forget when we went out and share the fruits of our work both individual spinal cord and with clinicians, they were not happy. They're not happy because they really felt we were not giving them their due. And so we went back to the drawing board. That's why it took ten years. We had to do a whole new cycle.

00:13:26 Sarah

Well, I remember asking the questions to people saying, you know, without your technology, can you do this? Like, well, why would I? What do you mean? The reason I you I have the technology is so that I can do it. so You know I don't. There was a lot of like, why are you even asking me that? And so I think that's why it was like you could do either. It also could look at the impact of technology on people's ability to function.

00:13:50 Shonali

Looks like you go to the eye doctor you check your your power with your glasses on, because that's how you live your life, is with your glasses on.


00:13:59 Sarah

And I also think that there shouldn't I think the hierarchy that could be established of Well, I can do it without equipment or and, but somebody else needs equipment. The person who doesn't need equipment isn't any better or worse than the person that needs the equipment, it's just what they do, is they do it differently.

00:14:17 Alan

There is value in the early version if you're doing interventions aimed at restoring neurologic ability cause then you don't want to take into account assistive technology because it will confound what you're trying to evaluate, and that's important as people are coming up with what they believe to be efficacious interventions, we need ways to evaluate that.

00:14:45 Sarah

I was listening to you to talk Alan and thinking about how back to this short rehab stay question and the dangers of it, it's such a bad idea and I think, the data from outcome measures are only going to continue to show that. When you look at the secondary complications that are developing as a result. You know, back in my day, I 1990, I had I was in rehab for 5 months. And that wasn't even a lot for that day some people were in for a year and.

00:15:18 Dave

Do you feel like it was adequate though 5 months? Looking back?

00:15:20 Sarah

Yeah, I feel like, yeah, I was ready to I was actually ready. I mean, I was scared, but I was ready to leave. I was like I had was at the time you were also allowed to go on weekends, you earned your right to go home. It wasn't like it is now. If you can go home on weekends, you go home permanently. No, you can't. It's just a weekend. It's just to give it a shot. You can, your family can keep it together for 48 hours or 36 hours or whatever it was, but not for the rest of eternity necessarily. So unfortunately, I think. I don't understand. I I feel like it's much more expensive now because people aren't given, yeah, it and it's very harmful to the lives of the people that are in the system.

00:16:03 Alan

The sad part is we actually don't know what the sweet spot is for the inpatient rehab stay.

00:16:10 Sarah

We we know the extremes, right?

00:16:12 Alan

Right. And that's because we haven't learned how to use the data to really help us figure out what's the sweet spot given your particular situation. We have measures but we need people to use the measures in the systematic way. It’s not enough to just have it.

00:16:25 Sarah

Have it, right. You have to use it.

00:16:39 Shonali

On previous episodes of this podcast, we've talked about how essential it is to include representation from the target population throughout the research life cycle. Dave has said he hopes this podcast will inspire people with disabilities to enter the medical field. You know, be the change. In this next section, Sarah will talk a little bit about that evolution and how she was, as she calls it, funneled into her career.

00:17:16 Sarah

I do believe that our voices, those of us living with spinal cord injury at this point, we are able to find our way into spaces where we can try to change the systems. It's much more prevalent now than it has been ever before and I think it's because you know, now we're all we all are federally allowed to have an education, right? We must, we must be educated. We know that what IDEA 197… 3, 4, 2, I don't know around there. So you have a more educated group of people who are now like, hey, I want to get into that space too, and you see, there may have been one person there 25 years ago, and now you're going to maybe see five or six. You're seeing more people with disability becoming PHD's, and it's still really hard to get into healthcare. Still really hard for someone with a disability to get into healthcare.

00:18:15 Shonali

Why do you think healthcare is such a hard field for people with disabilities to get into?



00:18:22 Alan

Yeah, that's the case of physical therapy. We've been working on that physical therapy has… not done a good job. A lot of the requirements are extremely difficult for people with disabilities to meet, and there's there's a lot of effort underway to try to change that. But it requires cultural change.

00:18:44 Sarah

Well, I was, yeah, when I got injured, I was I had already gotten into PT school, so I was all ready to go to school, and then I got injured instead and all I got was a letter from the school saying good luck in life, but there's no way you're going to be able to do this, and so we are disenrolling you. And and at the time I was like I had I had so much on my mind and trying to figure out what's this going to look like. I couldn't fight them, so then I tried other healthcare. I applied to lots of other programs and they were all like, “we want you to come in for an interview because we want to see you physically we want to see if” and I've been told right to my face, “well, you know, you completely qualify, but we're not going to let you in because we don't know how you're going to do this, that or the other thing.” And I remember in the interview being like, “well I've done all these other things that everybody told me I couldn't do” “Well we feel like if we let you in we'd be setting you up for failure because you you won't be able to do your internships or whatever those were.” And so that's when I was like, I'm just gonna stop looking into getting into healthcare and I'm just, you can't you can't kick me out of an MPH school because my legs don't work, so that's how I ended up where I ended up was I got funneled there and there was nowhere else to go. I have a friend now who's a wheelchair user, who's a hand she's an an OT and hand therapist. That makes total sense.

00:20:08 Alan

Well, that's one of the big things that has to change. The requirements should accommodate specialization and not require everyone to be able to do everything. That that's the big hang up in the in the physical therapy world because right now every student has to have competency in every area. But your example is a perfectly good one with if you're a hand therapist, there's no reason why you can't do that from a wheelchair. None whatsoever. There are certain aspects of practice probably would not fit. So what? I mean it just requires a change in in culture. It's very doable.

00:20:50 Dave

Yeah, we've had, I think 5 or 6 wheelchair using residents come through Spaulding. And as you know, our Chief Medical Officer is a full-time wheelchair user.

00:21:00 Shonali

So Sarah, you said that you acted a consultant on research projects what kinds of advice do you give to researchers?


A lot of it is the perspective of the person with spinal cord injury, but really what I do a lot is, “why don't you ask them?” I'm not The Lorax. I don't speak for all the trees. I only speak for, from me and my experience. But a lot of it is setting things up like is is the space set up for a bunch of people with spinal cord injury. What's the accessibility? I also will talk a lot about, how should we measure this or what should we be focusing on? What kind of lift do you get? There's a lot of of scans that have to be done. Are the people that are doing the scanning, do they even know how to help people transfer on and off of things? So it it's a lot of like thinking about what the project is, and then how are you going to make the study participants feel comfortable so that they can go and participate to their best ability. I also think it's gives the project credibility because you can share language with the team and they use that language and then they're trusted faster and so they're like ohh good you Get it. OK, good. Phew I don't have to, you know, as a person with a spinal cord injury many times you're educating people all the time and it can be exhausting. And you want people to stay in a research project once they start, and so. You want to make sure they are doing OK, so they don't drop out.

00:22:45 Shonali

So we know this, we know we need to include the target population in all aspects of our work but what identity title do you use? In e-mail to prep for this episode, speaking of constantly having to educate people, Sarah pushed back when I asked her to share her patient perspective. So you’ll hear us talk about two angles to this. One is about the definition of a patient, and I think Sarah's point here was that you're really only a patient while you're actually consuming medical services. It's a temporary title. The other angle is, what are the right words for us to use in general? Not to belabor semantics, but our words do carry emotion and have implications beyond just a bunch of letters strung together. Years ago, there was a shift to using person first language, emphasizing that we are more than our diagnosis. For example, you're a person with dementia, not a dementia patient. In occupational therapy school, we were taught to call people clients. I've heard the words consumer persons served, stakeholders and constituents all be used. So what's the right answer?

00:23:56 Shonali

Sarah, you schooled me a little bit in email before we got here and I'm going to read the quote from your e-mail. I think that there's two pieces. One side is, “the entire reason that I do the research that I do, and the teaching that I do, is because of the ways I was and continue to be treated in rehab services.”

00:24:14 Sarah

Belittling me. Lording power over me. Telling me what I need. I'm pretty sure about what I need and and I don't really like being funneled into this. Well, this is where we put you people. And so I feel like getting involved in the way people are trained. And being involved in some of the research that's being done helps. To me, that's that's a form of advocacy, and it's a way of at least being, you know, you're going to hear me talk about Doctor Seuss a lot, but like the Horton Hears a Who? You know we're here. We are here and we matter and we have something to say. And we have something to contribute. It's not all about us and that's not what I'm trying to say either, but just, can you please listen to me and take me for who I am, not who you've decided I am.

00:25:10 Shonali

The other thing that you had said, was, and this one I struggled with, but as we're starting to think more of this collaborative model of healthcare. At what point? What language do you always use for the person, right? Like we want those patient perspectives, but we also want the Community member perspectives, and we want the the consumer advocate for like trying to figure out what the right word always is. So your phrase that you said was “I don't identify as a patient in my most humble of opinions. The whole point of going through rehab is to no longer be a patient. Unfortunately, the ever-shortening rehab stays of today will be keeping people in patient status for much longer than necessary.”

00:25:52 Sarah

That's just my opinion.

00:25:55 Shonali

So I want that actually recorded because I think that we talked a lot about that.

00:26:00 Sarah

Well, I've I've, yeah, and I've always felt that, like the whole, you don't go through rehab, so you can be the best at rehab. You go through it so that you are able to figure out how you are going to lead the life you want to lead. And that's not to say you're not going to have to keep coming back to medical care, but I feel like it would be nice to have a say. And I find whenever I get health insurance I always choose one that will allow me to go outside, find outside providers because there's just not the knowledge of spinal cord injury, just isn't there ubiquitously, unfortunately, and so. But yeah, I do believe there is a time when we should not be patients anymore and but I think the medical system sort of trains you to be a a good patient. And and not necessarily a person.

00:26:55 Alan

Just just in terms of simple language, getting people to use people first language is to me culturally very important and very challenging. I deal with it all the time as a journal editor, we're having to fix language all the time. Oh, yeah.

00:27:12 Sarah

Really? Wow, even now.

00:27:12 Alan

Oh, yeah.

00:27:14 Dave

Some people don't like, you know, as you alluded, being called patients. Some people don't like being called consumers. Some people don't like being called the clients.

00:27:21 Sarah

Some people don’t like being called consumers? Really?

00:27:23 Dave

Some people don't like - oh yeah.

00:27:25 Sarah

That's so interesting.

00:27:28 Shonali

That’s why I’m like, I'm not really sure what the right answer is here yet.

00:27:30 Sarah

I don't think there is one.

00:27:31 Alan

I don't think there is.

00:27:32 Sarah

I think that's what you're finding is there isn't one, and that's why you have to know the community you're working with.

00:27:37 Dave

Yeah, terminology changes, right? We used to be called the handicapped.

00:27:40 Sarah

The afflicted. Turn of the century.

00:27:42 Alan

But it's it's the same same way when someone without a disability, you want to ask them how they want to be referred to, right? You want to be referred to as Allen or Mr. Jetty or Dr. Jetty. Well, there's no right or wrong. It's just what you're comfortable with. and I always appreciate it when someone asks me that. It doesn't happen very often. People make assumptions.

00:28:10 Sarah

Isn’t that funny though, because I don't think anybody is ever going to be offended when you if you ask them. How you would like to be called and yet we don't.

00:28:15 Alan


00:28:18 Dave

Well, my my daughter's 13 and that generation now calls parents by their first names. It’s automatic.

00:28:28 Alan

Oh is that so? And does she call you by your first name?

00:28:28 Dave

She calls me any... she's she's so well behaved she can get away with anything for me. You know, she calls me bro. She calls me dude. That's just the relationship we have. But I have a lot of hope for the next generation, I think we'll see a shift.

00:28:50 Shonali

They’ve got a lot of battles to fight, that generation.

00:28:55 Sarah

I do you know? And. And I do actually think, you know, to Dave's point, I do think younger healthcare providers are different. They're coming at this from a more diversity perspective. They are more like they want to know and I think that's a good change.

00:29:16 Shonali

So the right answer ends up being that you should approach with humility, ask about people's preferences, and remember that we all have facets of our identity that make us unique. Although that doesn't really help me choose my words when writing grant applications. So now let's get back to the sci-fi.

00:29:40 Alan

Given the methodology of how sci-fi was developed, one of the unique features of such an instrument Is that you can use it in any setting where care is being provided. In contrast to most traditional measures where you have to use a different tool or measure in different settings. But if you develop a tool like sci-fi was developed you may be asking different questions, but you're going to generate the same underlying metric regardless of where the setting is and how the person is functioning. That's a unique and I think very important feature of this type of instrument. It's not unique to sci-fi, but it's unique to this type of instrument. I think that's where the field needs to go if we're going to understand trajectories and prognosis, then we have to be able to look long term at what goes on in the lives of people with disabilities and you can't do that if you keep changing the language that you use every time. So that I think opens real possibility.

00:30:54 Shonali

I'm looking a lot today at Spaulding and what we're using to measure outcomes here and a lot of the measures that are required for regulatory purposes. So now we're using what we call Section GG, part of the care tool that replaced, the former FIM. But a lot of clinicians are also feeling like that scale is different from what they use historically, which is like just a traditional Min, Mod, Max or 25, 50, 75 percent function. Those are more global scales, but I guess my question is what's the future of those types of things that are sort of more generic scales as opposed to getting to something more like the sci-fi? Maybe they're just completely different?

00:31:50 Shonali

OK, quick pause again here because I did a bit of jargony rambling in that question. Basically, the way therapists evaluate function is on a generic scale. Does the person need minimum assistance? Are they doing 75% of the work themselves, or do they need maximum assistance? Ie are they doing 25% of the work themselves? It's the same concept for the documentation required by the federal government in something called Section GG of the Care Tool. Generic levels of assistance that are applied to all types of people. So where's the role in all of this for something like the sci-fi?

00:32:34 Alan

Well, the care tool is a really interesting example that you bring up. In my opinion it has been developed and it's being used because we're required to do it. So the tail is wagging the dog. It it makes it difficult for clinicians who want to do a richer assessment. You end up having to do it in addition to the required assessments. And that's not only a criticism of the care tool people felt that way about the FIM, which has been used in rehab for decades, and that also was required, and it also had its strength as well as its limitations. You know, it's a short form it, it has floor and ceiling effects and for some purposes it's it's not sufficient. But as long as the regulation required it, people collected it. Now it's the care tool. So, I'm hoping policy will change and allow clinicians to make their own decisions about how best to evaluate them the impact of their care.

00:33:52 Shonali

Something we've talked about a lot is getting the clinicians and the the people from the communities to be the policymakers and get on those seats and make some of those decisions. Part of my mind is like, you know, working with the government and the policymakers to decide what are the right tools we should be using to assess outcomes. If care tool is not the right one, then what is, and how do we work with together to get to a point where we're evaluating outcomes the way that we think is clinically appropriate?

00:34:21 Alan

In my experience, policymakers are very conservative. And there are techniques such as the ones that we used to develop the sci-fi, which are not incorporated into the care tool. They're available. They were offered to the government and they weren't acceptable because they were seen as too new and too innovative.


 So it's not used for regulatory purposes, but it was the development was funded by the government is that right?


Right, yeah, most of that course is always the challenge. One part of the government will feel one way and another part will feel another way, and sometimes it's the same organization. I I spent close to 10 years working with the Social Security Administration and developing a new generation of assessment tools for work disability, totally funded by the Social Security Administration. Lots of money. And we have yet to be able to convince the Social Security Administration to use the tools that they funded the development of.

00:35:30 Sarah

So there you have it. The tail wagging the dog.

00:35:34 Alan

Well, it is interesting. I mean, when you develop innovative tools, assessment tools, they're out in the marketplace. So anyone can use them. And so you sometimes it's surprising who picks them up. Europe has been very interested in the work that Social Security has funded, because they have a very different policy environment for work disability. So they've picked up the tools and they're using them. In this country, not so much.

00:36:08 Shonali

So that's it for the sci-fi. But we can't live without talking a little bit about the policy implications. So in this last section, you'll hear us chat about some recent legislative topics.

00:36:24 Shonali

Sarah, you’re Commissioner on the Rhode Island Governor's Commission for People with Disabilities. So what role do you think measures like this play in guiding state-run programs like that?

00:36:35 Sarah

Well, I wish it was a cleaner path and and I think. It's nice to have… having the data matters because the data can be shared and used, but the data has to be understook first. And then I think translated to politicians.

00:36:56 Dave

I mean, based upon what we're discussing in politics, I think we're farther along than we ever have been and we're getting slowly gaining ground as well as government entities and individuals with disabilities that are politicians and government employees in in higher positions than we've ever had before. So I think we're we're kind of chipping away, but it's it's slow progress.

00:37:26 Sarah

And you know some of this other policy stuff like, what has been spearheaded by Mass like the wheelchair lemon law, for example, the the new law that is being passed about the amount of time that DME companies have to fix a chair, right? You have to call your DME company, and say my chair is broken. You have to schedule time and they usually say to you, oh, we'll be there in a couple of months.

00:37:50 Dave

What happens is your chair break down and you need services you contact the vendor. The vendor then comes out to see what's actually going on, and that may take a week or or longer, but from what I understand is the vendors no longer reimbursed for travel. So that's one issue. And then when they do get there and see what's wrong with the the chair, they need to order the parts. And they only can order the parts when the insurer says yes, we'll pay for those parts. So there's another delay and then whether they get the right parts you know, shipped to them.

00:38:31 Sarah

Seriously, that's it's a 5050.

00:38:32 Dave

It's another issue. I mean they there are plenty of people who have said they showed up and they had the wrong parts and it was it didn't work. So back to the drawing board, but I actually spoke to a representative of a vendor a week or two ago and he said if they could get free authorization for the parts, they can expedite that process much more quickly.

00:38:58 Sarah

I think that you know, back to the original question of these measurement tools and how does it play out in policy? I think it gives you the data that you need to push for something, yeah.

00:39:10 Alan

And measurement helps you evaluate whether or not efforts are really effective.


And if they are, more policy in that direction.

00:39:21 Dave

Right. Yeah, we, you know we are at a point as well, as Mass General Brigham is behind a lot of these initiatives, so. So we just had a letter signed off by Mass General Brigham about the wheelchair warranty bill, to extend it from a year to two years.

00:39:38 Sarah

That's really great.

00:39:39 Dave

So we're at a higher level than we've ever been in terms of advocacy.

00:39:43 Alan

And it's incredibly important it is.

00:39:45 Sarah

Right now? It it's terrible the amount of time I have people. I know I have friends who are stuck in bed because their chair isn't being fixed and they don't have any other way to get around. And it's months. It's not a couple of days, it's months, and there's nothing, there's nothing! There’s no law, or anything to support the person that’s stuck. And it’s just wrong. The piece that these, many of these people who don't live with disability, you know, you use your chair every day it's going to break in some way, shape or form. Your who knows what's going to happen. Usually it's tons of hair in your casters or in a power chair it just stops working and that could be all kinds of wires and things going on, but like I can't get around, you know, this person cannot move if they don't have access to their chair. And there seems to be this real disconnect between the administration people and and me for example, like in my life and that my life has value and my time has value. Laying in bed might seem perfectly appropriate for for some administrator. But it's not OK with me, and it's not OK with most people I know who live with spinal cord injury. They want to get out and move around and and live their life. I don't think you're asking for too much to ask for good customer service and I think one of the issues is that I'm not really the consumer. My insurance company is the consumer.

00:41:31 Alan

And well, it’s downright dangerous.

00:41:33 Sarah

Like, if you're sitting on the wrong cushion? Because the wrong cushion was ordered and you don't have a choice, you sit on the wrong cushion. Now, you might develop a pressure sore that could turn into, a very lengthy involved thing….

00:41:42 Alan

We saw the National Academies of Medicine. They did a study looking at whether or not airlines in this country could be made accessible for people in wheelchairs and and we learned from testimony from many, many people with who are wheelchair users that they don't dare try to fly because of the fear of the chair being broken and how long it would take to to get it fixed. And what they would do at at their destination, if it's broken, they're stranded and it has a huge impact and and measurement is really critical to show the magnitude of the problem. It's very difficult to know the magnitude of the problem because so many people with disabilities who are wheelchair users are invisible because they don't travel because of the fear of just what you're talking about. And those data can be very helpful in developing public pressure to to change like for example, airline interiors. We learned it's very feasible to do it.

00:42:52 Sarah

That's good. Yeah, I've heard. I've heard some here and there. I've been reading about, they're thinking about making you know, so that you can go on the plane in your chair.

00:43:01 Alan

And walk in, yes.

00:43:01 Sarah

Oh my gosh, that would eliminate so much hassle. All those transfers… waiting till the end till everybody gets off and then hoping, hoping that the people are going to come and help you off.

00:43:14 Dave

And that your chair will show up, right?

00:43:15 Sarah

I've had I've had pilots have to take me off the plane because the person hasn't showed up and the whole flight crew is waiting around and they can't leave until we leave.

00:43:24 Alan

We know it's feasible to do. It's expensive, but definitely feasible to do in in most crafts that are used.

00:43:35 Shonali

There's actually an app I just came across that is started in Canada called Access Now, have you seen this app?

00:43:40 Sarah

Ohh no.

00:43:41 Shonali

If you guys are interested.

00:43:42 Sarah

Access Now.

00:43:42 Shonali

So it's kind of like a Yelp for accessibility where you can sort of rate all of the different locations.

00:43:46 Alan

Yeah, that's great. What's what's it called?

00:43:49 Shonali

It's really Access Now I just downloaded the other day. It's not super accurate for Boston, but I think that's because it started in Canada. 

00:43:59 Sarah

Is it Crowdsourced?



00:44:01 Alan

Well, you know Google Maps wasn’t very broad in the beginning either huge gaps.

00:44:06 Sarah

We didn’t have Waze. There was once a time, if you can believe it, we didn't have Waze.

00:44:13 Shonali

Exactly. Yeah. So look into it.

00:44:13 Alan

That could be so useful.

00:44:23 Shonali

We'll end on that high note, very pleased with myself that I was able to share a new tool with Alan and Sarah. Big thanks to both of them for joining us and to you for listening. If you've enjoyed this podcast, please know that liking, subscribing, and sharing is essential to sustaining our work. The Finding Strength production is a collaboration between the Rehabilitation Outcome Center at Spaulding and our Model Systems: the Spaulding Harvard Traumatic Brain Injury Model System, the Boston Harvard Burn Injury Model System and the Spinal Cord Injury Model system, all funded by the National Institute on Disability Independent Living and Rehabilitation Research. The material presented here is for general information purposes only.

00:45:16 Shonali

Is it right that you were recently retired? Is that the right word? My dad just retired for the 2nd time, so I don't….

00:45:24 Alan

I I still use the phrase partially retired. I will be fully retired at the end of 2023.

00:45:32 Shonali

What was your first PT job?

00:45:36 Alan

My first PT job? I ran a rehab program in a skilled nursing facility on Grand Island, NY.

00:45:45 Shonali

You RAN the program as your FIRST PT job?

00:45:47 Alan

Yeah, yeah. In retrospect, it probably wasn’t the best decision in the world, but that is what I did.

00:45:58 Dave

I’m sure you learned a lot.

00:45:59 Alan

I did learn a lot. It was Immersion therapy. But that was my first job.

00:46:03 Dave

Well, you know, it's funny. I I never even knew physical therapy or occupational therapy existed until I was injured. When I played every sport growing up as a kid.

00:46:13 Alan

But you must not have been injured, though.

00:46:15 Dave

I never.

00:46:17 Alan

I was introduced to physical therapy when I, as an 11-year-old, I decided I could fly it and it didn't work.

00:46:27 Sarah

Oh no, what did you jump out of, a tree?

00:46:28 Alan

I fell out of a treehouse. And I shattered my femur and broke both arms.

00:46:36 Sarah

That's learning the hard way.

00:46:37 Alan

Yes, yes, I was a slow learner.