STAR Point Transcript - Gillette Children's Specialty Care Clinics
Guests: Ronna Linroth and Patty Bahr
Host: Earle Harrison
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From the depths of ingenuity to the heart and soul of assistive technology for people with disabilities, STAR is a System of Technology to Achieve Results!
STAR Point does not endorse or recommend any product, individual or agency. The information expressed on STAR Point is educational in nature and does not imply endorsement by STAR's funders: the National Institute of Disability and Rehabilitation Research or the State of Minnesota.
Transcript begins here:
Hello and welcome to another edition of STAR Point. STAR is a project of the Minnesota STAR Program, a system of technology to achieve results. Today we have two very special guests in the studio from Gillette Children Specialty Healthcare. Let's begin by having you introduce yourselves, and let's go ahead and start with you, Ronna.
RL: Thank you. My name is Ronna Linroth, and I'm an occupational therapist by training. I've practiced for about 25 years with adults with disabilities in the areas of mental health and various types of physical disabilities in community-based programs as well as in some traditional clinical settings. I'm currently the manager of Gillette's Adult Outpatient Services and manager of the North Outreach Clinics.
PB: And I'm Patty Bahr. I work at Gillette Children's and also Gillette Technology Center. My background is in engineering. I have kind of a dual role at Gillette. One is rehabilitation engineering, where I use my engineering background to work closely with therapists both at Gillette and in the community. So when I'm working with power mobility, I'll work with an occupational therapist and a physical therapist; when I'm working with computer access, I work closely with an occupational therapist; when I'm working with augmentative communication, I'll work closely with speech-language pathologists and occupational therapists.
My other role at Gillette is supervising the Mobile Outreach program, which is one of the areas that we're going to focus on today. First, I'd like to tell you a little about Gillette Children's Specialty Healthcare. Gillette has been around for 105 years. We were the first publicly-funded hospital for children with disabilities in the United States. That gives us a lot of history, and today we've grown to a point where we have five locations. We're based in downtown Saint Paul, where we have our outpatient clinics and our inpatient units. Our outpatient clinic has over 65,000 visits per year. Our inpatient unit, we see over 1,200 people per year.
We do surgeries, a lot of orthopedic surgeries on our inpatient unit. We have doctors, nurses, social workers, recreational therapists, physical therapists, occupational therapists, speech-language pathologists, the Assistive Technology Department. All of that is in downtown Saint Paul.
We also have Gillette West, which is in Minnetonka, which is an outpatient clinic with physicians, nurses therapists, some assistive technology. We also have Gillette North, which is in Duluth, and Ronna is going to talk a little bit about that later.
We also have Gillette Technology Center, which is where our Mobile Outreach Clinic is based, as well as our Lifetime Specialty Care Clinic is based. And that's our fifth location, is the Mobile Outreach Clinics, which are all over the state of Minnesota. So today we're going to focus on the services that are provided at Gillette Technology Center, the Gillette Mobile Outreach Program, as well as Gillette Lifetime Specialty Care Clinic.
EH: Gillette started out providing services to children, is that correct?
RL: That's correct.
PB: That's correct, uh-huh.
EH: Why did Gillette Children's Specialty Care decide to begin providing services to adults?
RL: About four years ago, it came to Gillette's attention that Gillette's outpatient services were seeing a number of adults, and last year about 18 percent of the outpatient visits were adolescents over the age of 16, and adults. And Gillette felt very strongly about their expertise as pediatricians in addressing pediatric services. They felt strongly about having a solid pediatric medical home, and mixing the populations of children and adults wasn't very satisfactory in the sense that adults desire to be treated in an adult environment, and it's very difficult to maintain both a strong pediatric and a strong adult environment. And so the decision was made to look for a way in which to provide the specialty care services that adults needed and in an adult setting.
Some of the things that they have been working on is providing some isolated clinic time downtown where only adults were seen, and still there is that mix of adults and children. Gillette's Lifetime Specialty Care Clinic addresses the specialty needs of adults, not the primary care needs. We really want to help to build capacity for addressing the -- the primary care needs in people's medical home within the communities in which they live with the primary care physicians that they see.
Studies have shown that adults with disabilities are not getting their specialty care needs met. They're falling through the gaps for various reasons. One is that primary care physicians aren't necessarily comfortable with their disability, and many of the pediatric programs either stop providing services at the age of 18 or 21, or people feel that -- there's a perception that they're not going to be welcome in that pediatric environment because of their age. Gillette's Lifetime Specialty Care is addressing the needs for adults who have childhood-onset conditions, and we also want to help build capacity with the primary care providers by linking and creating a bridge about their specialty needs as they relate to some of their primary care needs. And by creating a dialogue, we hope to be able to serve people better.
EH: How are services either different or the same at Lifetime Specialty Care Clinics?
RL: When we looked at the needs of adults, we expected that we would see probably three groups of people that come through our door. One is those groups of adults who have been seen at Gillette through their childhood, we know them well, their specialty care needs have been addressed well, and want to continue with Gillette's services.
The second group are folks who may or may not have been seen in a pediatric specialty service provider but have not been seen for maybe 15, 20 years for their disability. They may be seen in primary care for colds and flus and immunizations and that kind of thing, but not for their cerebral palsy or spasticity-related conditions, and they want to know what has changed, what is offered now in the medical professional that wasn't there for them before.
The third group are folks who maybe have a good handle on their disability but have experienced some change. It may be due to trauma. And, frighteningly, adults with disabilities have a disproportionate amount of trauma. They are -- in part in Minnesota, because sidewalks and curb cuts don't get cleared in the snow, people are driving in their wheelchairs on the street, and they get struck because of the icy conditions. People fall. For folks who have already compromised joints and musculoskeletal situations, carpal tunnel and repetitive stress injuries are also very high. We wanted to be able to address those needs for people on, perhaps, a one-time basis, where they come to see us, we do kind of a triage, we figure out what part is the cerebral palsy or the underlying condition, and then work with their primary care providers or other specialty providers to figure out what's the best way to approach that.
So, looking at the needs of those folks that would be coming in to us, we felt that we really needed to have an integrated model of service. So when a person comes for a visit to Lifetime Specialty Care, it's very thorough. They're seen by social services. We make sure that we get all of their accurate information about where they're living, do they have a primary care provider. If they say "no," we'll see them but then work with them to get a primary care set up within the first month.
Then they're screened by occupational therapy, physical therapy, speech therapy. We find out, do they have a community-based therapist that they're working with, do they have a program that meets their needs? They're seen by orthotics and prosthetics, by seating and positioning, they're assessed by the nurse and then they see the physician for the physician visit. And by the time the physician sees the patient there's been a thorough summary from each of those aspects of that person's life and how they're functioning in the various environments that they have to function.
So a visit at Gillette Lifetime Specialty Care Clinic usually runs between an hour and a half to two and a half or three hours, and if they decide on that visit to have their seating and positioning done or an orthotic created for them, that visit may be even longer.
EH: And Lifetime Specialty Care Clinics for adults has been in existence since October of 2001, is that correct?
RL: That is correct.
EH: What have you learned in your last six months of operation?
RL: I would say that what we thought was going to happen has been, in part, confirmed, that we're seeing a number of adults who haven't been seen for their specialty needs for five, ten, fifteen, even as much as thirty years, and come to us with the complaints that they're not very efficient in their moving anymore. Their walking is slower or more effortful. They're not able to bend over and pick up. They're having more pain and tingling in their arms or in their legs and are wondering if that's related to their cerebral palsy or if there's something going on.
Until about five years ago, the practice of addressing a spastic muscle really was that you shouldn't strengthen it for fear that you would be strengthening the spasticity, and we've learned in recent years that it's just not good to allow anybody to decondition and that they need to exercise, that they need to be doing strengthening, and that when you strengthen a spastic muscle, you need to strengthen both sides of that joint, and a little more so on the nonspastic side. So the exercise programs that people may have been taught are no longer the best for them, and they need to add some strengthening or fitness components to that.
In addition to that, we expected that we would see a fair amount of depression, particularly if people were experiencing age-related changes and not sure what that meant for them, and the uncertainty of that was frightening for people. So if we can give them a realistic idea about what to expect with aging overlaying the disability and give them some control on how they can manage those changes, we expect that we'll see some of that depression lifted.
The other thing is that the side effects of some of the medications that they're given by primary care physicians in addition to the medications that they're taking for their physical disability -- let's take, for example, Baclofen, which for some folks is a great spasticity management tool but may have a depressive side effect for some folks. If you're a woman and you're taking a birth control pill that also has a depressing side effect, there may be a doubling of that effect and creating a depression that doesn't need to be there, and a good look at those medications and how they interact is a helpful thing.
The third is that a surprising number of adults -- and maybe not so surprising -- have not had their vocational needs addressed very well. In part, I think that's because the advances that assistive technology has brought to the possibility of employment and higher education for people with significant disabilities have been more so in the last ten years. And these folks were sort of aged out of school and out of programs, maybe went through vocational rehabilitation when the assistive technologies were not available. So now they would really benefit from being looked at for what types of interventions can really help them perform more efficiently, longer, or doing tasks that they hadn't previously been able to do.
EH: And can you give us some examples of how assistive technology fits into this model of services provided by Lifetime Specialty Care?
RL: I would love to, Earle. Thanks for asking the question. For a person who is not able to perform their self-cares -- dressing, personal hygiene, transferring in and out of a tub or a shower -- there are assistive technology devices that can address those. Those are fairly well known. You can find off-the-shelf catalogs in your local pharmacy, but finding the right device for you may require the intervention of a professional who can look at what your functional ability is, what the demands of your environment are, what kinds of tasks you have to perform, and then what are the features of different devices. Then we help that individual as an adult to make their decision about what's going to work best for them.
For folks who have communication difficulties, who don't have clear speech, the advances in augmentative and alternative communication provide many, many answers. And our approach at Lifetime Specialty Care, as well as our Outreach Clinic, is to give people hands-on experience so they can demonstrate to us what their you capabilities are. In many areas people have been prohibited from having the opportunity to demonstrate their ability, because other folks decided, based on an IQ or based on another person's perception, that they would not be able to perform, and so they were never given a chance to do that. And our model at Lifetime Specialty Care and our Outreach Clinics is really to provide people with an opportunity. So we've invested significant dollars in having equipment on hand for people to use.
EH: You're listening to STAR Point, a project of the Minnesota STAR Program. Today's guests are Patty Bahr and Ronna Linroth of Gillette Children's Specialty Healthcare. We're going to take a short break, and when we return, we will continue our discussion with Patty and Ronna.
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EH: Welcome back. You're tuned to STAR Point, a project of the Minnesota STAR Program. My guests are Ronna Linroth and Patty Bahr of Gillette Children's Specialty Healthcare.
Ronna, please continue to talk to us about the services available at Gillette.
RL: In the areas of seating and positioning, Gillette is known for its quality in custom seating. We also [know] very well of those commercial products that are out there and how we can integrate those pieces with a custom sitting in order to best accommodate a person's needs -- things like joy stick control or sip and puff, computer access, using a head pointer or speech. We have those things all available for people to try.
EH: I see here that you're also a manager of Gillette's North Clinics. I'm curious as to what that entails and where these clinics are located.
RL: About two years ago Gillette opened a clinic at the Lakewalk Center in Duluth with Dr. Kevin Murphy. Dr. Kevin Murphy is board certified as a physical medicine and rehabilitation specialist. He has specific interest in the impact of aging on people with chronic conditions. He has researched and written on the subject and continues to address those age-related difficulties for people with chronic conditions.
Dr. Murphy is based at the Gillette North Clinic site in Duluth that also covers nine sites across the region. We're now adding occupational, physical and speech therapy to that setting. We also have orthotics, prosthetics and seating and positioning available. Our Mobile Outreach van also visits up there, so there's access to communication devices, computer access and the other things that come on Mobile Outreach. And Patty Bahr, who's here today, supervises the Mobile Outreach Program and could tell you more about how those vans are equipped and how those services are acquired.
EH: Great. Patty, do you want to go ahead and address that?
PB: Sure. Mobile Outreach, it's really a mobile assistive technology lab. There are two parts to the Mobile Outreach Clinics. One is the mobile workshop and the second is consultation with state-of-the-art assistive technology equipment and devices.
For the workshop part, we bring all types of hand tools -- grinders, saws, materials commonly used to make or modify many types of assistive technology. The workshop part allows us to take models, measure, fit or repair many things that make daily living easier for people with disabilities. The types of things that we typically do on outreach are work on special seating systems like Ronna was talking about, many times in wheelchairs, but also in office chairs, orthotics or braces and prosthetics.
The consultation with assistive technology is the other part of our clinic. We can take, as Ronna said too, to augmentative communication or speech devices, different ways to access a computer -- powered wheelchairs, those types of things -- with us, and then we work with the therapist in the community to match the features of the equipment to the needs of the people with disabilities while we're out there on the road.
EH: So where do you go with the Mobile Outreach Clinics, it is actually mobile, is it not?
PB: Yes, absolutely.
EH: Okay.
PB: Absolutely. We go to 17 different sites with our mobile assistive technology labs, and then we go to many different sites with Dr. Murphy. So when Dr. Murphy goes to different sites in the northeastern part of Minnesota with Gillette North Clinics, he takes an orthotist with him. The part of the outreach clinics that I'm going to talk about are the mobile assistive technology clinics, and those sites are in Roseau, Redlake, Bemidji, Brainerd, Alexandria, Fergus Falls, Detroit Lakes, Willmar, Marshall, Worthington, Windom, Austin, Mankato, Owatonna. I think I've got them all (laughing).
EH: Okay. Well, how do you -- how do you determine what's a -- a good candidate for a site? I mean, how do you -- what's your criteria?
PB: Well, it really depends on funding. We try to serve people all over the state, and we're available to serve people all over the state. It goes back to funding. We need to have someone, essentially, sponsor us to come to a city.
EH: Are these typically medical clinics or...?
PB: We're funded in many different ways. Minnesota Children with Special Health Needs pays for some of our clinics. The STAR Program used to pay for many of our clinics, and the Community Action Networks, now the Assistive Technology Networks, in the different areas of the state, they pay for some of our clinics, United Ways. Any group that wants to fund us to come to a site, we'll sure talk to them and we'll try to come to that site.
EH: And how do you get all that equipment to the clinic site?
PB: Well, right now we have two trucks. We basically don't do any work in the trucks. The trucks are used to haul our equipment. We've got workbenches with all types of hand tools -- grinders, saws, all that equipment that's needed for the mobile labs. And then we've got other carts that are filled with literature and another cart that's filled with communication devices, alternative access to compute devices, electronic aids for daily living, powered wheelchairs, that type of stuff.
So we get to a site and we unload our trucks and we set up wherever people have space for us. That might be in a PT/OT gym; it might be in the gym of a church; it might be in a medical clinic. We've been in VFW halls. We've tried libraries. Libraries don't usually like us, because we're loud and we make a mess (laughing). But we've been in conference rooms -- basically, wherever people have space that we can set up and make a mess and be loud and that's accessible.
EH: Okay. So that's the criteria. You've got to be able to make a mess and be loud.
(Laughter.)
PB: And accessible.
EH: Okay, and accessible. That's the most important.
PB: Uh-huh, uh-huh.
EH: Okay. And how long has the program been in existence?
PB: Well, we start out in 1985, and our manager, Dave Wilkie, used to work in the seating department, and he met people from all over the state, and they kept teasing him that he should come to them, it would be a lot easier for them if he could see three to five people at their site, say, down in Worthington or Windom, and he finally took them up on it. He loaded up the sidecar of his motorcycle with tools and went down to Windom, and that was the beginning of the Mobile Outreach Program.
EH: Wow.
PB: So in 1985 it was -- it started with a motorcycle and a sidecar.
EH: And the libraries really hated them.
(Laughter.)
PB: Yeah. From there we moved to a contract with Minnesota Children with Special Health Needs, where we provided orthotic and seating needs to children with disabilities, and then from there some of the regional treatment centers contracted with us to provide services to people that were in the state homes. And shortly after that, in 1990, the Minnesota STAR Program contracted with us to add the higher tech assistive technology to the program, and that really got us going with the computer access augmentative communication powered mobility services, and it's taken off from there.
People have opened their arms in the community the fund us to come to their sites. For example, Willmar, the Rice Health Foundation and the Rice Memorial Hospital there have funded our clinics and their -- they've raised money through different fundraising programs so that we can come for, we're hoping, many years to come.
EH: So, Patty, how do people contact you about clinic sites, setting up appointments, how to contribute to the program, that sort of thing?
PB: Well, we have an 800 number. Once we've set up a clinic at a site, people can call in on our 800 number, and that's 1-800-578-4266. And, typically, we'll set up an appointment for about an hour at a time. If people wanted to call that 800 number and talk to us about setting up a clinic site in their area, we can certainly do that as well. That comes into our main switchboard at the Gillette Technology Center, and you can talk to me or you can talk to Dave Wilkie or Debbie Day.
And if you wanted to contribute to the program, we're, of course, always looking for funding. We are grant-funded, and anytime that people want to contribute to the program, that's going to allow us to bring more equipment to the different sites or go to more sites. So you can do that by calling us on that 800 number as well.
EH: Okay.
PB: That 800 number for Mobile Outreach and the Gillette Technology Center is 1-800-578-4266. I do want to tell you, Earle, that on our Mobile Outreach Program we see people of all ages, and we've seen people of all ages there on our Mobile Outreach Program as well as at Gillette Technology Center since we opened in 1990. At the tech center is also where our Lifetime Specialty Care Clinic is located, and, of course, we see people of all ages through that clinic as well, and Ronna is going to tell us more about that.
RL: At the Lifetime Specialty Care Clinic, it was designed for adults, and so we see adolescents from the age of 16 and older and adults who have cerebral palsy-like conditions. Those would be conditions where spasticity is the symptom that creates the most difficulty in people's lives. In addition to that, at our North Clinic out of Duluth at the Lakewalk Center -- I'll give you the 1-800 number there as well. So if you're interested in seeing Dr. Murphy or having your therapies local -- occupational, physical and speech therapy -- and to see our orthotics and prosthetics and seating and positioning specialists at the Duluth North Clinic, the 1-800 number is 1-800-903-7111, and you can schedule appointments there to see Dr. Murphy, to receive therapy, or to get scheduled for the Mobile Outreach van when it comes to Duluth.
The Gillette main website is at www.gillettechildrens.org.
EH: You are listening to STAR Point, a project of the Minnesota STAR Program. Our guests have been Ronna Linroth and Patty Bahr of Gillette Children's Specialty Healthcare. I thank both of you very much for taking the time out of your busy schedules to join us today.
RL: I want to thank the STAR Program for providing this opportunity for us to share information about assistive technology and ways in which Minnesota and people in the region can access our services. So thank you, Earle, and thank you to the STAR Program.
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From the depths of ingenuity to the heart and soul of assistive technology for people with disabilities, STAR is a System of Technology to achieve results!
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You've been listening to a broadcast of STAR Point, a production of the Minnesota STAR Program, a System of Technology to Achieve Results. If you would like to provide feedback, become a guest on our program, or if you'd like to find out more about the STAR Program, please visit our website at www.admin.state.mn.us/ assistivetechnology. My name is Earle Harrison. Thank you for listening.