Transcription of Jill Johanning for the show Aging in Place #208
Lisa: This is Dr. Lisa Belisle. You are listening to Love Maine Radio. Show number 208, Aging in Place, airing for the first time on Sunday, September 6th, 2015. How do we help older people continue to live fulfilling and productive lives? As a state with a rapidly aging population, Mainers are working to answer this question. Today, we explore the special needs of older individuals and other individuals who are differently abled with Jill Johanning and Chris Delenick of Alpha One. We also speak with Kate Adams of Aging Excellence, a non-medical in-home care agency that helps older people age in place. Thank you for joining us.
As part of being a doctor, I am privileged to spend time with families who are dealing with pretty major life circumstances. One of these is aging. In fact, I spend a lot of time with families who are caring for elderly parents. What is wonderful is to see when it works out so that people are able to age in place and age in the homes that perhaps they’ve lived in all of their lives because it seems to have a very positive impact on their health. However, I’m not sure that as a society, we’re quite sure how to deal with this yet. Today, we’re going to speak with two individuals who I think have some good ideas for us. We have Jill Johanning and Chris Delenick who are from Alpha One. Jill is a Maine licensed architect who specialized in accessible and universal design, and Chris is an occupational therapist and an independent living specialist. So great to have you in here to have this conversation with me today.
Chris: Thanks for the opportunity.
Jill: Thank you for having us.
Lisa: I’m interested in why it is that this would become your field? It seems like … Obviously, Maine has one of the oldest populations in the nation and we are all going to get to the place where we need the services that you’re providing. Why did each of you choose to focus on this?
Chris: For me, it was similar to what a lot of people experience in the disability arena. It was personal. I was in a car accident when I was young, eighth grade, and had to do some rehabilitation and really was interested in what the physical and occupational therapists were doing. Did a lot of volunteer work at the local hospital and really latched onto occupational therapy as something I saw a lot of potential in. That was my entree into the occupational therapy world.
Lisa: How about you Jill?
Jill: I actually came home to Maine my first summer from college and wanted to do something different and got involved with Pine Tree Camp, which is a camp for people with disabilities. I just haven’t left since, just seeing the need that we have in the architectural environment to make the facilities accessible for everyone. It’s just been something that I fell in love with and kept on doing it.
Lisa: Describe for people who are listening what Alpha One is.
Chris: That’s a very good question. Alpha One is Maine’s center for independent living. Centers for independent living are in every state. Most states have multiple, we have one. Alpha One serves consumers in South Portland, Bangor and Presque Isle through the offices but we cover the entire state. We’re really focused on increasing the independence and enriching the lives of people with disabilities.
Lisa: When we’re talking about aging employees, this becomes relevant to the whole disability idea because we’re all at various stages of ability or disability over the courses of our lives and it’s not just because of aging. It’s because of things that might have happened or things we might have been born with. You’re just trying to make it possible for people to live their lives.
Chris: I think one of the key things that we look at is the dignity of risk. The same opportunities and the same circumstances that someone who does not have a disability is provided or afforded, extending that to people who do have a disability to make the same choices, to live their lives as independently as you or I.
Lisa: Jill, as an architect, what types of things are you able to offer to people so that they can live independently in their homes or even live with perhaps other family members in their homes, no matter what age they might be or what their ability levels might be?
Jill: I hope what I bring is choices and options. A lot of times, people think that they have only one option to do this or that to their home. Based on what their budgets are, we try to give them different choices to let them make the decisions of what’s going to be best for them. Everybody’s different, every home is different, and just helping them brainstorm ideas and let them know what products and resources are available so they can make those choices whether it’s today or tomorrow or in the future. They know what’s out there, what’s there for help.
Lisa: When I’m thinking of things that people might need, I’m thinking of ways, for example to get into their house like a wheelchair ramp perhaps or not just a wheelchair ramp but just a ramp because sometimes stairs are difficult. I’m thinking about handles on doors that can be opened by people who aren’t quite as strong. There are also maybe larger architectural and structural things that need to happen, widened doorways or changes in the layout of a room. Talk to me more about that.
Jill: That comes back to budget. In looking at doorways for example, if there’s space, the cheapest option is just to switch the hinges to something called offset hinges or swing away hinges. If you just need an extra inch or two, just to help get a little more space for a rollator or a wheelchair, that’s the cheapest, easiest thing that anybody can do. If that doesn’t work because of space or the door is just too small, then that’s where widening the door, having a contractor come in and actually take the trim off. Now a little bit more cost, but it’s going to get you a little bit more space. Things like that we could look at based on what’s existing for the home, how old it is, and then choosing, can you afford to do just the hinges or can you afford to do the whole door frame. People have that choice, say let’s try it with just the hinges or let’s get a carpenter in here and actually fix the door for example.
Lisa: What are some of the other things that people need to consider when you’re talking about someone who has a disability or perhaps somebody who is aged and just has more generalized weakness or some sort of medical issue.
Jill: [Part of it 00:08:23]’s getting into the home, getting in and out, you’re already mentioned with the ramp. Getting through the doors and then the bathroom is really the place where most accidents happen and where everybody should have the choice to go to the bathroom, bathe themselves safely, comfortably. That’s the biggest challenge, is the bathroom because typically Maine old homes are small, tiny, not very friendly.
Chris: They may not even have a full bathroom on the first floor if it’s a multi-floor house. Bathrooms is where we see a lot of requests for help in terms of looking at design, looking at layout, looking at equipment that might increase independence.
Jill: Changing the tub to a shower, changing the toilet.
Chris: Ideally, replacing a tub with a shower that is as close to a zero threshold as possible. Not even a lip. If someone had to use a device that needed a roll-in, that quarter of an inch which a lot of shower floors have can be a barrier. We look at having as close to zero as possible.
Lisa: Chris, I’m interested in the work that you do because I have patients who come in who are of various ages but tend to be older who fall. Maybe they trip on a rug, maybe they trip on a threshold or maybe they’re just unsteady in general. I know that one of the things that we often will do is to have someone go into the home, physical therapist, occupational therapist to evaluate why it is that this person is falling because falls present an enormous risk for people who are old. If you have a fall, you could break a hip. If you break a hip, end up in the hospital, it’s not a simple bone break. It’s really a life-altering event. Talk to me a little bit about the work that you do as an occupational therapist in this area.
Chris: As an OT, when I’m invited into someone’s home to look at the home environment. First and foremost, looking at what will be able to be done to increase the person’s level of independence, to stay in the home as long as possible with the caveat of as safely as possible. I make recommendations. Jill alluded to and mentioned choice earlier. That’s a lot of what I do as well is offering a consumer, an individual who has a disability, here are some choices that you can make that will potentially increase the safety of your environment. Things like taking up throw rugs if you have throw rugs. If you have cords going across the floor, getting those out of the way. A lot of consumers who have a lower vision, the transition from one room to the next can be tough. If there’s a bit of a lip or if there’s a threshold, if that can’t be removed structurally, demarcating that clearly with some high contrast. Installing some equipment in the bathroom to make it safer. Chair to sit down in the shower, in the tub if you have a tub. A chair to sit down and grab bars, higher toilet seat. Again, making recommendations and then it is ultimately up to the person with the disability and their family to decide what they’d like to move forward on.
Lisa: I think it might surprise people what barriers actually do exist out in the environment in general but even in the home. I know that when I spent three months on crutches after a knee injury, that’s just crutches and that was just short-term. In no way am I saying that I have any understanding of what it’s like to have a longer term disability, but there are a lot of things that people don’t realize make life very challenging. What are some of the top things that people come to you with? You’ve mentioned some very specific things, bathrooms and thresholds and getting in and out of the house. What are some of the things that really keep people from being able to access bigger lives?
Chris: Inside the home or out because I think inside the home, getting in and out is a huge barrier. As Jill mentioned, the ramp if you can’t do stairs anymore or if the bedroom and bathroom are upstairs, getting upstairs or coming up with an alternative solution on the first floor if that’s feasible. Kitchen can sometimes be an issue as well. If people want to do and can do, things like meal preparation and enjoy the cooking, then looking at the kitchen. Outside the home brings a host of other issues.
Lisa: Is this something that both of you deal with? I guess Jill if you’re an architect, it might be a little bit more difficult to be affecting change in the greater environment but maybe I’m wrong.
Jill: When it comes to private residences, that’s harder. We deal a lot with public accommodations in the communities and advocating for better awareness and access. This year is the 25th anniversary of the Americans with Disabilities Act. I’m just trying to remind people that it’s been 25 years that this law has been around to make sure that their businesses are accessible. If they have a historic or old building, that they still have obligations to do to make sure that people that are aging can come continue to do their shopping, to do their business that they’re not limited, that they can’t go out to dinner with their friends and family because they can’t get into the building. There’s plenty that we have to do in the buildings to make sure that people who are aging at their home can still go out in the community and access services and activities and be engaged and continue their active lifestyle. It does go beyond the home, absolutely.
Lisa: If I was say, a business owner, and I wanted to get some suggestions as to how to make my establishment more accessible, could I go to Alpha One and get some suggestions?
Jill: Yes, that is another thing that we offer is we are the main affiliate of the New England ADA center. We offer free ADA technical assistance for businesses as part of the ADA National Network. There are tax incentives out there that businesses can use to remove barriers to make their business accessible. There are checklists, guides, we have lots of free resources that we can help people with.
Lisa: I know Chris that you were talking about your experience when you were in eighth grade and how this focused your life in a certain way as an occupational therapist. Jill, when you were working at the Pine Tree Camp, did you have specific memories of things that really caused you to want to focus on this area?
Jill: I think it was my involvement at the camp where the camp itself is very accessible to everybody, not just the physical environment but also the attitudes that all the staff there doesn’t see any barriers. If someone has a disability, they can do everything. When we’d go on field trips and go outside of camp with people with different mobility devices, all kinds of disabilities, just the challenges that I’ve saw trying to help them go out to restaurants or go to parks and ballgames. Seeing the disconnect between the two and the need to make more communities accessible is what stayed with me and why I continue to do what I do.
Lisa: Chris, I’m interested in your background because you came here from Burlington because your wife was a resident internal medicine, she was a hospitalist. Now she’s working as an internal medicine specialist. She must work with a largely elderly population. Do you have conversations at the dinner table that have proven to be interesting/useful in your occupation?
Chris: We have. Keeping all the HIPA guidelines of course…
Lisa: I don’t mean patient specific.
Chris: Speaking generally, yeah, we have. We really have. Certainly, my work at Alpha One has really come to the forefront and brought some things that as an occupational therapist with experience working in acute care at the hospital or acute rehabilitation setting, I really wasn’t aware of or maybe was aware of but not to the level that I am working at Alpha One. We’ve had a lot of conversations about some of the barriers that face Mainers with disability.
Lisa: I was thinking back to this past winter and patients that I have who are wheelchair bound or maybe use walkers or even are just a little older and have difficulty navigating things like ice and snow. I would think that would provide a special challenge to people, not having beautiful summer weather. What can you do to help as people who are working with Alpha One?
Chris: I think in the community, it’s increasing awareness. In general, this winter was pretty rough. The sidewalks were passable by foot mostly. If you were using a wheelchair or if you were using an assisted device for walking, it was pretty treacherous. Just increasing awareness of local businesses and the community at large that when we’re looking at snow removal or sidewalk maintenance that we have to look at an area beyond what somebody who’s not using a device needs, but the needs of everyone who’s using the street. Even in the summertime, when there aren’t necessarily four-foot piles of snow piled up on the sidewalk, that’s when you typically see sidewalk cafes sprout up and tables come out and sandwich boards being placed which again, if you don’t need to don’t use a mobility device, doesn’t present a challenge. If you do, it can really be a challenge.
Lisa: That’s a really interesting point because I’m thinking about just this need to share space. If you’re a walker, a runner, a biker, someone who’s in a car, but then you add in also people who need a mobility device, that’s a lot of trying to orient yourself around other people. I think it’s important to have some mindfulness because if you’re just not paying attention, then you’re likely to miss somebody who’s maybe in a wheelchair and then can’t get up a curb or something like that. Is that another thing that people talk about an awful lot is just the idea to be aware of our fellow human beings and patient and …
Jill: Not only mobility devices, but also people with vision loss and what we can do to help our neighbors. It is a whole network support, whether it’s the trashcans, trash bags on the sidewalk or trimming your bushes. That way, people who can’t see don’t poke their eyes or scratch their head. Little things that yes, we take for granted until it impacts us personally and then you see it. Once it turns on, you can’t turn it off.
Chris: That’s a fantastic point. Once you have some kind of personal experience, whether it’s yourself, a family member, a friend, who’s had to deal with or had to go through a day with a disability or with a limitation, you really do have your eyes opened. You can’t un-see some of those things. What has been frustrating is again, this is just my opinion but I think by in large, people with a disability are faced with one of the last remaining areas of discrimination. It may not be overt, but the handicapped entrance, which in it of itself is a pejorative term. If you look at the etymology of the world handicap, it’s cap in hand, indicating you’re looking for a handout, is at best, “Okay, I can get into the building.” At worst, outright discriminatory. If we had a sign out front that said, “Episcopalian Jews to rear entrance,” or et cetera, something identifying this person as a specific class of citizen that can’t use the same entrance that you and I do. I don’t think it would be tolerated. As Jill mentioned, it’s been 25 years since the ADA came into law, almost. July 26th is the anniversary but we’re still struggling with that.
Lisa: Why is that? Why is it that we’ve been able to get beyond … In theory, we’ve moved in a better place with other types of things that we’ve discriminated against traditionally but in this situation, we haven’t quite gotten there yet.
Jill: We haven’t and it is challenging because people with disabilities are actually the largest minority population, larger than Hispanics or other cultures. It’s also the only minority where any one of us can become a member of. I think when people realize that, that this could be me or someone I love tomorrow; it does impact all of us personally. Why we haven’t is a great question. We have in the architectural world so many building codes and laws and new things for life safety that keep coming up and it took 25 years to update the ADA standards for buildings. It’s taken the bottom of priorities. Focus is more on housing and employment and other things that come up. That’s unfortunate, it’s too bad.
Chris: I think a lot of places look at it as a dollars and cents issue, which can be self-perpetuating. That well, I don’t have any customers who come in who have a disability, who need a larger doorway or who need a ramp. If you don’t have a ramp or you don’t have larger doorways or an accessible bathroom, how can a person who has a disability access your area? It self-perpetuates and then when you look at making modifications, making any changes to a structure, there’s always the, “I don’t own, I lease as a business owner,” or “The cost to do that, it’s really prohibitive.” We’ve been doing some presentations on the ADA and for consumers who have a disability to know your rights as a consumer that were established by the ADA. When we look at the onus, it really is on the person who has the business to make their area accessible for everyone.
Lisa: As I’m thinking about, Jill, what you’re saying as far as becoming disabled, it’s the only group that any of us could become a part of. Becoming aged is really the only group that we all hope to become a part of. It beats the alternative is what we always say.
Chris: It is completely non-discriminatory. We all eventually will get there.
Lisa: We get there or we don’t and if we don’t we just don’t have to worry about this stuff. We likely and hopefully will and so it’s interesting to me that this even becomes a question that … You’re going to have older people who are going to want to likely come into your business. You’re going to want to have people who because they’ve always come there. Now they’re the same people, they’re just maybe ten, fifteen, twenty years older. You can’t even this excuse, like, “We don’t have any older people,” because they probably do, or you at some point might.
Chris: That’s an interesting comment. About three or four weeks ago, a team from Alpha One took a week and we went on Congress Street in Portland, from one end to the other, looking at businesses in terms of their accessibility and their compliance with ADA code. One business in particular that was an exact situation. Second floor area for the business and they talked about having customers who had been coming for thirty, forty, fifty years and who wear as a badge of honor that they can still get up the stairs to the second floor. They ask, “What happens when they can no longer do that or with customers who can’t do that at all?” You’re losing a lot of that and it was brought to my attention that we do have a first floor space and we offer private shelvings there. Nowhere is that advertised at the business, that that’s even available. You’re automatically missing such a big chunk of people. I think the statistics are just at 20%, if you boil it down, it’s one if five. One out of every five people you meet has a disability. That’s a big chunk of our population.
Lisa: If you broaden that out to having special needs because you’re older, the percentage of the population that’s older is even larger than that. I would hate to be 80 years old and want to go into my favorite restaurant and have them say, “No no, you can’t sit over here. You have to sit over here because this is where the special old people sit.” It’s bad enough to think that AARP starts chasing us down with cards when we hit the age of 50. Now all of a sudden, we’ve become a population that’s not allowed to just enjoy life because of the years that have built up.
Jill: It impacts the family too because I hear from a lot of families that want to take their grandparents out to their favorite restaurant and they can’t anymore. They’re really limited where they can take someone out to a restaurant or for an event. That’s where it clicks and they see, “Oh we can’t do that anymore.” It’s too bad.
Lisa: That gets us back to where we started which is this whole idea of aging in place and we’re really not even just talking about the ability to stay in our homes, as we get older, we’re talking about the ability to live within our greater community. Aging in place isn’t just aging at our house. It’s aging and having an active life, which I believe most of us will seek to do as long as we can. How do people find out more about Alpha One and the work that you are each doing?
Chris: They can find out more information on our website, alphaonenow.org. We also have a social media presence on Facebook, on Twitter under Alpha One. You can find a host of resources there for just about any aspect of disability and community access.
Jill: We have a lot of people that also call our number, which is 207-767-2189. We have lots of friendly co-workers to help answer questions for people that aren’t as familiar with the Internet or don’t care for it as much by choice. We’re out and about in the community trying to bring awareness.
Chris: That toll-free number, 1-800-640-7200, one of the core values or core missions of any center for independent living is what we call information and referral. Someone calls with a question of, “Hey. I need to do x, y, or z,” or “I’m having trouble with a particular area.” We have a very knowledgeable staff that can point them in the direction of resources that will help.
Lisa: I appreciate your coming in and talking to me today. I feel like it’s been interesting for me because I was just thinking about aging in place [inaudible 00:26:36] older people and then you bring in people who are term-disabled. Really, in the end, it just means any of us at any given time could have something that makes it not possible for us to access something else for whatever reason. Really, it’s just a continuum. Whether people are calling Alpha One because they would like to help out an aging grandmother or because they would like to get up the stairs in their favorite restaurant, it’s all just helping people live broader lives.
Chris: One of the things that we’ve been talking about in the office that’s maybe conjecture, but I think we have the hope that as the baby boomer generation, which was so instrumental in a lot of major sea changes in culture and practice, as that group ages and begins to need a lot of the resources that we’ve talked about, we’ll start to see some of that same sea change and cultural change that we have in the past with civil rights.
Lisa: I hope that’s true too. I hope that the conversation that we’re having will perhaps cause people to think a little bit more about all of this and to think about how it personally might be impacting either themselves or someone that they care about and ultimately, that’s how things get done I think.
Jill: Yes.
Chris: Agreed.
Lisa: We’ve been speaking with Jill Johanning, who is a Maine licensed architect, and with Chris Delinick, who is an occupational therapist. Both of whom work with Alpha One. Thanks so much for being in here today.
Chris: Thanks for having us.
Jill: Thank you.