Supporting People with Disabilities in Rural Communities, with Rayna Sage and Catherine Ipsen

Organizations and resources mentioned in this episode:

• Research & Training Center on Disability in Rural Communities (RTC:Rural), University of Montana
• The U. S. Supreme Court's 1999 decision in Olmstead v. L.C.
• Serving People with Disabilities in the Most Integrated Setting: Community Living and Olmstead, U.S. Department of Health and Human Services Office of Civil Rights
• Medicaid Long Term Services & Supports
• Centers for Independent Living, Administration for Community Living
• University of California San Francisco and University of Montana's joint research paper, Personal Care Aides: Assessing Self-Care Needs And Worker Shortages In Rural Areas, October 2022
• Area Agencies on Aging, Administration for Community Living
• Association of Programs for Rural Independent Living (APRIL)
• Fact Sheet: The Bipartisan Infrastructure Deal (Infrastructure Investment and Jobs Act)

Transcript

Andrew Nelson: Welcome to Exploring Rural Health, a podcast from the Rural Health Information Hub. My name is Andrew Nelson. In this podcast, we'll be talking with a variety of experts about providing rural healthcare, problems they've encountered, and ways in which those problems can be solved. Today, I am speaking with Dr. Rayna Sage and Dr. Catherine Ipsen. They're co-directors of the Research and Training Center on Disability in Rural Communities at the University of Montana. Thank you both for joining us today.

Catherine Ipsen: Thank you.

Rayna Sage: Glad to be here.

Andrew Nelson: To get started, can you tell us a little bit about the population that lives with disabilities in rural parts of the country in terms of demographics, types of disability, living situations, and so forth?

Catherine Ipsen: Sure, I'll start that question. I think that there's this assumption that rural disability rates are higher because older people live in rural communities, and therefore kind of age into disability. But while there are more older people in rural areas, the disability rate isn't driven by being older. And in fact, there are higher rates of disability across the age span and across different disability types in rural compared to urban areas.

Rayna Sage: And this is Rayna. I would just add that while many rural areas are less diverse in terms of racial diversity, it's not always the case. And when we think about rural, we often have stereotypes of white, farming, Midwestern, and there's really a lot of different types of rural communities. But rural places do lead the country in poverty rates. Rural people report the onset of disability earlier than urban folks, and that's especially true for people of color.

Catherine Ipsen: One other thing I wanted to add was that rural communities in general are less accessible to community members. And this really happens because there's older building stock, there's less new construction. There are things like transportation barriers that prevent people from getting around, and then a lot of smaller employers that are not subject to some of the same legislative requirements in terms of meeting the ADA [Americans with Disabilities Act]. So rural has higher rates of disability, but there's also this intersection with the environment that can create more limiting circumstances.

Andrew Nelson: We often hear about the goal of independent living for people with disabilities. Could you tell us what that term means, and what that might look like in a rural community?

Catherine Ipsen: I would say that independent living really centers on the concept of choice and control. And while many individuals may depend on others for assistance with personal care or activities of daily living, having a choice about who those people are, how those activities are done, and where this assistance is delivered really factors into this independent living concept.

Rayna Sage: And I would just add that in terms of policies and independent living, many people with disabilities have been placed in restricted settings such as nursing homes against their will unnecessarily. And in 1999, the Supreme Court ruled in the Olmstead decision that people have the right to receive services in the most integrated setting possible. And so this resulted in transitions from institutions into the community, but many people still live in more restricted settings than they desire. And this is especially true in rural, where there was a push to rebalance the long-term supports and services funding, particularly Medicaid dollars, to move it from nursing home funding to home and community-based services. And while that rebalancing was accomplished in 2015 with 51% of the funding being majority community-based services, it has not been realized in rural places where the majority of funding is still going to nursing homes. And this is a particularly problematic issue when we think about nursing home closures happening in rural places faster and more often than in urban places, which means that there's not community-based services replacing those. And so this really then leaves a lot of rural people dependent on their families and neighbors, and reduces their choice and control over who they who they receive services from and when.

Catherine Ipsen: And just to add on that, one of those risks of a nursing home closure in a rural community is that if there aren't those supports and services in place, that may require the person to move to another nursing home that's away from their community. And so really adds this compounded issue of not only being kind of in this restricted setting, but no longer having access to the people and community activities that are important to that individual.

Andrew Nelson: Rural people often grow up in and live their entire lives in the same part of the country, around the same people. It can be very important for them to continue to be able to age in place in that environment with those people that they know. What are some services that can help enable people with disabilities in rural areas to gain or maintain their independence?

Catherine Ipsen: When we think about independent living, it's really important to think about how all these different systems interact together. And so, for instance, accessibility and accessible homes can make a huge difference to promoting independent living. More accessible homes allow people to live in places with the same amount or less care than they would otherwise. And there's really simple and low-cost ways of increasing that opportunity. One example that we've based some of our research on is really looking at really low-cost home modifications, such as getting a shower bench and a handheld shower, and all of a sudden, you've taken someone who maybe required quite a bit of assistance to bathe, and then they can do some of those activities independently and with less energy expenditure, which then allows them to go out in the community and have more energy to do that, or they feel fresh and bathed, and so they're more willing to interact with people. So these kind of really low-cost things that have these kind of magnifying impacts across a person's participation spectrum.

Rayna Sage: Transportation is a huge issue. Many people don't drive, and they must rely on others for rides to get to medical appointments and shopping and place of employment or social events. And so some communities have addressed this through really innovative models such as transportation voucher programs that are specific to rural and using some transportation dollars to pay for rides from friends and family, rather than having to rely on non-existent rideshare things like Uber or taxis that just don't exist in rural places.

Catherine Ipsen: In rural communities, most people use personal vehicles to get around. And if you have a travel-limiting disability that prevents you from driving, that can be an issue. I would say that there's certain rural models that don't make as much sense as other models. So, for instance, fixed-route models in a rural area tend to not serve very many people because they have a very specific schedule that doesn't really accommodate specific needs and they don't have very many options. And thinking creatively at the community level is like, “Would it make more sense to have people invest in some software that allows people to put in what their rider needs are and then have transportation tailored to those individual needs, as opposed to a fixed route?”

And I don't know if everyone knows what a fixed route is, but it means that the bus comes at nine and noon and three on Monday, Wednesday, and Friday. “Okay, that's great. I can do my errands, but it doesn't sufficiently cover my transportation to work or that kind of thing,” that tailored stuff. There are very creative solutions in terms of tapping into church networks. There was one study where they actually did use school buses off school hours to provide transportation to folks. There are employers who will kind of go, “Okay, we're going to make sure that people can get to our place of employment,” so they will buy a van that people can use collectively. I think that the important thing is flexibility and really trying to build out systems that offer that.

Rayna talked a little bit about transportation voucher models, and this is a way that's gotten so much more sophisticated, but you can have accounts with dollars in them that people can spend for rides with families and friends that really reduces that dependence and makes the relationship more transactional, where I can ask my friend to do this, they get a benefit by doing this, and I get a benefit from the ride. And I'm not paying a high price like Uber, and I have a consistent relationship with someone who knows about my physical disability needs and how I transfer and that kind of thing. So I think that areas can get really creative in these models. It takes a champion, I think, in a community who can really coalesce different community members around the effort, but it is possible.

Rayna Sage: I think community action councils or human service agencies and rural places that manage some of these rural services, whether it's a volunteer or voucher program also have to keep an eye towards accessibility and making sure if they do have their own vehicles, that at least one has some accessibility features for folks, because that can be a problem. Like, “Yes, I have a friend who can take me, but I can't get into their pickup truck.” So just thinking about having accessible vehicles available in rural places also. And then kind of related to that, thinking about service provision and some of the work we've done with disability service services organizations like Centers for Independent Living is that these organizations are usually housed in urban places, but are charged with serving the entire rural area around those urban centers.

And they have a hard time, and they really have to be nimble and innovative in their thinking when they reach out to rural places. And just understanding what resources already exist there; what they need to do to build trust and to understand that there's mistrust and think about what it takes to build relationships to get those services out into those rural areas. For example, one partner that we worked with in rural Michigan became part of an antique car club and was able to then deliver independent living services to folks who are part of this antique car club and other people in the community.

Andrew Nelson: Another form of support or another service that can help people to maintain their independence as they age in place are personal assistance workers. Have you found there are generally enough personal assistance workers to meet rural clients' needs? And if not, what types of shortage or maldistribution have you seen in that workforce?

Rayna Sage: We've done quite a bit of work in this area, looking specifically at rural issues. And some of our research and collaboration with folks at UCSF looked at the distribution of personal care aides and the distribution of people with self-care disabilities. These are people who said they have some serious difficulty with dressing and bathing, or serious difficulty with running errands. And this is just one way we try to measure potential need for personal care. And what we found is that there are fewer aides to people with self-care disabilities in rural places, and that this is particularly true in the South. And part of the reason why there's not more workers in rural places is that the system for incentivizing workers is very urban-centric. PCAs, or Personal Care Aides, are expected to piece together multiple clients in a day to work full-time. And that just doesn't work in rural places where you have to drive far distances between people. And you spend a lot of time in what our participants have called “windshield time,” that's not compensated in many states, nor the wear and tear on their vehicles. So it's not a job that pays well. It's a tough job. And then we have this bias towards being able to see multiple people in one apartment building to fulfill a full-time day. It's just not possible.

Catherine Ipsen: Part of that rural scenario is it really depends on what an individual's needs are, how difficult it is to fill those positions. If you have significant needs and then get significant funding to do that, and you can piece together an eight-hour-a-day job, then that might be an easier thing to fulfill as opposed to someone like my mother, who had brittle diabetes and needed someone to come five times a day to administer and test for insulin. And so I think that the needs drive some of that difficulty. But for people who need weekends, or weekend support, or evening support, or those kinds of things, they really are in a significant bind because there are places that won't come out.

And then from an economic standpoint, if you have provider agencies, they don't make as much money on these kinds of situations, these harder-to-serve cases. And so, they bring in their services. If there's a worker shortage, they go, “Okay, we're no longer going to serve this area.” And the areas that get dropped from services are the rural communities. So, you know, part of the thing is assuming that everyone is working independently and there's this windshield time, but there's also these agency perspectives about what is good for our bottom line? And our bottom line is enhanced by serving an urban area where we can cram more people in in a day and that sort of thing.

Andrew Nelson: Earlier you mentioned people helping family members with disabilities in rural communities. What are some of the ways that they can do that?

Rayna Sage: Family members are super important. Eighty percent of personal care in the United States is provided by unpaid family and friends, mostly women. And so that's millions of dollars that is not actual paid care.

It's hard to transition into independence. These systems can become paternal or maternal in certain situations. The goal of independent living is that the person gets to make their own decisions and choices and have control over their lives. And so, working on self-advocacy skills and working with family members to improve that balance of independence and interdependence. And I think that if somebody is working with a family member who needs more additional support to maintain their independence, just knowing that it might take extra time and energy to find appropriate organizations and people to get what they need. Disability and aging services vary from location to location and state to state. And in rural communities, word of mouth can be really powerful. So, it might just mean having a conversation with a local pastor to learn what other people have done or talking with the local librarian. From an advocacy perspective, it's just important to make sure to hold those urban organizations accountable that are tasked with serving rural areas.

Catherine Ipsen: There are groups that exist out there, and they may not serve every community, but every community should know that they exist. And things like Centers for Independent Living are a great resource. There are multiple centers across the United States, and people should reach out to their Center for Independent Living and ask. A lot of services are driven by the demand that people ask of them. And so, if no one from a rural community knows about this center that's charged with serving this rural community, it's this miscommunication where a person needs services but doesn't know to ask, and the agency doesn't know to serve because the person hasn't asked. And I think that across the board, there's things like Area Agencies on Aging, and other different organizations, even libraries are just such an example of, this is a community resource that exists across space in a pretty consistent way. And drawing upon libraries as this community connector is important because it then drives the conversations that then build the services. If people ask for services, then there's more likelihood that they're going to become available and seen as something that's needed. And to Rayna's point, it's really important to hold agencies that are supposed to serve regions accountable.

Rayna Sage: There are, in many states, things like respite care dollars that a lot of people don't know how to access, where you have an unpaid family member who then can get an afternoon to go do things, or housekeeping service dollars. I think a lot of people think, “I don't need help until I have a medical reason,” because it's still that really medical model. But to just be able to have somebody who comes and does the dishes or prepares food can really free up some of that energy. And so there are dollars in many states for that. It's just finding, like Catherine said, finding the right agency and where those dollars are.

One thing I've seen that's pretty effective in rural communities for spreading information is to do little inserts in the utility bills. So that's something that if rural places maybe don't have like a community board or a Facebook page, that's one way that I've seen people learn about what's going on with different services by having that little insert in the utility bill.

Andrew Nelson: Yeah. Especially for people that aren't on Facebook or don't use the internet very much. That's a great way to reach out to people. Catherine, earlier you mentioned community living as one alternative to a nursing home. People don't necessarily need to go from living by themselves to living in a nursing home. Could you talk about some of the other environments they might be able to consider to maintain their quality of life?

Catherine Ipsen: Well, I think that in-between model can be done with a group home where individuals come together to live and they have supports that are shared across individuals — it can be informal or formal arrangement — but that's one. There's some transitional and assisted living options. I think that the most important thing is really that advanced planning so that you aren't approaching a situation or a transition in a crisis, that you actually have done some thinking ahead of that crisis so that you aren't making all these kind of changes in this emergency system where you're like, “Okay, we have to get you placed. We have to, et cetera” The other thing that I would say is that assistive technology and people's ability to build that into their homes ahead of a crisis is super important. There are so many things available to people now. There's robots that can help with feeding, there's remote cameras so that someone doesn't have to necessarily be with you all the time. There's smart homes. There are things that people can do, things as simple as grab bars or if we have a situation where I know my health and physical ability is deteriorating, then time to figure out how to get the laundry upstairs or how to make these shifts in your home environment to allow you to stay there longer, and with more ease and safety. I think even the most inaccessible home can be made more accessible and safer with some changes.

Rayna Sage: The assistive technology and home modifications too can really be critical in supporting those unpaid caregivers that enable folks to stay in their homes. If you have a lift system throughout your home, that makes a big difference because their wife doesn't have to lift them and they can get all over the home. And so having those also supports our unpaid and paid caregivers and guards against injury and fatigue. And the other thing that's not happening in very many communities, but I think it's super cool, and there is kind of a movement definitely in Europe and maybe here a little bit in the aging, is doing these rural cooperatives that are multi-generational arrangements between younger people who, especially with the housing situation that we're seeing in many places, can have affordable housing in exchange for some of the caregiving and community maintenance tasks. Again, not seeing it too much, but I think it's cool.

Andrew Nelson: Yeah. Yeah. It's good to be aware of some of those possibilities. Even if it might not be feasible to do right now, it's something community members can kind of keep in mind if they see an opportunity or a way they might be able to implement it in the future.

Catherine Ipsen: Rayna brought up a gentleman who got a lift system throughout his house, and how he managed to do that with was with managed care dollars. There were actually dollars available for him to make those kinds of modifications. I don't know that that's true for every managed care company, but like, explore that. “Will you pay for X, Y, and Z?” knowing that at the other end, you're not going to be paying for home health aides or that sort of thing. So there's a tradeoff and there's a possibility for negotiation in terms of covering those kinds of costs.

Andrew Nelson: Absolutely. Since aging can often come with disability, we might often lump together aging and disability topics. Can you talk about some of the needs of children and younger adults with disabilities in rural communities that might be different from those of older adults?

Catherine Ipsen: One of the things that we can do to most benefit a younger person with a disability is to really allow them the opportunity to begin to find their own voice and to describe their own needs and to ask people for assistance in the ways that they need it. I think that one of the really hard things for transition age is that in the schools and in their homes, parents really pick up a lot of the slack. And I think that that's really important, when their kids are really young and they may not have some of those skills, but as kids get closer and closer to adulthood there needs to be opportunities for them to really practice being adults, and practice finding the services that they need, and practice managing finances, and practice understanding what their disability is and what kinds of accommodations they need, or that sort of thing.

So there's training that kids can receive on those kinds of skills, but it's important they're outside of the school setting, for instance. And things like driver training; lots of kids with disabilities can drive if given the opportunity and coursework that allows them to take the tests in a way that they can learn the material and succeed. But you know, they need to practice that; you don't go from being really supported a lot to being independent without having some practice time.

Rayna Sage: And I would add to that, what we hear in the independent living community and disability justice community is that part of how young people build the confidence and get ideas for how to build their own independent lives is through opportunity to be with peers. And so for a lot of rural youth, they might be the only person in their school with a disability or one of a handful of people, and everybody has a different disability and it's a different experience. And so getting young people connected with organizations like APRIL, the Association for Programs and Rural Independent Living, that organization really focuses on helping youth build their own disability identity and connect with other people, peers who have similar experiences and also live in rural communities. And I think that piece can really support the, “I talked to my friend and this is a strategy they use in the classroom with their teacher, and now I'm going to try this strategy,” and can support those kinds of things that Catherine was talking about.

Andrew Nelson: I suppose having perhaps an increased familiarity with the internet and being able to research and connect with people online might be helpful to them. Rural broadband continues to be something that many rural communities don't have or aren't set up to supply adequate access to. But that is something that might kind of help to empower rural younger people with disabilities in a way we haven't seen up to this point.

Catherine Ipsen: Absolutely, Andrew, I really appreciate that comment because the world is moving towards digital solutions in so many spheres, be it medicine, be it education, be it employment, and really practicing those skills is an important thing. And things like becoming part of a peer group and having to get on the internet and having to Zoom and having to type things and that sort of thing really helps people move towards more independence later. And I agree that digital access is and continues to be an issue, but there are also solutions and strategies to overcome that. Most libraries have some kind of digital access and public use computers, so do adult learning centers, so do most schools. And really trying to think creatively within those settings, it doesn't necessarily need to be at home, out on the farm, where that digital access is more limited.

Digital access can take many forms and satellite is one strategy. Unfortunately, all these things come with a cost, right? But there are programs available, particularly with the Infrastructure Act, that are designed to overcome some of those limitations. And there are discounts for people who maybe don't have the funds to buy internet access or other satellite kinds of options. And, you know, there's programs to help them with that. I think with all things rural, first, it's very individualized, right? It's not like, “Oh, hey, big city with millions of people, here's how you can address this.” It might be different, but there usually are some strategies, and really tapping into places like independent living centers that really have those kinds of strategies at their fingertips for that particular region or area are important.

Andrew Nelson: Yeah. I guess we generally tend to think of younger people as often being more comfortable with technology and more tech-savvy. But in general, having access to some of those other forms of communication will enable people to have more of a sense of community. You mentioned earlier how a person might be the only person in your area that has a disability or is facing a particular challenge, but you can connect with other people in other places that are sharing some of those experiences. That's not really a service in the way that providing transportation or having a personal assistant is, but that can still be an important kind of support as well.

Rayna Sage: When we're thinking about people with disabilities and in rural places, one thing that we want to be thoughtful about is guarding against social isolation and loneliness. As you know, it's connected to physical and mental health deterioration and just looking for ways like peer support or through a community group or ways to guard against that for rural people. Because no matter our ability level, we generally feel better when we feel needed, and that we are contributing and not a burden. So having that be a reciprocal situation. So again, not necessarily formal, although we have seen some peer and mentoring programs that are more formal, but just helping guard against that and making sure people feel like they're contributing as part of their community.

Andrew Nelson: You've been listening to Exploring Rural Health, a podcast from RHIhub. In this episode, we spoke with Dr. Rayna Sage and Dr. Catherine Ipsen, co-directors of the Research and Training Center on Disability in Rural Communities at the University of Montana. Look in our show notes for more information about their work and visit ruralhealthinfo.org for all things pertaining to rural health.