Assistive Technology Provision Within the Navajo Nation

Living with a disability

AT users provided rich descriptions of how they experienced life with a disability within the NN. Most participants described an acquired rather than a congenital disability, and thus the experience of disability was a sudden loss and change from a previously active life. Living with a disability limited participation in daily life and affected their roles, activities, and relationships. They expressed frustration, loss, and depression at their inability to be active and contribute to family or social activities, which led to a feeling of uselessness. One individual with a hearing impairment remarked, “You see others visiting and you sit there and not participate.” Some participants perceived they were a burden to family, felt abandoned by their family members, and described the despair and loneliness that accompanied the sense of abandonment:

Sometimes I just start crying and then I get so frustrated and I say, “Why do I have to be the one that is hurt all the time?” Nobody around, no family. Nobody to care for me. This is just too hard for me.

Although living with a disability took an emotional and physical toll on participants, the additional financial costs exacerbated the experience. Many participants described the difficult choices they needed to make between paying for needed medication or AT supplies or purchasing food when income was severely limited. More than 70% of participants (20/28) reported an income of less than $10,000/year, which was below the 2012 United States poverty line. Some participants were unable to continue to work, or had lost their job, yet needed to purchase AT through their own means.

Despite challenges, participants highlighted ways they addressed adversity, often describing a turning point in their attitude when they came to accept there was “life beyond disability.” Being active and involved in family and community life, (re-)engaging in meaningful activities, and developing a sense of self-reliance were ways that participants addressed the challenges of living with a disability. Some participants created new meaning and purpose for themselves through reciprocity and caregiving for others.

Disabled by the inadequate infrastructure

Eighty-six percent of participants reported living in a rural community (n = 9) or remote/rural area (n = 15), with 57% living more than 20 miles from the closest town. For AT users, the lack of infrastructure and the environmental barriers were the fundamental source of disablement. Participants described how the lack of basic communication systems, impassable unpaved roads, and inaccessible public environments created barriers to their participation in their community and society. Participants expressed that improved built-environment accessibility would improve their community participation and engagement: “Like a lot of them want to go voting but they don’t have that access—to vote or to go be a part of the chapter meetings.” However, the most pervasive infrastructure issue was inadequate housing; homes were in a state of disrepair, with many lacking running water and electricity:

We have a house but we don’t have a shower, so that is one of the other needs we have. The house has water piped in and has plumbing and all the bathroom fixtures, but no water to shower with or flush the toilet with. We don’t even have a water barrel or water tank.

Many participants needed a basic ramp installed to safely enter and exit their home. Inside the house, inaccessible spaces precluded access to essential spaces, such as the bathroom, and safety equipment such as handrails in the bath or shower was absent. Many AT-user participants experienced lengthy waits for repairs, upgrades, or a move to an accessible home. When home adaptations had been completed, some expressed concern about the quality of the work (“The installers did a shoddy job”), and thus equipment designed for safety became a safety hazard. Most perceived a lack of available funding for essential housing modifications, that their efforts to request modifications were futile, and that others were prioritized for housing. Overall, AT-user participants were frustrated and disheartened by the inability to use their home in safe and functional ways:

Where I live right now is a house that we are renting from NHA [Navajo Housing Authority]; there is nothing. In the bathroom, when I take a shower, there is nothing to hold on to. I get scared when I go in there. I have a chair so I can use that, but the bathroom is very unsafe for people like us.

AT providers described the compounding effect of inadequate infrastructure. For example, one AT provider explained that lack of clean running water affected the hygiene of those with amputations; this resulted in an inability to keep stump socks clean, led to skin breakdown and infection, and ultimately resulted in the need for further amputation.

For AT providers, lack of effective communication channels and limited all-weather road access were viewed as the most challenging infrastructure issues, because this meant difficulty in locating the whereabouts of clients when the driver arrived with their device, and challenging navigation of the terrain when rain or snow made dirt roads impassable. AT providers shared that roads were unmapped and street signs were nonexistent.

AT meaning, use, and benefits

AT-user participants described a pragmatic approach to AT use, choice, and selection; they primarily focused on usefulness, comfort, and fit within their environment. Participants were grateful for and greatly valued their AT because it served to restore lost function and promote their independence, autonomy, and self-confidence: “So I think a lot of the devices I have really enhanced being able to be more independent, and that really helps my self-esteem, because if I can do more things by myself then I can capture the world.” Participants described how AT promoted activity engagement and participation; for example, one individual with a prosthetic leg reflected, “This leg has helped me out a lot. . . . So now I can go outside and walk around and watch the kids [children] outside.”

Whereas most participants embraced the functional benefits of their AT, the experience of hearing aid users was one of unmet expectations related to hearing aid durability and effectiveness: “This device that I have, that is in my ear now, I liked it when I received it. Now I feel it is just in my way. When everyone’s talking right now it seems everyone has a pitched voice.” Hearing aids they received did not function well in all situations, and participants were still unable to participate in certain social events, such as large group meetings.

AT–person–environment appropriateness

The challenge of finding appropriate AT to address the environmental conditions was highlighted by all AT-user participants: “I cannot use my wheelchair in bad conditions, like when it’s icy, muddy, or snowing.” A prosthetic user emphasized the challenges: “I can’t really walk on the sand and the rocks.” Those who tried to use their device in the outdoor environment expressed concern for their safety; for example, one power wheelchair user described how she had to crawl home after getting stuck in soft dirt. The lack of appropriate AT led to underutilization or nonuse of the device, resulting in limited ability to engage in community life.

Recognizing the lack of compatibility between AT and the environmental conditions, decisions had to be made about the best choice. For example, participants discussed how “stickers” caused flat tires on their wheelchair, and thus although solid tires were better in that situation, air-filled tires were better for surmounting rocks. Experiential learning and considering the trade-offs were required when deciding on the most appropriate technology. AT providers described how they used knowledge of their clients’ context to supply AT:

I don’t think we ever did a myoelectric device on anyone because, first of all it’s too expensive, and for what people normally do around here it is not appropriate. It needs to be cleaned daily and a lot of our patients do not have electric or running water, and also they do a lot of rough things like chop wood and that kind of stuff.

Out-of-context AT assessments (e.g., in larger urban centers) resulted in an incongruence between the AT–person–environment; for example, one visually impaired participant was taught to use a white cane in an urban context, but he was unable to use it when he returned home. Participants recommended that extended, in-context trial periods with AT be required: “It might be appropriate for the cities where it is paved, but if they really want to test it out they should give it to someone to use for like a whole year out here.”

Policies dictating replacement cycles for AT disregarded environmental conditions; for example, a replacement cycle for wheelchairs was every 5 years, and participants of both groups believed that policies were designed for those living in cities where the environmental conditions are entirely different. One AT provider commented, “We see some people bring wheelchairs that are six months old. They beat the heck out of them. After six months it looks like it was hit by a car.” While AT-user participants expressed keen interest in acquiring new, more appropriate AT, this was tempered by the AT providers (suppliers) because they indicated that they would only be able to source more-appropriate AT if it was requested by the tribe, and if they could bill for the product.

AT service and maintenance

All focus groups raised AT maintenance and service issues; however, the AT-user and AT-provider groups differed in their perspectives on the quality and nature of the service provided. AT-user participants with a longer history of disability noted how previously existing, useful programs had been cut back. In the past, services had been local and easily accessible: “When we had our appointments with physical therapy a representative is on site here to fix everything: brakes, tires, realignment. This setup was ideal and convenient for us, and again this service is no longer available.”

AT devices often were provided without ensuring that regular maintenance or supplies were available. The financial cost associated with hearing aid repairs and batteries was a specific point of concern raised by those with hearing loss:

If I don’t have extra [batteries] on hand, then I have no hearing aid because I purchase my batteries from Gallup (New Mexico). It takes us a while to go into Gallup . . . I have to make a special trip. This device takes a lot of upkeep.

When repairs were needed, the approval process was lengthy and fraught with restrictions and delays. Although some participants reported completing minor repairs themselves, those devices with more complex parts and electronics required specialized service, and a local maintenance person was identified as an important need.

Although some AT users received education and training on device use, it often occurred out of context and thus had limited applicability. A few AT users had received education on device use upon initial receipt; one participant valued the context-specific mobility training he received from a blind peer, who “came around [into his own environment] to teach me”; however, many indicated an overall lack of training or explanation received on device use and maintenance.

In contrast, AT providers perceived that they went to great lengths to provide client-focused services. AT providers stated they provided choice when possible, worked to be responsive to needs and concerns, tailored their education on device use (using pictures and educating the family) and provided extra service (e.g., staying open late to accommodate individuals who had traveled for their appointment). Although waiting lists were commonplace, AT providers perceived that waiting was because of a lack of service providers.

Overall, a lack of attention to maintenance because of inability to afford costs or access maintenance supplies meant being left without their AT. Although the groups differed in terms of their perceptions of available services, both groups agreed that additional local services would be beneficial to reduce the travel demands on clients, to ensure more in-context and timely service provision, and to reduce the “downtime” of AT use.

Changing and limited insurance coverage

Participants discussed how differences existed in eligibility depending on whether one lived on the New Mexico or Arizona side of the reservation. Differing policies resulted in complex, fragmented application processes that participants had to negotiate for equipment access, replacement, and repair, and case managers added complexity and time to the process. Furthermore, AT users reported that recent changes and reductions in eligibility were not well conveyed, resulting in eligibility confusion and frequent denial of equipment or services: “If you live on the res [NN reservation], you have to go this way, that way, this way, just to get to where you want—just to get something done.”

A funding eligibility paradox was discussed in the AT-user focus groups: Participants explained that if they tried to be financially independent they were no longer eligible for some things, yet the income they received was not adequate to cover disability-related expenses. Eligibility for care assistance was found to be equally challenging. Approval for care assistance was based on an external assessment of independence; assessment criteria did not consider the individual’s self-perceived assessment, nor did it address the additional needs that emerged when aging with a disability. A pattern of being “not quite” disabled, poor, sick, mobility-challenged, or old enough to qualify for support continued to weave itself through many situations, including access and eligibility for AT, transportation, home care, and food stamps. AT providers also identified issues related to changing eligibility criteria and reduced services. They reported that policies and eligibility requirements were device-, age-, and state specific and underwent continuous changes, creating an ongoing perception that priorities were driven by cost containment.

AT user participants described the innovative ways they sourced AT. Whereas some people reported receiving their equipment through traditional means (e.g., hospital or vendors, paid for by government or insurance companies), others reported purchasing their devices second hand at flea markets, receiving them as a donation from their church, or acquiring them from a deceased relative.

Transportation

Transportation was viewed as a necessity on the reservation, where people are geographically dispersed and live primarily in rural and remote locations. Of the AT-user participants, only 10 (36%) owned their own car; others utilized a driver (including transport service), borrowed a car, walked, or hitchhiked. Reductions in transportation services were detrimental because transportation was seen as a crucial link for individuals with disabilities living on the reservation seeking to engage in their community. Many participants shared how they were no longer eligible for medical transport based on income or health condition. One said, “They tell me I cannot get a ride to the clinic because I make too much money. It is very frustrating because I have a total disability with my vision.” Another said, “Yes, there is medical transport but our hearing doesn’t qualify us for it. . . . For appointments for hearing and eye clinic it doesn’t qualify you for medical transport.”

AT providers supported the AT-user assertions about transportation challenges faced by individuals with disabilities, and identified that the limited reimbursement available for longer trips to see specialists resulted in companies making financially based decisions not to take on those bookings. Routine situations were perceived to become urgent and costly because of a lack of available transport services:

The whole reason for nonemergency transportation is for them to get their medication, for them to get to their follow-up appointments. If they’ve missed their medication, [or] if they’ve missed their follow-up appointments because they don’t have transportation, a month later they might end up in the ER [emergency room].

Importance of (need for) local, consistent, culturally appropriate health services/businesses

Both stakeholder groups highlighted the crucial need for local, culturally appropriate services. Although both groups spoke about the importance of Navajo fluency and ease of access, the AT-user group added a desire for health provider consistency, colocation of services, and easier access to expertise. Previously existing services that met these criteria had been discontinued because of a lack of funding, and participants lamented the loss of expert knowledge, convenience, and holistic care they had received. Throughout the focus groups, concern was raised about the lack of consistency with on-reservation physicians that precluded the development of trusting, long-term relationships. The participants explained that they needed to explain their situation to each physician:

They say, “How painful is it? Can you feel this?” and I’m like, I thought you were a doctor. You should know I’m a quad [quadriplegic] and I can’t feel to a certain point on down. But it’s like that all the time, every time.

Most participants felt that the CHR program did not meet their needs. AT-user participants reported that CHRs visited only certain people, and that requests to be added to the visitation list were denied. Some participants were told they were ineligible because they had family support, even though the family was not always available. The few participants receiving services through the CHR program felt that visits were hurried and insufficient, not lasting long enough to discuss their issues.

Culturally relevant health providers and options were desired, including access to Navajo healing ceremonies, a medicine man, translators fluent in different Navajo dialects, and care providers familiar with the needs of American Indians. Even though participants preferred local health care access, the quality of off-reservation health care service was generally felt to be superior, providing more immediate assistance with their needs. Conversely, accessing on-reservation services meant waiting (e.g., waiting all day at the pharmacy to pick up medicine).

AT providers believed that the need to travel for health services negatively affected their clients’ quality of life. Sometimes providers felt there to be a lack of awareness of existing local services, resulting in referrals off reservation and unnecessary travel. Traveling long distances to other health service units on the reservation, and to health care facilities off reservation to receive AT services and/or devices was reported by AT users in all focus groups. Although there was an identified need for local businesses, AT providers described barriers to this:

First of all, where will we be located there? We have to deal with our building restrictions as far as all the permits, water, and everything else. So I think that’s why you do not see providers on the reservation.

Alongside the need for local business expansion, participants expressed the need for more AT providers, because increased business development without concomitant AT provider availability would simply serve to increase already long waiting lists. One necessary element to increase local business development was to ensure that reimbursement for services was forthcoming and timely.

Lack of awareness–not understanding–not feeling understood

Participants discussed how, despite what the authorities said, their actions did not match their words. AT-user participants felt they were not always understood or prioritized in society:

Government [Navajo] says disability is priority but does not follow through with money, help, or assistance for those with low income. They usually say in every chapter meeting that disability is their first priority. Whenever money is allocated to the chapter house we usually get left out. Not enough for the disabled.

AT users felt overlooked and misunderstood by society in general, and actions taken by others demonstrated a lack of awareness and understanding. Participants believed they were not understood at a local level, in part because tribal authorities did not always hear their concerns:

Even the tribe, I don’t know if they can do something about it. You ask them to do things like this and they will never help you. They don’t listen to you, they just ignore you. That is how they are.

Even though they wanted to be self-sufficient and independent, when society and officials were not aware of and thus did not understand their issues, individuals with disabilities could not receive the help they felt they needed. Participants expressed a sense of futility when they had asked for assistance but were denied.

Participants felt they lacked opportunity to voice their concerns, in part because they felt disempowered as individuals with disabilities. Furthermore they felt that in the past they had the opportunity to express their concerns, but recent changes in chapter structure meant they lacked the opportunity to express their voice in local government matters:

The officers . . . are the ones that are the core at the chapter meetings, and no one from the audience or outside can speak unless one of these people put you on the agenda about two or three weeks ahead. . . . The chapter officials are the ones that control the meetings, and that control the funding and give out different services.

AT-user participants felt that they lacked decisional autonomy to get their needs met; for example, some providers made decisions about the type of mobility device provided while disregarding individual requests and needs:

I feel it’s very important the doctors listen to our concerns. I have expressed to my doctor that I am in a need of a wheelchair. Once darkness comes it’s hard for me to move about in my home, and I desire a wheelchair. I think I can move about my home in a lightweight and narrow wheelchair. I need it for those purposes. I make a request to get a narrow wheelchair so I can get easily around my house. They don’t listen to me; they tell me I don’t need it. In reality, I do.

Despite holding out hope that their concerns would be heard by officials, they felt disillusioned by unfulfilled promises of help and support, which had resulted in a lack of trust in the word of authorities. Some participants felt that although the NN government was able to apply for targeted federal funds, those funds were not allocated to the people themselves:

Apparently they [NN government officials] would say that they are getting money from this place and that place for the elderly and for the disabled, but what happened to the money? People don’t get help. Disabled people don’t get help.

The participants wanted transparency in funding availability and decision making, and overall, some felt that the tribal government could do more to support the needs of persons with disabilities.

Awareness–understanding–feeling understood

The cycle of lack of awareness–not understanding–not feeling understood was clearly contrasted in a few situations. For the most part, these contrasts were not programs or policies, but rather specifically named individuals who were aware of the issues faced by the AT-user participants, had a personal connection with an individual with a disability, were disabled themselves, or lived on the reservation. For example, the understanding of one AT provider was described as follows:

[Name] used to do all the maintenance out here. She lives on the reservation. She knows how difficult it is. She understands because she has a nephew in a wheelchair. So she understands the need for it and she understands how hard it is when our chairs break down, so she goes out of her way to fix our stuff.

People who understood demonstrated caring through behaviors such as being sensitive and responsive to the unique needs of individuals with disabilities and treating individuals with disabilities with respect, even if it meant not following rules and procedures. For example, participants contrasted different medical transport drivers, some who were rule-bound and inflexible and some who understood (e.g., respecting their need to eat while traveling). Furthermore, AT devices designed by someone with a disability were deemed more appropriate because that person understood:

The stuff that is made by people that are disabled, like you’re saying this chair was made by someone with a spinal cord injury. I think that is more appropriate than somebody that is just producing [wheelchairs] and they are not disabled themselves.

AT-user participants described the advocacy, education, and peer-support strategies they undertook to enhance the cycle of feeling understood:

Tomorrow I go back to Tuba City. I’m going to speak to the Tuba City administration and raise my voice. If I have to take a malpractice suit I will. This is what we need. Advocacy. We need as handicap people to have some kind of advocacy. It would help in the Navajo system.

Others believed that advocacy efforts needed to be developed in collaboration with others, and that advocacy coalitions needed to be distinct from government.

Educating others and increasing societal awareness of the issues was a second strategy used to feel understood. Some felt that media attention would be useful in calling awareness to the issues: “Somehow I hope that the concerns that we are expressing here will come up in the papers, all over the media. . . . That is the only way that a lot can be done.”

Finally, participants discussed the lack of opportunity to discuss the issues they faced with others who could empathize. The opportunity to discuss issues with their peers in the research focus groups opened up the possibility that this would be a useful strategy for feeling listened to and understood:

When I talk to someone, you know someone that will listen, I will feel better. Sometimes it is hard for me to talk to somebody because nobody’s never around. . . . But today I feel better. I’ve enjoyed being here. I enjoyed talking. This way we learn things from one another and who did what to get better.

Individual with a disability as primary client

Those who provided direct services strove to be client focused; responding to client needs was viewed as a key to success. They modified their operating hours, traveled to the individual with a disability, employed Navajo-speaking staff, conducted thorough assessments to provide the most appropriate AT device, provided choice of AT whenever possible, and educated clients. Flexibility in policy application was important; for example, one participant described how her department provided services beyond the warranty period, and wouldn’t deny service to people from other health service units. Customer service overrode profit, as described by a transportation company representative:

We do courtesy rides when they’re prearranged and we don’t get reimbursed from anybody. If we are in the area and we do have a driver . . . if the facility calls then we will do that, courtesy rides.

Finally, ensuring that they were able to meet regulatory, safety, ongoing education, and credentialing requirements was an important contributor to their business success.

Service provider as primary client

For those who viewed service providers as their primary client, profit and financial viability of the business was the priority. As for-profit companies, their primary role was to deliver and set up the equipment prescribed by the service providers, and thus any other needs of or requests from the individual with a disability were secondary:

I would say communication with the client [referring to the individual with a disability] is on the low end because most of them . . . . That’s unfortunate that the discussion of what the patient really needs is the bottom. Nobody really looks at that because we’re trying to impress more of the doctors and staff that are doing the orders, than what the patient really needs. . . . You have to get the doctor to buy in first.

A successful business was defined by financial viability. Participants relayed how it might take up to 2 years to receive payment for a claim while insurance and health plan providers battled over responsibility for payment. Often, service provider requests and accompanying documentation were incomplete, creating further delays.

The role of intermediary

In many instances, the AT providers took on the role of intermediary between the client (individual with a disability) and others (insurers, health care providers); for example, some relayed how they would deliver equipment ordered by a doctor, but the client would be unaware that the request had even been made. Sometimes, the AT-provider participants provided referral services and education about available resources, based on their observations:

A lot of the drivers, they do observe [the client], and let’s say if they do have an elder who cannot help herself or can’t do anything for herself, they will let us know. . . . We will call the home health care agency and let them know that this person probably needs somebody. Either that, or we will let the client know that there are services or resources out there that they can utilize.

The AT providers were caught in the middle of policies developed at a systems level. Although not responsible for insurance eligibility or funding cuts, the AT providers often became the point of contact for conveying these situations to the clients. Because of ineffective communication mechanisms between insurers and insured, AT providers served an important and unrecognized role as a communication link between the insurers/payers and the individuals with disabilities, having to explain the complexities of eligibility: “And so a lot of times what our people do is they have to explain to them [clients] what kind of services are covered under their insurance, and they don’t understand, a lot of them.”