A child doesn’t necessarily spend every minute thinking, “I have a spinal cord injury (SCI).” There is homework to finish, someone to text back, a game to play, interests to discover, and a growing sense of who they are becoming. Part of growing up is also figuring out where you fit—with friends, at school, in family life, and, over time, how to make decisions that shape your own life. SCI can be part of every day without being the subject of every day.

And then there are moments when disability moves right to the front. Maybe plans with friends have to change because the place they chose is difficult to navigate. Maybe getting ready for school takes longer one morning because something with your body, equipment, or routine is not cooperating.

For a young person with SCI, growing up includes simply being in the moment and then quickly being reminded that moving through the world sometimes asks something different of you. As childhood expands into new places, relationships, and experiences, what SCI means in daily life changes too. The work of Craig H. Neilsen Foundation grantee partners offers a window into how those needs can shift across community life, healthcare, and research.

Community: Being Part of the Room

One grantee partner’s school transition program helps students with SCI navigate the return to school and the changing demands that come with it. A first grader in the program knew exactly what was bothering them. When their classmates sat on the floor for activities, they stayed in their wheelchair and felt different from the rest of the group. The team worked with this child on how to make a safe transfer to the floor. On paper, that is a mobility skill—in the classroom, it meant sitting with friends was an option.

Another student in the same program faced a different challenge. Their high school campus was large, the hallways were crowded, they were learning to use new forearm crutches, and they needed a strategy to effectively navigate the hallway traffic. The program’s care team met the student on campus so they could practice the routes to travel between classes.

Belonging is an important part of childhood but young people with SCI have to think about things their peers rarely need to consider: how they will move through a space, will a plan work for their body, or will they be able to participate in the way they want?

Those calculations exist alongside everything else that makes them a kid, including friendships, hobbies, school, family, and a growing desire to make more choices for themselves. SCI does not have to be the focus of an experience to shape it but being part of the room does require more thought, preparation, or support.

Healthcare: Learning Your Own Body

Children with SCI can become familiar with healthcare language early. They may grow up knowing the rhythm of therapy and medical visits and paying close attention to things happening in their bodies that other children have little reason to notice.

One grantee partner described pediatric care as something that has to keep pace with the child as they grow. Earlier goals give way to different needs, and therapy must adjust with them. The young person can change within that relationship too. Someone who has spent years being examined, treated, and asked how something feels may come to know their body extremely well and develop their own sense of what is working.

As that voice grows, it might mean:

• speaking up when something does not feel right
• expressing a preference about care or equipment
• asking questions and being included in decisions
• directing assistance in the way that works best for them

Being included in one’s own care is another part of growing up. As health needs change, so does the young person’s role in understanding and managing them.

Research: What Are We Actually Trying to Change?

Many doctors and scientists are devoted to improving the lives of people with spinal cord injuries. Their studies have to define what progress should look like so that they can measure it. Researchers call the changes they choose to measure outcomes. These might include building strength, relieving pain, recovering lost functions, or participation in activities that improve quality of life. Those measures are important but may tell only part of the story for a young person living with SCI.

One grantee partner studied how caregivers can and do adapt as their child with SCI participates in an activity-based therapy that focuses on improving how the nervous system and muscles work together. Researchers followed families over time, looking not only at the child’s clinical progress but also at what caregivers were noticing as their children develop and how family life adjusted around SCI.

In interviews, caregivers described children taking greater initiative and progressing socially, emotionally, and cognitively. They talked about becoming less worried about the future as their children gained skills and confidence, while also expressing concern about what might happen when the intensive therapy ended. One recurring idea was wanting their children to be “at the table” and included in the activities and decisions happening around them.

Those observations captured parts of progress that a physical assessment alone might miss. For youth with SCI, progress can include not only what the body is able to do, but whether a young person has more opportunity to participate, belong, make choices, and be part of everyday life.

Where SCI Fits

Progress after SCI can take many forms, and Neilsen Foundation grantee partners are contributing in different ways. Their work includes research aimed at restoring function as well as programs that address the practical and social realities of growing up with SCI, including access to experiences that support fuller participation.

The Craig H. Neilsen Foundation is pleased to announce $10.5 million in new grant funding through its Spinal Cord Injury Research on the Translational Spectrum portfolio, known as SCIRTS.

This year, 29 grants were selected for funding, including support to train four Postdoctoral Fellows to help ensure early career scientists are entering the world of SCI. The selected proposals also reflect the Foundation’s continued commitment to moving discoveries from the laboratory toward practical benefits for people living with spinal cord injury.

The SCIRTS portfolio supports research across many areas of SCI. Studies focus on understanding what happens in the body after injury to enable testing of possible treatments such as medicines, cell-based approaches, devices including electrical stimulation, rehabilitation strategies, or combinations of these therapies. Across the portfolio, the goal is to support work that can help improve health, independence, and quality of life after SCI.

The newly funded studies will explore a wide range of questions that matter to people living with SCI. Several focus on inflammation after injury, which is part of the body’s immune response. Inflammation can help protect the body, but when it continues on for too long or happens at the wrong time, it can contribute to additional damage within the spinal cord. Some grantee partners will study ways to reduce harmful immune responses, while others will look at how improving blood flow and circulation in the injured spinal cord may help protect tissue and support recovery.

Another group of studies focuses on bowel, bladder, and sexual function which is often noted as a top priority for people living with SCI. These areas are deeply connected to health, dignity, daily routines, and quality of life, yet they have often received less attention from the research community as compared to movement-related outcomes. In several new research programs, our grantee partners will study different ways to improve bowel and bladder function, detect and prevent urinary tract infections, and better understand sexual function after SCI.

Breathing and respiratory health also continue to be important areas of focus. Breathing problems can be a major source of health complications after SCI, especially for people whose injuries affect the chest muscles needed to breathe or cough effectively. Some newly funded studies will look at why certain people respond better than others to low-oxygen breathing therapy, while others will study stimulation approaches that may help strengthen coughing or support diaphragm function.

These studies are part of a larger question in SCI research—why does a treatment help some people more than others? Researchers are increasingly looking for biomarkers, or measurable signs in the body, that may help predict whether a treatment is likely to work for a specific person. A biomarker might be found in blood, genes, nervous system activity, or another biological signal. A better understanding of these differences could help future therapies become more personalized and effective.

Other newly funded work will explore approaches such as home-based rehabilitation and new ways to measure whether a treatment is acceptable as well as beneficial. In addition, more teams are also involving people living with SCI when designing their studies or choosing what outcomes to measure. These efforts reflect the importance of asking not only whether a treatment works, but whether it is practical in addressing priorities that matter in daily life.

As this work moves forward, each study will contribute to a deeper understanding of SCI and the complex questions that continue to shape research and treatment. The Neilsen Foundation is proud to support the 2026 SCIRTS grantee partners as they begin research rooted in the experiences and priorities of people living with SCI.

Learn more about our SCIRTS application process and funding opportunities here.

On March 12, 1990, more than 500 people gathered at the base of the United States Capitol and began to march. When they reached the west steps of the building, scores of them left their wheelchairs and mobility aids behind and started to crawl.

Step by step, on hands and knees, up 83 marble stairs.

They were protesting the delayed passage of the Americans with Disabilities Act (ADA), a civil rights bill that had been stuck in Congress for months. Some rolled up copies of the Declaration of Independence and carried them in their pockets. One activist said, “We are crawling into history,” while another, an eight-year-old girl with cerebral palsy, made it to the top of the steps while cameras looked on.

Four months after the Capitol Crawl, President George H.W. Bush signed the ADA into law.

This July marks 36 years. It is worth pausing on what it took to get there, and just as importantly, on what it meant for what came next.

A Floor, Not a Ceiling

The ADA was a turning point. It required that public spaces, employers, transportation systems, and communication tools be made accessible to people with disabilities. It gave legal standing to a population that had long been pushed to the margins.

One of the activists who crawled up the Capitol steps that day, Anita Cameron, reflected on what the moment meant years later: “We did it to show that we disabled people, as second class citizens, needed change. And the vehicle for how it was going to change was the ADA. But I think a lot of people forget that the ADA was the floor. It was not the ceiling. So, it was the beginning of rights for us, but it was not the end.” – PBS

As a society, we still have a long way to go in understanding that complying with ADA requirements is only the start of creating accessibility. For people living with spinal cord injury (SCI), additional progress needs to be made to allow for daily living that is fully accessible. Inaccessible healthcare settings. Public transit that doesn’t reliably show up. Communities, especially rural ones, where services for people with physical disabilities are so scarce that finding an in-person activity or a peer who understands your experience can take years. The law created enforceable standards, but standards are not the same as presence. A ramp gets someone through a door—it does not guarantee that there is something meaningful on the other side.

Choice as a Measure of Progress

In a world that was not built for people with disabilities, the ADA created a legal ground for change. What the law returned to them, more than anything else, was the opportunity for choice.

Where someone lives. What schools they can attend. The ability to get to a medical appointment independently, or try to participate in a sport, or show up to a community event without having to plan around whether the entrance is wide enough for your wheelchair. These are not luxuries. They are the texture of an everyday life and look different depending on where someone lives and what they need. For some, it means having a rehabilitation program nearby with the right equipment. For others, it means finding a community of peers for the first time. For people with SCI, access has grown meaningfully because of the law and the decades of work that followed.

What Access Can Look Like

Expanding opportunities is at the center of what Craig H. Neilsen Foundation grantee partners do, across community programs, rehabilitation settings, education, and research.

One grantee partner operates a therapeutic recreation program serving people with SCI from the earliest days of inpatient rehabilitation through years after discharge. The program offered community outings, adventure trips, and subsidies that help underwrite adaptive gear, from handcycles to sit-skis, to use independently at home. Participant surveys showed that, for most, this was the first time they had tried that type of activity since their injury, and that the experience increased their confidence to pursue it on their own.

Other grantee partners continue to focus on a different kind of gap: geography. One organization brought specialized rehabilitation equipment to a region that previously did not have it, meaning individuals with SCI no longer had to travel hours to access the same technology available at major centers. Working across urban and rural communities, another grantee brought peer support, healthcare information, and adaptive recreation directly to people. In rural communities, services for adults with physical disabilities are extremely limited, and the feeling of isolation is common. In these examples, people who had never had a peer contact, or a nearby provider who understood spinal cord injury, found a point of connection.

Research shapes that range of choice too. One grantee partner is developing a tool that uses clinical data to predict which individuals with SCI are most at risk for hospital readmission. The goal is to give providers an earlier window to act, so that a health crisis does not become the thing that interrupts someone’s life, job, or recovery. Staying out of the hospital is its own form of freedom.

36 Years In

The ADA was won by people willing to crawl up 83 stairs to be heard. That is still the clearest picture of what it takes to close the distance between where things are and where they should be.

Progress is real. And it is unfinished. Both things are true, and the distance between them is exactly where this work lives.

     After a spinal cord injury (SCI), there is a period that doesn’t get talked about much. The most critical window of medical care has passed, the intensity of early rehabilitation has begun to settle, and the future is still taking shape. For many people, this is when the absence of the life they knew becomes most apparent. Not the dramatic losses, which have their own grief, but the quieter ones. The rhythm of a workday. A professional identity. Somewhere to be and a reason to be there. Work carries more than income—it creates purpose and when it disappears, what fills that space is not always easy to name.

     This is where many people with SCI begin to rethink how they might enter the workforce, not because someone introduces the idea, but because the desire to contribute is hard to ignore for long. A grantee partner researching this transition found that people who went through a structured return-to-work program reported that having someone dedicated to helping them think through their options, earlier in their recovery rather than later, made a meaningful difference in how prepared and supported they felt. What happens during that stretch of time matters enormously in shaping someone’s experience.

     Another partner has built an entire program around the philosophic idea that re-entering the workforce is often a gradual process. It is something you move toward through smaller acts of capability and contribution. This program allows people living with severe injuries to participate in a vocational program whether that begins with learning to use adaptive technology or taking part in work connected to the community around them. From the outside, these may look like activities; however, for the participants, these can be some of the first moments post-injury when they feel like someone with something to offer.

     One participant who was a skilled tradesman before their injury, made 175 handcrafted soaps for a fundraising gala. The work required their hands, their attention, and their care. The soaps were a hit! They were the reason.

     That kind of experience does not appear on a resume, but it belongs to the story of how someone gets ready to work again. The Neilsen Foundation is also proud to support a fellowship program that picks up further along that arc, placing people with SCI into paid, mentored roles in communications, public policy, nonprofit management, and other fields. The program offers coaching for writing, interview preparation, and access to professional networks, but what fellows describe as most valuable is harder to quantify. It is the experience of being in a professional environment where their disability is neither ignored nor centered. It allows individuals the opportunity to navigate the workplace as a person with SCI and is simply part of the conversation. Fellows leave the program better prepared to ask for accommodations, to talk about their experience with employers, and to understand that what they have been through is not a liability to manage but a perspective they carry.

     But returning to work after SCI involves far more than getting through the hiring process. Transportation remains one of the most persistent barriers to sustained employment for people with SCI, surfacing even after training and placement are complete. For some, it is the difference between holding a job and losing one.

     What the most effective programs understand is that returning to work after SCI is not a single event but a long sequence of them, and that support has to be present across the whole of it. The goal is not just placement—it is the kind of participation that holds, that gives someone not only an income but a reason to get up, somewhere to be, and people who expect them there. Finding the way back to that is not a small thing. We are proud to support the researchers, clinicians, and community organizations working to support the many parts of returning to work that go far beyond what appears on a resume.

Spinal cord injury (SCI) reshapes life in ways that go far beyond physical changes. It changes how people move through their days, how they connect with others, and how they see themselves over time. These experiences are central to life after injury, yet research has not always taken them into account. The Craig H. Neilsen Foundation’s Psychosocial Research (PSR) portfolio exists to help address that gap. This year, the Foundation announces 14 new PSR grants, supporting research that focuses on the emotional and social impact of living with SCI.

PSR grants support research that looks at mental health, relationships, identity, and participation in daily life, not only for individuals with SCI but also for family members and caregivers who support them. Over time, these efforts have shaped care practices, strengthened peer support programs, and contributed to tools that clinicians and individuals can use in real-world settings. A number of grants focus on building a deeper understanding of the challenges people face, while others give researchers more time to develop and test new approaches. Together, they help move ideas forward in ways that can lead to practical, usable solutions.

This year’s grants reflect both the complexity of life with SCI and the importance of looking at familiar challenges from new angles. One, for example, focuses on romantic partners, bringing attention to a part of sexual wellness that research has often overlooked. By working directly with the partner of someone living with SCI as well as their clinicians, the team aims to create tools that help couples navigate changes in intimacy and communication after injury—something many experience, but few resources directly address.

Another area of focus looks at loneliness, which continues to affect many people living with SCI even when they are connected to others. This effort builds on an existing group-based program designed to help people feel more confident in social situations. By adapting it specifically for SCI, researchers are exploring how structured support, shared experiences, and practical skills can help people reconnect in ways that feel meaningful and sustainable over time.

The work being supported stays grounded through ongoing input from people with lived experience. They shape this research at every stage and help ensure it reflects real needs and priorities. With goals to look at everyday challenges, find approaches that benefit daily living and identify barriers to participation, these perspectives keep the focus on what matters day to day and help build support that fits into people’s lives.

As spring arrives, people begin spending more time outdoors, whether that means tending to a garden, spending time on a trail, or simply gathering with others. For individuals living with spinal cord injury (SCI), those experiences are no different in principle, though they may look different in practice depending on the environment.

Across the world of SCI, organizations supported by the Craig H. Neilsen Foundation are creating more opportunities for people to spend time outside. Social connection influences well-being and through increased accessibility, community-based programming, as well as many rehabilitation environments, sharing time outdoors can have a significant impact on daily living.

Community programs reconnecting people with nature

For one grantee partner, the starting point was a garden. Their program invites individuals living with SCI to participate in small horticultural therapy sessions where participants grow vegetables, herbs, and flowers together as a group.

The program is intentionally structured to support an environment of inclusion through both participation, and connection:

• Small group sessions create space for conversation and shared learning
• Participants return regularly, allowing them to observe how the garden changes week by week as plants develop throughout the season
• Activities are adapted so people with different levels of mobility can take part comfortably

Participants often describe the experience as both relaxing and engaging. The program has organized more than 100 gardening sessions and events, creating regular opportunities for people with SCI to spend time outdoors and connect with others in their community.

Along California’s coastline, another grantee partner uses adaptive track systems that convert manual wheelchairs into all-terrain devices. With this equipment, individuals with SCI can explore beaches and coastal trails alongside volunteer naturalists and educators.

Collectively, these programs highlight how outdoor spaces can become welcoming environments when participation and access is thoughtfully designed.

Outdoor spaces in rehabilitation

Creating outdoor opportunities is also appearing more often in rehabilitation settings.

One grantee partner focused on improving access to a hospital’s garden for use during rehabilitation. The grant funded ceiling lift equipment on the SCI unit, making it easier for patients to transfer out of bed and participate in garden activities earlier in their recovery.

With this type of equipment available, patients began requesting frequent trips to the garden and found a relaxing way to spend time outside with family and friends. The space became another setting where patients could practice independence and learn important new life skills while continuing their rehabilitation.

Research exploring connection and well-being

Researchers are also examining how social environments influence health and quality of life after spinal cord injury. One study supported by the Neilsen Foundation explored social isolation and loneliness. Researchers surveyed 100s of individuals with SCI and mapped the structure of their social networks to better understand how relationships influence well-being.

The findings revealed that social networks were often small. On average, participants reported they had fewer than four people they could turn to for important conversations, and nearly one-third of participants reported high levels of loneliness. At the same time, individuals who interacted more frequently with their social networks and who had a wider range of connections reported lower loneliness and higher life satisfaction. This highlights how environments with community spaces create the opportunity for these important connections to develop naturally.

Looking ahead

These initiatives show how outdoor environments can support everyday life after spinal cord injury. Each program approaches the idea differently, but the goal is similar. They make it easier for people with SCI to spend time outside in ways that feel meaningful to them. Organizations continue developing these approaches while researchers study how connection and everyday environments influence well-being. This work is helping create more opportunities for individuals with SCI to stay engaged with their communities and the activities they enjoy.

 

When a spinal cord injury (SCI) happens in someone’s life, it does not arrive in isolation. It enters families that have already established how they communicate, make decisions, and support one another. It enters cultures rooted in language, history, and shared expectations about independence and responsibility. While SCI can disrupt daily routines and long-held roles, language and cultural values continue to guide how people adapt, renegotiate responsibilities, and make sense of change.

Disability is sometimes treated as if it creates a clean break, as if everything before it fades into the background. For most people living with SCI, that does not reflect reality. Life does not restart from zero—it continues within the pre-established language, relationships, and cultural context that were there prior to injury.

Research supported by the Craig H. Neilsen Foundation helps explain why language and culture are such an important part of this conversation. In one study, people living with SCI from different racial and ethnic backgrounds were asked to describe what independence meant to them in daily life. What researchers found was that those ideas were closely tied to culture. For some participants, independence was about doing things entirely on their own. For others, it meant being able to make decisions with their family, contribute to shared responsibilities, and stay connected to the community. These differences mattered. When programs and guidance matched how people already understood independence, they felt more confident and were more likely to use the support available to them. When independence was defined in a way that conflicted with their cultural values or family roles, those same resources often felt harder to apply.

Some grantee partners clearly see this dynamic in their programming. One organization working alongside tribal Native American communities learned early on that disability-focused outreach on its own was not enough. The challenge was not a lack of interest, but rather the language used to introduce SCI-related activities. The programs needed to connect to how people understood their place within the community. Instead of presenting adaptive sports as therapy or rehabilitation, the organization reframed participation around rebuilding physical strength, returning to ancestral lands, and stepping into leadership roles valued across generations. This shift worked because, in many tribal communities, identity is closely tied to land, responsibility, and continuity. When activities were introduced in this context, engagement increased, families became more involved, and referrals began coming through relatives and trusted community networks. Disability did not disappear, but it no longer stood apart from cultural identity. It became part of it.

Other grantee partners are addressing a related challenge through communication. They recognized that after SCI, information needs to be shared and is rarely processed by one person alone. Families often need to understand new concepts together, talk them through, and make decisions as a family. When information is only available in one language, that shared understanding can break down, especially in moments that already feel overwhelming. By developing educational resources in English, Spanish, and Chinese, organizations made it possible for individuals and families to learn side by side. A discussion in a language used at home allows people to move through complex topics, absorb information, express concerns, and ultimately, make decisions. When families could communicate naturally, they had a deeper understanding of the issues and were more confident applying what they learned to daily life.

Taken together, these efforts point to a clear lesson. One part of life is shaped by SCI but language, culture, and lived experience also play important roles. When this is kept as a part of the conversation, individuals and families are better able to navigate change in ways that feel real, grounded, and sustainable. The work we support at the Neilsen Foundation begins with this understanding. Because moving forward should never require leaving who you are behind.

There’s a particular kind of power that comes from being in a place where you don’t have to explain yourself. Where no one asks, “What happened?” first. Where you can show up as a whole person, curious, tired, funny, frustrated, hopeful, without being reduced to a single part of your story.

Across the world of spinal cord injury (SCI), shared experiences create those spaces. They might look like a peer mentor showing someone how to use a sports wheelchair for the first time. At times they’re quieter moments: talking honestly about mental health, body changes, or the emotional whiplash that can come with big life transitions. And sometimes they’re just about laughing, especially at the absurd comments people have heard in public more times than they can count.

These connections matter because they make room for both grief and growth, often at the same time. People can talk about what’s hard without being rushed toward positivity. They share moments of progress that carry real weight—the first solo trip, a routine that finally works, or a workaround that makes daily life more manageable. In these spaces, learning from someone who’s lived it turns “I didn’t know that was possible” into “Maybe I can try that too.”

One grantee partner is creating that kind of opportunity by launching and sustaining regional peer support groups that meet consistently each month, both in person and over Zoom. These groups bring together people living with SCI and caregivers to connect with trained peers, talk openly, and navigate real-life needs. This includes finding rehabilitation services and transportation, as well as locating adaptive equipment and mental health support. For many participants, especially those in areas with limited access to resources, these gatherings have become a steady source of understanding and support.

Other grantee partners focus on shared experience through action. Accessible community outings, adaptive recreation, and structured mentorship give people the chance to try things they once believed were out of reach, regardless of how long they’ve been living with SCI. From spending a day exploring museums with peers to building confidence through weekly mentorship and advocacy projects, these occasions help people re-engage with their communities and see themselves differently. Not because someone told them what was possible, but because they experienced it firsthand.

At the Craig H. Neilsen Foundation, we support organizations that create and protect these kinds of spaces. Because progress in the world of SCI doesn’t only come from innovation or research, it also comes from listening, learning, and recognizing the quiet power of being understood.

 

After a spinal cord injury (SCI), life takes on a new rhythm.

Things that once felt automatic—getting dressed, leaving the house, going to an appointment, planning for work—can now depend on many people and systems working together. Daily life requires more coordination, communication, and follow-through.

At the center of all of this is trust.

Trust that accessible transportation will arrive as scheduled.
Trust that a medical office understands how to safely help someone transfer from a wheelchair to an exam table. (Of course, that assumes the table is accessible in the first place.)
Trust that paperwork, approvals, and follow-up conversations will move forward so progress does not stall unexpectedly.

For people living with SCI, trust is a necessary part of moving through the world. When trust is present, daily life feels more stable, more predictable, and more open to possibility.

The Craig H. Neilsen Foundation funds nonprofit organizations working across healthcare, community programs, and spinal cord injury research. Their work shows how trust is built through everyday interactions.

 

Where Trust Takes Root in Medical Care and Rehabilitation

For many people with SCI, trust begins in medical settings.

Soon after injury, individuals rely on a wide range of healthcare professionals: doctors who oversee medical decisions, nurses who provide day-to-day support, therapists who help rebuild strength and skills, and rehabilitation teams who guide the transition back to daily life. These relationships form quickly, often during an overwhelming and unfamiliar time.

Trust grows when these teams are prepared and communicate clearly. When healthcare teams understand how SCI affects the whole body and daily routines. When they explain what is happening, what decisions are being made, and what the next steps will look like.

One grantee partner supported training for OB/GYN practices focused on reproductive and sexual healthcare for women with SCI. This work recognized an important reality—many clinicians want to provide high-quality care, but may not encounter SCI often enough to feel fully confident navigating practical details such as safe transfers, positioning during exams, or conversations about sexuality, family planning, and independence.

Providers worked through common scenarios before patients arrived, allowing them to prepare in advance rather than problem solve in the moment.

When medical teams are prepared, appointments tend to go more smoothly. Conversations feel more focused and respectful. Patients can spend less energy explaining logistics and more time engaging in their care. Trust grows when preparation is shared and supported.

 

Trust That Extends into Everyday Life

As people move beyond the hospital or rehabilitation setting, trust continues to play a central role.

Life after SCI often involves coordinating housing, transportation, insurance benefits, employment, and ongoing medical appointments. These systems are usually managed separately, which means things can slow or come to a halt if one piece is missing or unclear.

Community-based organizations help connect these parts of life.

One grantee partner supports individuals through a peer support program built around a community health worker model, led by people with SCI. A community health worker is someone who understands life with SCI firsthand and helps individuals navigate complex systems, such as housing applications, transportation arrangements, or follow-up appointments, by staying involved and helping keep things moving forward.

In one situation, a newly injured person was ready to begin inpatient rehabilitation, an intensive therapy program designed to support recovery and independence. However, rehab could not begin without a confirmed, safe place to live afterward. At the same time, the individual did not have a phone or reliable internet access, making it difficult to coordinate housing independently.

Through this program, staff worked with hospital staff, housing organizations, and community services to identify a temporary housing option. That support continued as longer-term plans were explored, allowing rehabilitation to begin as scheduled.

The same program also supported another individual several years after injury. After a long period without meeting others who shared similar experiences, they were invited to community events and introduced to peers living with SCI. Over time, those connections led to friendships, access to adaptive equipment, support in learning to drive, and confidence to explore new job opportunities.

In both cases, trust was built through continuous involvement. Program staff stayed engaged, followed through, and remained a consistent point of support over time.

 

Trust Strengthened Through Research

Trust also shapes how people with SCI engage with research, especially when studies influence healthcare practices, workplace policies, and community programs.

One grantee partner examined employment outcomes by studying how health insurance coverage, disability benefits, and out-of-pocket medical costs affect decisions about returning to work. The research explored practical, day-to-day questions: How do healthcare costs change when someone works more hours? What risks do people weigh when deciding whether to return to work? How do benefit rules influence those decisions?

People with SCI were involved throughout the study. They helped identify questions that reflected real concerns and reviewed survey language to ensure it matched how decisions are made. Testing the surveys in real-world settings helped ensure the findings were clear, relevant, and useful beyond academic research.

Another grantee focused on healthcare experiences of LGBTQ+ individuals with SCI by listening to both patients and clinicians. The study highlighted areas where clearer communication and additional training could strengthen trust and improve care experiences, offering insight into how healthcare environments can better support people with diverse identities alongside SCI.

Research like this helps translate lived experience into knowledge that healthcare systems, employers, and community organizations can use to improve how they support people with SCI.

 

Why Trust Matters

Trust is built over time. It grows when organizations are prepared, communicate clearly, and remain consistent in how they show up for the people they serve.

For people living with SCI, that kind of trust creates stability. It makes it easier to plan ahead, pursue goals, and move through daily life with greater confidence.