From Support Service Providers to CoNavigators: How DeafBlind-Created Services Advance Autonomy, Workforce Development, and the Principle of “Nothing About Us Without Us”
October 6, 2026
By Morrison
Abstract
The evolution of Support Service Provider (SSP) programs, now increasingly referred to as CoNavigator (CN) programs within the DeafBlind community, represents one of the clearest examples of disability-led innovation in the United States. Originally developed through DeafBlind advocacy to address barriers that traditional deaf and blind service systems failed to resolve, these programs were designed to promote autonomy, access, and full community participation. Drawing upon historical context and personal observations from programs across multiple states, this essay argues that DeafBlind-led programs consistently achieve stronger outcomes because they are rooted in lived experience, cultural competency, and community accountability. It further explores how CoNavigator programs serve not only as access services but also as critical workforce development opportunities that create pathways for DeafBlind leadership, employment, and self-determination. As National Disability Employment Awareness Month reminds us of the importance of disability inclusion, the future of DeafBlind services must focus on expanding DeafBlind-led leadership and employment opportunities rather than replacing DeafBlind professionals with sighted administrators. Ultimately, the success of these programs demonstrates that the most effective DeafBlind services are those designed, directed, and governed by DeafBlind people themselves.
As we observe National Disability Employment Awareness Month in the United States, I find myself reflecting on a question that continues to surface across the country: Why are so many DeafBlind service programs still designed, administered, and led by people who are not DeafBlind?
This question is significant because the history of DeafBlind services already provides the answer. The most effective programs were not created by state agencies, rehabilitation systems, universities, or professional service providers. They were created by DeafBlind people themselves. This is a fact.
The origins of what many states still call Support Service Provider (SSP) programs can be traced back to advocacy by the DeafBlind community, particularly through the American Association of the Deaf-Blind (AADB). DeafBlind people recognized a significant barrier to full participation in community life. At a time, they could not fully access their own conferences without sighted guides who could provide environmental information, mobility support, and communication access.
In response, the DeafBlind community developed a solution. What began as a system to support DeafBlind individuals attending DeafBlind conferences evolved into a broader framework for access, autonomy, interdependence, and civic participation. Over time, SSP services expanded beyond conferences and became a vital resource for navigating healthcare, employment, education, transportation, government services, and community engagement. These programs were born from a DeafBlind understanding of DeafBlind needs. They were not created by professionals looking for a problem to solve. They emerged because DeafBlind people identified barriers in their own lives and developed practical solutions to address those barriers.
As the service model matured, many within the DeafBlind community began reexamining the language and philosophy surrounding SSPs. Increasingly, the term CoNavigator emerged as a more accurate reflection of the relationship between the DeafBlind individual and the sighted person working with them to attain access.
The distinction is significant. A CoNavigator is not a caretaker, personal care assistant, or decision-maker. A CoNavigator provides environmental information, communication access, and mobility and orientation support while recognizing that the DeafBlind person remains fully in charge of determining where they go, what information they need, and what decisions they make. This model reflects partnership rather than dependency; this practice relies on the concept of interdependence through co-presence and contact space where the DeafBlind person directs the experience. Through this framework, the CoNavigator provides access to the information necessary for the DeafBlind person to exercise autonomy and self-determination.
By contrast, the traditional SSP mindset can, intentionally or unintentionally, position the sighted person as the primary decision-maker, the person in lead. Instead of sharing information that enables autonomy, the SSP often assumes a helping role that may limit DeafBlind autonomy. Rather than working alongside DeafBlind individuals, the model can drift toward doing things for them rather than doing things with them.
For many members of the DeafBlind community, this distinction is why the term CoNavigator has gained acceptance, even while older terminology remains embedded in state contracts, regulations, and legislation.
Through my observations of programs across the United States, they reveal a clear pattern. Programs that are designed and led by DeafBlind people consistently maintain stronger community trust, greater cultural and linguistic competency, and deeper commitments to DeafBlind autonomy. They also provide better service outcomes. Programs led by those with lived experience understand the importance of diverse communication modalities the community uses that impacts their access – tactile communication, Protactile Language, close-vision signing, tracking. These are consumer-directed services… These are not abstract concepts. They are daily realities that only DeafBlind people will understand and know what’s needed in terms of access. Moreover, programs led by DeafBlind people are better able to get funding for the program compared to those not.
Organizations such as the DeafBlind Service Center in Washington State and the DeafBlind Community Access Network in Massachusetts demonstrate what is possible when DeafBlind leadership remains central to program development and delivery. These organizations emerged from DeafBlind advocacy and continue to reflect DeafBlind priorities. Their success is not accidental or by luck. It stems from leadership that understands firsthand what DeafBlind access requires, and know how to advocate for them.
Similarly, the Florida DeafBlind Association’s Florida CoNavigator Program demonstrates the power of community-driven services. Despite receiving limited to no public funding and relying heavily on volunteers, the program remains grounded in DeafBlind leadership and DeafBlind priorities. Even with limited resources, it exemplifies the principle that DeafBlind people are best positioned to define services for their own community.
At the same time, my observations suggest that programs often change when DeafBlind leadership is removed. When services become absorbed into larger disability systems, interpreting agencies, rehabilitation programs, or organizations led primarily by sighted professionals, DeafBlind priorities often become secondary concerns. The focus shifts away from autonomy and toward compliance, and just meeting the bare minimum of those compliance. Community relationships weaken. Decisions begin to reflect administrative assumptions rather than lived experience.
Louisiana provides an example that many within the DeafBlind community have discussed over the years. When the program was led by a DeafBlind individual, community priorities remained central to its mission. Following transitions in leadership, many community members observed changes in the program’s direction and culture. Similar concerns have emerged in states where DeafBlind services are administered through larger organizations whose primary focus lies elsewhere.
Several states currently operate DeafBlind service programs through organizations that also provide interpreting services or broader disability services. While these organizations may offer valuable support, DeafBlind access often becomes only one component of a much larger mission. As a result, the unique needs of the DeafBlind community can become diluted or overlooked. And the quality of services for the DeafBlind community also becomes diluted. Instead of having a program led by a DeafBlind person that can ensure quality services by providing adequate and top notch training (such as what DBCAN in Massachusetts and DBSC in Washington), the training is rooted in vidism, distantism, and ableism. This impacts the quality of service where the concept of SSPs are back, as if we are going backwards.
Another persistent misunderstanding among policymakers also contributes to this problem. Many continue to believe DeafBlind people can simply access services through systems designed for deaf individuals or systems designed for blind individuals. Yet decades of experience demonstrate otherwise. There’s no set systems, commission designed solely for our DeafBlind community. Our community continues to be tossed between the two or get lost in one of the two systems (deaf services or blind services).
Being DeafBlind is not merely the sum of deafness and blindness. It is an experience that requires specified designs and approaches to communication, mobility, information access, and community engagement. When DeafBlind individuals are directed solely toward deaf services, critical visual information may remain inaccessible. When directed solely toward blind services, essential communication support may be unavailable. Neither system adequately addresses the intersection of both realities. Yet, this remains unchanged…
This is precisely why the DeafBlind community fought to establish CoNavigator programs. Existing systems were not meeting DeafBlind needs, and DeafBlind people responded by creating something better.
As we celebrate National Disability Employment Awareness Month, however, another issue deserves equal attention. Too often, discussions about DeafBlind services focus exclusively on consumers while ignoring workforce development. Yet DeafBlind-led programs are not simply access programs. They are also employment programs, leadership programs, and economic development opportunities. For decades, disability systems have focused on helping DeafBlind people obtain employment. Rarely do they focus on creating career pathways within the very systems designed to serve DeafBlind people. This contradiction is difficult to ignore.
CoNavigator programs offer opportunities for DeafBlind people to become coordinators, trainers, advocates, mentors, administrators, researchers, and executive leaders. These positions are important because they ensure DeafBlind expertise remains embedded within DeafBlind services. They create opportunities for future generations of DeafBlind leaders. They build institutional knowledge rooted in lived experience. Most importantly, they place DeafBlind people in positions where decisions are made rather than merely consulted upon. Unfortunately, many systems continue to follow a familiar pattern. DeafBlind people are invited to advise, consult, provide feedback, to sit on committees. Yet leadership positions, management roles, and executive authority often remain concentrated in the hands of sighted professionals.
This approach contradicts the very principles upon why and how these programs were founded.
The solution is not to replace DeafBlind leaders with sighted leaders. Or even allow sighted folks to get in the way… The solution is not to remove DeafBlind professionals from positions of influence because it may be administratively convenient. The solution is to invest in growing the DeafBlind workforce and strengthening DeafBlind leadership pipelines.
If a state can fund CoNavigator services, it can fund DeafBlind coordinators. If a state can fund service delivery, it can fund DeafBlind managers. If a state can fund advocacy programs, it can fund DeafBlind executives. The question is not whether qualified DeafBlind professionals exist. The question is whether systems are willing to invest in them and do so without biases or favoritism.
The disability rights movement has long embraced the principle of “Nothing About Us Without Us.” For the DeafBlind community, that principle must extend beyond consultation and into leadership. Nothing About Us Without Us means DeafBlind people should be designing programs and leading them. It means DeafBlind people should be directing programs. It means DeafBlind people should be sitting in executive offices, managing budgets, shaping policy, supervising staff, and determining the future of DeafBlind access.
The history of SSPs and CoNavigators tells a simple story. DeafBlind people created these services because no one else understood their needs. DeafBlind people fought for these services because existing systems failed them. DeafBlind people refined these services because lived experience provided insights that outside professionals could not replicate. That history offers an equally important lesson for the future. If we truly want effective DeafBlind programs, we must invest in DeafBlind leadership. If we truly value disability employment, we must create pathways for DeafBlind professionals to lead. If we believe in self-determination, we must stop treating DeafBlind leadership as a choice. We must make it a priority. The most successful DeafBlind programs are not simply programs that serve DeafBlind people. They are programs that enable and ensure DeafBlind people lead them.
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