If ‘Technology Solutions’ are So Helpful, Why Do So Few Folks with Disabilities Have Access?
By Janet Shouse
In my role at the Vanderbilt Kennedy Center, I get to read lots of newsletters and lots of research articles. I recently came across a report called “Advancing Technology Access for People with Intellectual and Developmental Disabilities,” and I found it very interesting. Then I found out it was researched and written by someone I met a couple of years back at a conference that focuses on disability and technology, the Coleman Institute Conference on Cognitive Disabilities and Technology. That person was Shea Tanis. She’s pretty much a rock star in this field.
So, I asked Shea if I could interview her. She graciously said yes. I then learned she’s speaking at the Tennessee Department of Intellectual and Developmental Disabilities’ technology conference in two weeks.
Shea Tanis has helped advance access to technology solutions for people with intellectual disabilities for more than a decade through research, policy modernization, and innovative practices. She is nationally recognized for her expertise in cognitive accessibility, inclusive research, and advancing the rights of people with cognitive disabilities to technology and access to information. She is the lead researcher in Technology First; a systems change effort to support meaningful participation, social inclusion, and self-determination of people with cognitive disabilities through equitable access to technology. Ultimately, what drives Shea’s passion and commitment is her experience as a sibling to Coley, a strong personal advocate with an acquired traumatic brain injury.
Shea will be the keynote speaker at DIDD’s upcoming Enabling Technology Summit, Nov. 17-18, at the Millennium Maxwell Hotel in Nashville. This is an in-person event. If you wish to register, you can do so here: https://www.tn.gov/didd/for-consumers/enabling-technology/enabling-technology-summit.html This is a fabulous opportunity to learn about ways technology can help individuals with intellectual and developmental disabilities live, work and play more inclusively and more independently.
Q. Shea, you and your team recently released a report entitled “Advancing Technology Access for People with Intellectual and Developmental Disabilities,” which surveyed disability service providers on their perspectives about this issue. What was the most startling thing to you that your research found? What finding most affirmed what you already knew or suspected?
A. When looking at larger-scale technology implementation for individuals being served, providers and fiscal agents often look to evidence of cost efficiencies in addition to personal impact measures. The most startling outcome of our survey was that over half of the providers who responded (53%) indicated that they could already demonstrate cost efficiencies as a result of utilizing technology solutions. Thus, there is now national evidence of financial return on investment due to the use of technology solutions for individuals with disabilities.
One of the goals of this study, and the series of surveys that we have performed over the past few years, was to identify where the gaps in knowledge and information-sharing across agencies, systems, and consumers are. By using the evidence from our research with the National Association of State Directors of Developmental Disability Services in conjunction with our provider survey with the American Network of Community Options and Resources, we confirmed that the type of technologies that people had access to were tied directly to the technology categories funded by the Home and Community Based Waiver programs in the states (for example, durable medical equipment, assistive technology, etc.). The classes of technologies funded in waiver policies are often narrow and prescriptive and often do not include emerging and future technologies such as smartphones, computers, smart electronics, etc. This tells us that unless the policies are modernized, or other avenues of funding are identified, service providers will continue to offer only those technologies afforded through waiver services and not expand access to the breadth of technology solutions available for community living.
Q. Why did you focus your efforts on providers’ perspectives rather than on the individuals with IDD or their families and caregivers?
A. The ANCOR provider survey was one component of a larger scale study examining different perspectives of data to identify policy outcomes to practice. Our research began with the state ID/DD agencies, and then we worked with providers across the nation to determine their perspectives. We intend to conclude our research with families and individuals with lived experience. We had planned to survey advocates at the National Self-Advocates Becoming Empowered Conference in 2020, but that event was canceled due to COVID-19. We are hopeful that in 2022, we can join the national self-advocates in person to provide an accessible and inclusive approach to information gathering about technology use and barriers.
Q. What did you find are the top barriers to accessing technology solutions?
A. The top barriers to technology access and use are financial resources to acquire technology solutions and knowledge about available and accessible technologies for people with ID/DD and their families.
Q. Do you know if these same barriers exist for those who are not served by state-funded supports and services? We know only a fraction of people with IDD receive those types of supports and services.
A. As you mentioned, we know very little about technology use and access by those individuals and families outside of the public service delivery system. We can use data from national sources to give us a glimpse into the access and utilization of those outside of the system. For example, the most recent Pew Research data reports that “Americans with disabilities are three times as likely as those without a disability to say they never go online.” https://www.pewresearch.org/fact-tank/2021/09/10/americans-with-disabilities-less-likely-than-those-without-to-own-some-digital-devices/
As a field, we need to identify new methods and strategies for identifying the experiences of families and people with ID/DD outside the service delivery system to find out what doesn’t work and what does. There is a lot to learn about the resilience and techniques applied by people outside the public service system, including technology solutions.
Q. What are the most popular types of technology solutions?
A. This question can be separated by technology solutions used by organizations and technology solutions used by individuals. For organizations, remote support has become a popular technology solution to increase autonomy and address the direct support workforce crisis. For individual technology solutions, we are still looking at smartphones and computers in high demand.
Q. In the section on remote supports, the report says, “Myth-busting and clear communication is essential when introducing remote supports to caregivers and users.” Who or what group is best equipped to bust those myths?
A. Peers and family members who have had lived experience using technology solutions have the most authentic perspectives. We encourage communities of practice for providers and peer-to-peer learning models for self-advocates and family members to learn about real-life technologies applications.
Q. The report talks about digital literacy, agility, and resilience. What are those?
A. Across disciplines and domains, you will find a myriad of definitions provided. In my work, I differentiate the three accordingly:
- Digital literacy – “having the skills you need to live, learn, and work in a society where communication and access to information is increasingly through digital technologies.” (Western Sydney University, 2021)
- Digital agility – adapted from the business sector, digital agility is the ability to move quickly and fluidly across different technologies and tools.
- Digital resilience – is knowing what to do if something goes wrong, learning from experiences in a digital world, and recovering from challenges encountered by technology.
Q. What effects have the pandemic had on technology solutions?
A. The pandemic has made the digital/technological divide tangible. Before, technology was perceived as a luxury, but it became necessary to access life-saving information and services during the pandemic. It is clear how deep the digital divide is and the limitations to access that people with ID/DD experience.
Q. Is there anything that you think is important for either individuals with IDD or providers to know or consider in the use of technology solutions?
A. For technology solutions to be successful, it is essential to begin with a person-driven, goal-oriented process. Technology solutions must be identified to accomplish individual goals inclusive of social connection, entertainment, and well-being.
Q. Is there anything that you think is important for policymakers to know or consider in the use of technology solutions?
A. Policies need to be examined for their alignment with contemporary applications. New policies must be inclusive of not only the technology solutions of today, but those of tomorrow. This does not happen with a list of applicable technologies but policies that support a “process” for identifying technology solutions for living in modern society.
Q. Did your research look at differences in needs by disability or by geography?
A. We focused primarily on people with ID/DD across the nation.
Q. What do you see as the next BIG thing?
A. Mainstream cognitive accessibility!! Cognitive accessibility allows people with different cognitive strengths and approaches to navigate and use off-the-shelf products. We are finally starting to see mainstream technology developers and companies embed cognitive accessibility features into their products and services at the beginning of the design process through inclusive design, opening doors to people with ID/DD.
Q. Anything you want to add?
A. Thank you for the opportunity to share this informaiton with your audience.
You can see the full technology report here:
https://www.ancor.org/sites/default/files/advancing_technology_access_for_people_with_idd.pdf
I appreciate the work that Shea is doing both in research and in helping make technology solutions more accessible to people with disabilities. I’m looking forward to hearing her speak. If you have questions or concerns, you can contact me at janet.shouse@vumc.org. Thank you for reading!
Shea Tanis is a research professor at the University of Kansas Life Span Institute. She also serves as the principal investigator for the State of the States in Intellectual and Developmental Disabilities Longitudinal Data Project of National Significance funded by the Administration for Community Living. The project investigates the determinants of public spending for intellectual and developmental disability services and supports across the United States.