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Not Accessible: Federal Policies Unnecessarily Complicate Funding to Support Differently Abled Researchers. We Can Change That.

11.25.24 | 9 min read | Text by Stephen Jacobs & Kripa Kundaliya

Persons with disabilities (PWDs) are considered the largest minority in the nation and in the world. There are existing policies and procedures from agencies, directorates, or funding programs that provide support for Accessibility and Accommodations (A&A) in federally funded research efforts. Unfortunately, these policies and procedures all have different requirements, processes, deadlines, and restrictions. This lack of standardization can make it difficult to acquire the necessary support for PWDs by placing the onus on them or their Principal Investigators (PIs) to navigate complex and unique application processes for the same types of support. 

This memo proposes the development of a standardized, streamlined, rolling, post-award support mechanism to provide access and accommodations for PWDs as they conduct research and disseminate their work through conferences and convenings. The best case scenario is one wherein a PI or their institution can simply submit the identifying information for the award that has been made and then make a direct request for the support needed for a given PWD to work on the project. In a multi-year award such a request should be possible at any time within the award period. 

This could be implemented by a single, streamlined policy adopted by all agencies with the process handled internally. Or, by a new process across agencies under Office of Science and Technology Policy (OSTP) or Office of Management and Budget (OMB) that handles requests for accessibility and accommodations at federally funded research sites and at federally funded convenings. An alternative to a single streamlined policy across these agencies might be a new section in the uniform guidance for federal funding agencies, also known as 2 CFR 200.

This memo focuses on Federal Open Science funding programs to illustrate the challenges in getting A&A funding requests supported.  The authors have taken an informal look at agencies outside of science and technology funding.  We found similar challenges across federal grantmaking in the Arts and Humanities, Social Services, and Foreign Relations and Aid entities. Similar issues likely exist in private philanthropy as well.

Challenge and Opportunity

Deaf/hard-of-hearing (DHH), Blind/low-vision (BLV), and other differently abled academicians, senior personnel, students, and post-doctoral fellows engaged in federally funded research face challenges in acquiring accommodations for accessibility. These include, but are not limited to: 

Having these services available is crucial for promoting an inclusive research environment on a larger scale. 

Moving to a common, post-award process:

Such a process might follow these steps below. The example below is from the National Science Foundation (NSF), but the same, or similar process could be done within any agency:

  1. PI receives notification of grant award from NSF. PI identifies need for A & A services at start, or at any time during the grant period
  2. PI (or SRS staff) submits request for A&A funding support to NSF. Request includes NSF program name and award number, the specifics of the requested A & A support, a budget justification and three vendor quotes (if needed)
  3. Use of funds is authorized, and funding is released to PI’s institution and acquisition would follow their standard purchasing or contracting procedures
  4. PI submits receipts/ paid vendor invoice to funding body
  5. PI cites and documents use of funds in annual report, or equivalent, to NSF

Current Policies and Practices

Pre-Award Funding

Principal Investigators (PIs) who request A&A  support for themselves or for other members of the research team are sometimes required to apply for it in their initial grant proposals. This approach has several flaws. 

First and foremost, this funding process reduces the direct application of research dollars for these PIs and their teams compared to other researchers in the same program. Simply put, if two applicants are applying for a $100,000 grant, and one needs to fund $10,000 worth of accommodations, services, and equipment out of the award, they have $10,000 less to pursue the proposed research activities.  This essentially creates a “10% A & A tax” on the overall research funding request.

Lived Experience Example

In a real world example, the author and his colleague, the late Dr. Mel Chua, were awarded a $60,000, one year grant to do a qualitative research case study as part of the Ford Foundation Critical Digital Infrastructure Research cohort.  As Dr. Chua was Deaf, the PIs pointed out to Ford that $10,000 worth of support services would be needed to cover costs for 

We communicated the fact that spending general research award money on those services would reduce the research work the funds were awarded to support.  The Ford Foundation understood and provided an additional $10,000 as post-award funding to cover those services. Ford did not inform the PIs as to whether that support came from another directed set of funds for A&A support or from discretionary dollars within the foundation.

Second, it can be limiting for the funded project to work with or hire PWDs as co-PIs, students, or if they weren’t already part of the original grant proposal. For example, suppose a research project is initially awarded funding for four years without A&A support and then a promising team member who is a PWD appears on the scene in year three who would require it. In this case, PIs then must: 

Post-Award Funding

Some agencies have programs for post-award supplemental funding that address the challenges described above. While these are well-intentioned, many are complicated and often have different timelines, requirements, etc. In some cases, a single supplemental funding source may be addressing all aspects of diversity, equity and inclusion as well as A&A.  The needs and costs in the first three categories are significantly different than in the last. Some post-award pools come from the same agency’s annual allocation program-wide. If those funds have been primarily expended on the initial awards for the solicitation, there may be little, or no money left to support post-award funding for needed accommodations. The table below briefly illustrates the range of variability across a subset of representative supplemental funding programs. There are links in the top row of the table to access the complete program information. Beyond the programs in this table, more extensive lists of NSF and NIH offerings are provided by those agencies. One example is the NSF Dear Colleague Letter Persons with Disabilities – STEM Engagement and Access.

ProgramNSF STEM Access for Persons with Disabilities (STEM-APW D) NIH Grants GuideNSF PAPPG FASED
(Under Section E #7)
NIH Support for Scientific Conferences (R13 and U13)US – NSF BIO MCB Guide Proposals
Streamlined processNoNoYesNoNo
Specifically focused on Accessibility/A accommodationYesNoYesNoNo
Application and award timeline2 months before the funds are needed3-4 months from application to award. 10-month window for applying – October to MayIf part of the PAPPG, same as the proposal date.
If supplemental 2 months
8-9 months from application to awardPart of a full event proposal
Funding Caps?Yes, $100,000VariableMust not be a major component of the total budgetVariableConferences $5,000 to $20,000; Workshops, $50,000 to $100,000
Conf Support Only?NoNoNoYesYes
Submitted by PIYes or by eligible organizations on behalf of PIsYesYesYesYes
Special Procedures or Approvals?YesYesYesYesNo

Ideally these policies and procedures, and others like them, would be replaced by a common, post-award process. PIs or their institutions would simply submit the identifying information on the grant that had been awarded and the needs for Accommodations and Accessibility to support team members with disabilities at any time during the grant period.

Plan of Action

The OSTP, possibly in a National Science and Technology Council interworking group process,, should conduct an internal review of the A&A policies and procedures  for grant programs from federal scientific research aligned agencies. This could be led by OSTP directly or under their auspices and led by either NSF or the National Institute of Health (NIH).  Participants would be relevant personnel from DOE, DOD, NASA, USDA, EPA, NOAA, NIST and HHS, at minimum. The goal should be to create a draft of a single, streamlined policy and process, post-award, for all federal grant programs or a new section in the uniform guidance for federal funding agencies.

There should be an analysis of the percentages, size and amounts of awards currently being made to support A&A in research funding grant programs. It’s not clear how the various funding ranges and caps listed in the table above were determined or if they meet the needs. One goal of this analysis would be to determine how well current needs within and across agencies are being met and what future needs might be. 

A second goal would be to look at the level of duplication of effort and scope of manpower savings that might be attained by moving to a single, streamlined policy. This might be a coordinated process between OMB and OSTP or a separate one done by OMB. No matter how it is coordinated, an understanding of these issues should inform whatever new policies or new additions to 2 CFR 200 would emerge. 

A third goal of this evaluation could be to consider if the support for A&A post-award funding might best be served by a single entity across all federal grants, consolidating the personnel expertise and policy and process recommendations in one place. It would be a significant change, and could require an act of Congress to achieve, but from the point of view of the authors it might be the most efficient way to serve grantees who are PWDs. 

Once the initial reviews as described above, or a similar process is completed, the next step should be a convening of stakeholders outside of the federal government with the purpose of providing input to the streamlined draft policy. These stakeholder entities could include, but should not be limited to, the National Association for the Deaf, The American Foundation for the Blind, The American Association of People with Disabilities and the American Diabetes Association. One of the goals of that convening should be a discussion, and decision, as to whether a period of public comment should be put in place as well, before the new policy is adopted. 

Conclusion

The above plan of action should be pursued so that more PWDS will be able to participate, or have their participation improved, in federally funded research. A policy like the one described above lays the groundwork and provides a more level playing field for Open Science to become more accessible and accommodating.It also opens the door for streamlined processes, reduced duplication of effort and greater efficiency within the engine of Federal Science support.

Acknowledgments 

The roots of this effort began when the author and Dr. Mel Chua and Stephen Jacobs received funding for their research as part of the first Critical Digital Infrastructure research cohort and were able to negotiate for accessibility support services outside their award. Those who provided input on the position paper this was based on are: 

This action-ready policy memo is part of Day One 2025 — our effort to bring forward bold policy ideas, grounded in science and evidence, that can tackle the country’s biggest challenges and bring us closer to the prosperous, equitable and safe future that we all hope for whoever takes office in 2025 and beyond.

Frequently Asked Questions
Why are conferences and convenings included in the table above?

Based on the percentage of PWDs in the general population size, conference funders should assume that some of their presenters or attendees will need accommodations. Funding from federal agencies should be made available to provide an initial minimum-level of support for necessary A & A. The event organizers should be able to apply for additional support above the minimum level if needed, provided participant requests are made within a stated time before the event. For example, a stipulated deadline of six weeks before the event to request supplemental accommodation, so that the organizers can acquire what’s needed within thirty days of the event.

Are accommodations different for conferences and convenings?

Yes, in several ways. In general, most of the support needed for these is in service provision vs. hardware/software procurement. However, understanding the breadth and depth of issues surrounding human services support is more complex and outside the experience of most PIs running a conference in their own scientific discipline.


Again, using the example of DHH researchers who are attending a conference. A conference might default to providing a team of two interpreters during the conference sessions, as two per hour is the standard used. Should a group of DHH researchers attend the conference and wish to go to different sessions or meetings during the same convening, the organizers may not have provided enough interpreters to support those opportunities.


By providing interpretation for formal sessions only, DHH attendees are excluded from a key piece of these events, conversations outside of scheduled sessions. This applies to both formally planned and spontaneous ones. They might occur before, during, or after official sessions, during a meal offsite, etc. Ideally interpreters would be provided for these as well.


These issues, and others related to other groups of PWDs, are beyond the experience of most PIs who have received event funding.

Are there existing guides or other publications to support convenings PIs?

There are some federal agency guides produced for addressing interpreting and other concerns, such as the “Guide to Developing a Language Access Plan” Center for Medicare and Medicaid Services (CMS). These are often written to address meeting needs of full-time employees on site in office settings. These generally cover various cases not needed by a conference convener and may not address what they need for their specific use case. It might be that the average conference chair and their logistics committee is a simply stated set of guidelines to address their short-term needs for their event. Additionally, a directory of where to hire providers with the appropriate skill sets and domain knowledge to meet the needs of PWDs attending their events would be an incredible aid to all concerned.

How could these needs be addressed?

The policy review process outlined above should include research to determine a base level of A & A support for conferences. They might recommend a preferred federal guide to these resources or identify an existing one.