February 2025 Advocacy Update
There’s a lot of “new” going around in the advocacy and policy world. January 1st marked the beginning of the 2025-2026 Massachusetts legislative session, January 3rd marked the beginning of the 2025-2026 Congress, which has shifted from a split control to a Republican majority in both the House and Senate, and January 20th marked the beginning of President Trump’s second four year term in office. Before we jump into the nitty gritty of the rapidly changing political scene, let’s take a moment to honor Black History Month and celebrate the contributions black advocates have made - and continue to make - to the Disability Rights Movement.
Harriet Tubman, Brad Lomax, Donald Galloway, Joyce Ardell Jackson, Jazzie Collins, Fannie Lou Hamer, Claudia Gordon, Lois Curtis, Vilissa Thompson, Barbara Jordan, and Johnnie Lacy are just a few notable advocates past and present working tirelessly for disability rights and justice. Without them, the positive strides that have been made would not have been possible. Without them, a future filled with equity, justice, and inclusion will not be possible. Read more about the work of black disabled advocates here, here and here.
Now onto a synopsis of the national and local policy changes from January. President Trump has made rapid fire changes with a flurry of executive orders and presidential actions in the past two weeks, and it’s likely this is only the beginning. Probably the most well covered was the memorandum declaring a federal funding freeze that has since been rescinded. The original memorandum resulted in multiple court cases and a federal judge issuing an administration stay pausing the freeze until February 3rd, 2025. Despite the fact that this memorandum has been rescinded, the administration has indicated that “efforts to ‘end the egregious waste of federal funding’ will continue”. Reduced federal funding would likely negatively impact many of the programs that benefit individuals with disabilities, unless state-level funding can fill the gaps. One of the most likely reductions in federal funding will come in the form of Medicaid cuts. Check out the ARC of Massachusetts' Medicaid cuts fact sheet to learn more, or refer to our previous advocacy newsletter.
Additionally, he has done away with federal Diversity, Equity, Inclusion, and Accessibility (DEIA) programs in the federal government, has strongly encouraged private organizations, non-profits, and foundations to do the same, has stated that K-12 schools with DEIA related programs or curriculum will lose federal funding and support, and has stated that DEIA efforts were to blame for a tragic plane crash. DEIA initiatives have been critical to integrating people with disabilities into the workforce, and removing barriers to accessing information and services that everyone has a right to, regardless of disability status. Not only that, but including people with disabilities in the workforce is good for business.
Perhaps it’s old news by now, but President Trump also directed all federal health agencies to pause all external communications with the public that are not directly related to emergencies from January 21st until February 1st. The agencies affected by the communications freeze include all agencies under the Department of Health and Human Services including: the Federal Drug Administration (FDA), Centers for Disease Control and Prevention (CDC), Centers for Medicare and Medicaid (CMS), National Institute of Health (NIH), Administration for Community Living (ACL), Office for Civil Rights, among others. Additionally, press releases and communications from the Department of Transportation were unofficially paused until January 28th, and all press releases prior to that date are no longer accessible on the website. As a result of these communication freezes, a number of webinars advertised in our last newsletter have been indefinitely postponed.
Of course, the federal government isn’t the only place there’s been a significant amount of action in the past few weeks. On January 22nd, Governor Healey filed her version of the Fiscal Year 2026 Budget, which unlike FY2025’s proposed budget, doesn’t include any cuts in funding to the MassHealth PCA program. However, the budget does tie spending for the PCA program to the health care cost growth benchmark (HPC benchmark), in an effort to manage costs. Additionally, this cost management doesn’t consider the rapidly aging Massachusetts population which will increasingly depend on the program. Limiting the growth of the PCA program to the HPC benchmark will almost certainly result in future budget cuts and reductions in services for those who need it most.
Affordable housing was another key issue last year. This year, the Alternative Housing Voucher Program, which provides housing vouchers to individuals with disabilities between the ages of 18 and 60, received a $3 million dollar increase. However, according to the Disability Policy Consortium, this amount will only maintain the program as it is, rather than expand it – despite the desperate need for financial assistance in affording accessible housing. The state budget should reflect the needs of individuals with disabilities by funding the programs they rely on, especially as federal funding remains uncertain. Without federal support, we’ll be left to rely solely on state funding to meet these critical needs.
So, what can you do to get involved?
Contact (or visit) your state or federal legislators:
A phone call or email can take less than 10 minutes and have a big impact. Find your elected officials here. Want to make an even bigger impact? Visit the Statehouse and talk to your legislators in person.
Your message doesn’t have to be perfectly crafted to be effective.
Politely share who you are, why you’re contacting them, and the impact the issue has on you or your community.
For more tips click here.
Pick an issue you care about and work towards making a difference:
Learn more about the issue! Is there legislation related to the issue you care about? Are there organizations already working on this issue that you can join?
Contribute to a study, survey, or other input opportunity
Attend an advocacy-related event
This could be a webinar, a committee meeting, a hearing, a rally, a protest, or a meeting with others in your community to discuss how to support each other! Scroll to the events section of this newsletter for inspiration.
Volunteer with an organization that shares your beliefs
Want to contribute to SCIboston’s advocacy program? Contact Vita at vita@sciboston.org, for more information on the type of help we’re looking for.
Donate
Federal Administration News:
Service Cuts: Worries Grow in Mass. Over Federal and State Service Cuts, NBC Boston
Health Care: Health Care for Low-Income Mass. Families Could be Target of Trump Administration, WBUR
Diversity, Equity, Inclusion, and Access (DEIA): Trump Calls DEI Programs 'illegal.' He Plans to End Them in the Federal Government, WBUR and Federal Agencies Bar Black History Month and Other 'special observances', NBC
Long-term Care Workforce: Trump Backs Special Tech Work Visas. What About Nurses And Care Aides?, Forbes
Transportation:
Local: Need to report an unshoveled bus stop? This list outlines who to contact for each bus stop. You can also receive winter weather updates from the MBTA by signing up for T-Alerts. The MBTA will post alerts for each bus ling that is running on a snow route.
This year the MBTA has big plans to improve accessibility! The plans include: making North Wilmington, Natick Center, Winchester, and Worcester Union Commuter Rail stations fully accessible, at least another eight commuter rail stations mostly accessible through the construction of small freestanding accessible platforms, and “hands-free” faregate technology will be piloted at ten locations.
State: Governor Healey has signed a bill into law that would allow the MBTA and other regional transit authorities to use bus-mounted cameras to fine anyone stopped in bus lanes and stops. The new law establishes a maximum fine of $125 for bus lane violations captured by camera, along with a standard $100 fine for violations at bus stops. The passage of this bill will make it significantly safer for people with disabilities to ride public transit by ensuring stops stay clear. This will reduce the need for riders to board and exit buses from the street. Revenue from the fines will go into a transportation trust fund.
National: The U.S. Department of Transportation (US DOT) has released a final rule addressing the safety of airline passengers with disabilities and strengthening the Air Carrier Access Act. This final rule went into effect January 16th, 2025, but still needs to be implemented. The new rule requires more vigorous training standards for airline employees and all mobility devices to be returned in the same condition that they were received. Read about the additional requirements here.
If you have experienced treatment by an airline that violates the Air Carrier Access Act, please file a complaint with the Department of Transportation’s Aviation Consumer Protection Division. If you’re unsure of your rights while flying, read the Airline Passengers with Disabilities Bill of Rights.
Related: United Spinal has a resource page on how to make your transportation complaint count. This page includes instructions on filing complaints for all types of transportation, including air travel, buses, light rail, paratransit, and taxis.
In the Media:
Workplace Accessibility: How Scientists with Disabilities are Making Research Labs and Fieldwork More Accessible, Boston Globe
Housing: State Accessibility Panel Weighs Conflict Between Two Worthy Aims, Commonwealth Beacon and Public Housing Residents Say Broken Elevators Leave Them Trapped in Their Homes, NBC Boston
Emergency Preparedness: California Wildfires: ‘disability adds layer of profound vulnerability’
New Laws: Governor Healey Signs Laws Lowering Health Care Costs and Strengthening Oversight, mass.gov
Private Equity: New Harvard Study Raises Concerns about Hospital Control by Private Equity, WBUR and How to Prevent the Next Steward Health Care Crisis, Boston Globe Opinion
Input Opportunities:
Video Conferencing Accessibility Features:
The FCC is seeking comments on further changes to improve access to video conferencing for people with disabilities. The FCC is asking for input on: text-to-speech and speech-to-speech functionality; automatic sign language interpretation; functionality for people with cognitive or mobility disabilities, as well as additional amendments to the Telecommunications Relay Services (TRS) rules. File comments here by February 3rd, 2025. All filings must include: “CG Docket Nos. 10-213, 03-123, and 23-161”. Learn more here and here.
Exempt MassHealth CommonHealth Members from Estate Recovery:
Massachusetts recently announced that it intends to submit a request to the Centers for Medicare and Medicaid to amend the MassHealth Section 1115 Demonstration, which is what allows for the CommonHealth program. This request asks to “waive all estate recovery requirements for all CommonHealth members”. The Executive Office of Health and Human Services is accepting feedback on this proposed amendment through 5 p.m. on February 20th, 2025. Please read this PDF on how to comment in writing or via a public listening session in person, or via zoom. Read the Demonstration Amendment Request and the Fact Sheet.
Disability Health Research:
The National Institutes of Health (NIH) is developing the NIH Strategic Plan for Disability Health Research FY26-FY30. This plan will identify themes and goals that advance research on the health of people with disabilities. Some of the main goals include: how to maintain NIH’s relationship with the disability community, how to include people with disabilities in the research process, and how to develop a scientific workforce that includes researchers with disabilities.
The NIH is looking for feedback on the draft of this plan through a Request for Information (RFI). Please review the RFI and then use the online submission form to provide feedback. You may also submit your response via email to disabilityresearch@nih.gov. Please include “RFI Response” in the subject line of your email. All submissions are due by March 12, 2025.
Review Health Care Professional Trainings:
The Massachusetts Health and Disability Program of the Department of Public Health is looking for feedback on two health care provider trainings:
These trainings are intended to help “providers reduce barriers and improve access to health care and preventative services. In order to provide feedback, please take either (or both!) training and then submit a feedback form here.
MBTA Elevator Screen Pilot Program:
The MBTA has begun a pilot program that aims to provide real-time information through new digital screens at elevators. These screens will inform riders about alternative paths if the current elevator is out of service, notify riders of planned outages at the current elevator, and provide information about other outages across the system. If you have seen the new screens at Forest Hills Station and would like to provide feedback, fill out their project feedback form.
Studies:
Share your pregnancy health care experiences!
The Lurie Institute for Disability Policy at Brandeis University is seeking to interview participants with physical disabilities about their pregnancy health care experiences as Black and Hispanic/Latinx/a women. Interviews will be offered in English or Spanish over Zoom. Participants must have had a baby in the past 10 years, and be between 21 and 55 years old. Learn more or sign up here.
Share about your experiences with One Care Care Coordinators!
The Disability Policy Consortium (DPC) and Brandeis University's Community Living Policy Center want to learn more about One Care member's experiences with Care Coordinators. Interviewees will receive a $50 gift card for their time. Click here to register.
Surveys:
The United Spinal Association would like to know more about you as Advocates! This is an opportunity to share how you’re involved in advocacy, provide feedback on how they can improve, and express which issues you’re most passionate about. The information you provide will help them advocate for all wheelchair users and guide programming for 2025.
The Christopher and Dana Reeve Foundation would like to know which topics and public policy issues are the most important to you! The responses will help to inform which policies they will prioritize in the coming year. This survey will take about 10 minutes to complete.
The City of Boston Office of Emergency Management (OEM) has put out a Household Emergency Preparedness Survey to better understand how prepared residents are for major emergencies and natural disasters. Feedback from the disability community on this survey is critical to ensuring the needs of people with disabilities are prioritized. All survey questions are optional, and your answers will remain anonymous.
The Boston Region MPO was awarded funding to create a regional safe streets plan, which they’ve called the Vision Zero Action Plan. Now, they’re looking for input from residents and visitors to the Boston region on transportation safety. The survey will take roughly 10 minutes to complete and responses are anonymous.
Wheelchair Training Courses from MSKTC:
The Model Systems Knowledge Translation Center (MSKTC) has created two training modules on safe wheelchair transfers and wheelchair maintenance. These free resources can be found here.
New Medicare Coverage for Bowel Management Devices!
Medicare will now cover bowel management devices for neurogenic bowel. According to the United Spinal Association, “Any transanal irrigation system with a rectal catheter that has a sealing function (balloon or cone-based catheters that replace the function of malfunctioning bowels) is now classified as a prosthetic device under Medicare.”
Events*:
*(all events are free unless otherwise noted)
CDRF: Regional Champions Webinar:
Tuesday, February 18th, 2025 from 2:00 - 3:00 pm, on Zoom.
Please register here.
Join the Christopher and Dana Reeve Foundation for their quarterly Regional Champions webinar. Their advocacy and policy team will provide a legislative update from Washington, DC, share their 2025 Public Policy Priorities, and discuss their 2024 grassroots advocacy and public policy successes.
United Spinal Association’s Advocacy LIVE:
Tuesday, February 18th, 2025 from 1:00-2:00 pm, on Zoom.
Please register here to attend.
Interested in grassroots advocacy? The United Spinal Association holds a monthly meeting for advocates to collaborate with advocates from across the United States on Federal, state, and local issues affecting the disability community. Top priorities include wheelchair repair, air travel, SSI asset limits, parking, emergency preparedness, care support, and housing. Advocacy LIVE meetings are held monthly on the third Tuesday, alternating each month from 1-2 PM and 5-6 PM.
Interested in specific issues? Join one of United Spinal’s working groups! Groups include: outdoor access, accessible parking, accessible transportation, emergency preparedness, and care support. Complete this form to join any of the groups.
CANCELLED: ACL Grassroots Project: Tools and Tips for Commenting on 1915(c) Waivers:
Wednesday February 19th, 2025 from 2:00-3:30 pm, on Zoom.
Please register here.
Join ACL’s Grassroots Project for a webinar where National Health Law Program (NHeLP) experts will come together with individual advocates to explore the experience of commenting on the 1915(c) waiver. ACL’s Grassroots Project provides people with disabilities and their support networks access to tools, resources, information, and peer-to-peer networking to help them ensure the perspectives, priorities, and preferences of disabled people are reflected in disability policies and service systems in their states and communities. ASL interpretation, Spanish interpretation, and live English captions, will be provided during the webinar.
February RTAG General Meeting:
Thursday, February 27th, 2025 from 3:00-5:30 pm, on Zoom
Register here.
Riders’ Transportation Access Group (RTAG) is committed to improving the accessibility standards of transportation for people with disabilities and older people. The right to use public transportation is “a fundamental component to inclusion in our community”. Join the monthly general meeting to discuss with the MBTA, Department of System-Wide Accessibility and The RIDE. American Sign Language will be provided for this meeting. Other accommodations available upon request.
Housing:
Looking for accessible, affordable housing? The Metrolist is a list of units currently available to rent or for sale in the Greater Boston area. You can search by location, accessibility, number of bedrooms, amenities, income eligibility, and application type. The Massachusetts Housing Navigator is a list of affordable rental housing across the state. You can search by location, accessibility, number of bedrooms, amenities, age eligibility, availability, and affordability.
PCA/Caregivers:
The Kessler Foundation has developed a free course to train PCAs on caring for people with spinal cord injuries, in partnership with rehab centers, disability organizations, and community members. The course contains lessons on the basics of physical functions affected by SCI, personal and social challenges created by SCI, common misunderstandings about SCI, and complications of SCI. Most of the material is offered in a video format. The course takes approximately two hours to complete, but does not need to be completed all at once. Click here to enroll.
Long-term Supports and Services:
The Community Living Equity Data Dashboard provides national- and state-level data estimates of who needs Long-Term Services and Supports (LTSS), who receives Medicaid LTSS (institutional services and Home and Community-Based Services), and disparities in access to Home and Community-Based Services (HCBS).
Travel:
Traveling with a wheelchair can pose some unique challenges. This is why Permobil has put together some checklists and guides on how to safely travel with your wheelchair. They also offer a downloadable travel tag for your chair. The United Spinal Association Care Support Work Group has provided resources for creating a care support plan while traveling.
Related: Five Pro Tips for Flying with a Power Wheelchair, New Mobility
Free at-home COVID-19 Tests:
The U.S. Department of Health and Human Services Administration for Strategic Preparedness and Response and the United States Postal Service has begun a new program offering free COVID-19 tests. Each order will include four tests that will detect the current COVID-19 variants.
One of the available test options is the Orasure InteliSwab test, which is more accessible for people with low manual dexterity. For more information on the features that make the InteliSwab test more accessible and how to order, please visit, ACL.gov/AccessibleTests. Order standard tests here.
From United Spinal Association:
Take Action: Ensure Access to Medicaid. Secure funding for SCI Model Systems.
Advocacy 101: Interested in expanding your advocacy knowledge? Head over to United Spinal Association’s website to take their first module: Why Advocacy? You’ll learn a history of disability related advocacy, important definitions, and ways to be a more successful advocate. Click here to take the course. It will take 45 minutes or less to complete.
Emergency Preparedness: What Can Wheelchair Users Do in An Emergency Evacuation?
Health Equity: United Spinal has compiled a list of resources to help you receive the healthcare you deserve!
From the Christopher and Dana Reeve Foundation:
Self-Advocacy Series: This is a seven-part video series on disability rights and self-advocacy. Explore disability history and learn about Section 504 and the Americans with Disabilities Act (ADA), and pick up tips on navigating healthcare, employment, housing, transportation, and education. Watch the series here.
Advocate with the Reeve Foundation! Sign up here!
How to Navigate Insurance after Life-Changing Injury & Illness:
Spaulding hosts a yearly webinar to provide information and education. This year’s webinar covered the insurance maze. Learn the difference between commercial, Federal (i.e. Medicare), State (i.e. Medicaid), and long-term plans, as well as tips and tricks to get the most out of your insurance purchase. This webinar information is not specific to Massachusetts. Watch the recording, as well as last year’s recording on community organizations, here
Boston:
Did you know? Boston has a number of restrooms open to the public. Sometimes they can be difficult to find. Click here for a map of all of the public restrooms available in the city.
The Boston Disability Commission offers a number of programs, including how to apply for an accessible parking spot, requests for a curb ramp installation or repair, and additional information on housing, transportation and employment. Check out their Youtube for webinars on a variety of topics. The most recent was on finding affordable, accessible housing in Boston.