March 2025 Advocacy Update

Protect Medicaid!

The U.S. House of Representatives voted in favor of the budget resolution that directs the House Energy and Commerce Committee (which has jurisdiction over Medicaid) to cut a minimum of $880 billion in federal spending. The budget resolution doesn’t expressly state the cuts must come from Medicaid, however, it is incredibly likely that they will. This cannot and should not happen. A large portion of our community relies on Medicaid services and programs, such as MassHealth Standard, MassHealth CommonHealth, Program of All-Inclusive Care for the Elderly (PACE), PCA services, etc. Additionally, most of the home and community based services that provide supports to people with spinal cord injuries are non-mandatory Medicaid services. (As a refresher, states are required to offer certain services, such as doctors visits and hospital stays, and can add additional services, such as the PCA program. The additional services are called non-mandatory Medicaid services.) If there are cuts, the non-mandatory services are likely the first on the chopping block, as States will be required to prioritize funds for mandatory services.

The passage of this budget resolution is serious, but it isn’t game over yet. There are multiple steps in the budget process still to go, and we have a chance to stop the cuts at each of them. Up next, the U.S. Senate and House must agree to identical budget resolutions. So, what can you do? First, head on over to the January Advocacy Newsletter for a refresher on budget reconciliation and some of the most likely cuts to Medicaid coming down the pipeline. Then, continue encouraging your legislators (especially your U.S. Senators) to oppose cuts to Medicaid by calling, writing and showing up; the United Spinal Association has an easy auto-fill email option that you can use here. Next, share your story and the impact that Medicaid has had on you. There’s a couple of ways you can do this besides calling your legislators. For example, there are a number of organizations collecting Medicaid stories to share as part of larger advocacy efforts, such as the United Spinal Association (found here) and the Disability Policy Consortium (found here). Everything is moving quickly, so follow us on Instagram and Facebook to hear about last minute changes and ways to get involved.

If you’re not on social media, check out our most recent advocacy post below:

Image Description: This is a slideshow discussing Medicaid (aka MassHealth) and the potential cuts.

More resources:

1. Check out the Massachusetts Developmental Disabilities Council’s page on Medicaid Resources to view a video recording of their Medicaid Matters Information Session

2. Check out the Autistic Self-Advocacy Network for a easy read or plain language toolkit on Medicaid

3. Check out this in-depth explanation by Sara Rosenbaum and Alison Barkoff (Former Acting Administrator and Assistant Secretary for Aging at the ACL)

Relatedly, legislation has been introduced in both the House and Senate to establish work requirements for certain Medicaid recipients. H.R. 1059 and the companion bill, S. 447, would “require able-bodied adults without dependents who receive Medicaid benefits to work or volunteer for at least 20 hours per week.” There is evidence that Medicaid work requirements don’t work, and are detrimental to people with disabilities and their caregivers. Read more or watch this short video. 

Rally for PCA Services!

The Boston Center for Independent Living and the PCA Union, 1199SEIU, are hosting a rally on March 12th at 1pm at the Massachusetts Statehouse! Join them in speaking out against any budget cuts or restrictions to the MassHealth PCA program! 

Related: Healey Seeks Controls as Home Care Costs Soar for Personal Care Assistants, WGBH

Protect Section 504!

Texas v. Becerra is a federal court case filed in Texas. A group of 17 states have sued the U.S. government and are asking the court to get rid of the new Section 504 rules from last year, and to restrict Section 504 to only apply to programs expressly mentioned in the Rehabilitation Act. If successful, this would result in Section 504 no longer applying to health care, education, or housing. As a reminder, Section 504 is the United State’s foundational disability rights law that says you can’t discriminate against disabled people if you receive federal funding. Additionally, the case alleges that the “integration regulation”, which protects the right of people with disabilities to participate in the community with supports instead of being segregated in institutions, is unconstitutional. To change anti-discrimination policy in this way would be a massive step backwards in the fight for equality and inclusion for people with disabilities. For more information, check out the Disability Rights Education and Defense Fund (DREDF). 

Actions to Protect Section 504!:

DREDF has instructions on how to get involved! 
New Mobility is collecting stories to highlight how important Section 504 is to maintaining access to educational opportunity, accessible healthcare, and community inclusion. Email tsherer@unitedspinal.org, to share your story! 

Related: Section 504 is Under Attack, New Mobility

United Spinal’s Virtual Advocacy Day!

Join the United Spinal Association for their 2025 Virtual Advocacy Day on Wednesday, March 26th! This year they are partnering with the traumatic brain injury and burn communities to advocate for Model Systems funding, and additional policy priorities. This is a fantastic opportunity to meet virtually with your Congressional offices! There will be an education session the day before, and a debrief the day after. Please register here. 

Education Session: Tuesday, March 25th, 2:00-3:30 PM

Congressional Meetings: Wednesday, March 26th, between 9:00 AM and 5:00 PM

Debrief: Thursday, March 27th, 12:30-1:30 PM

Transportation:

Local: MBTA GO, the MBTA’s real-time travel app is now available for Android!

Need to report an un-shoveled 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.

State: Representative Christine Barber, in collaboration with RTAG, the Disability Law Center, and BCIL, has sponsored a bill protecting transportation network riders from discrimination. This legislation, currently HD 632, would amend state law to impose fines on transportation network drivers who refuse services to riders accompanied by service dogs. Transportation networks include rideshare services like Uber and Lyft. 

Curious about snow removal requirements in Massachusetts and the impact on accessibility? Check out this guide!

National: Airlines are now seeking to overturn the new final rule that increases protections for airline passengers with disabilities. The new U.S. Department of Transportation (US DOT) final rule became law on January 16th, 2025.

Related: United Airlines Failure Traps Wheelchair Rugby Team in Air Travel Hell, New Mobility and Boston Volt Hockey Players Removed from Flight in Denmark Because of Wheelchairs, CBS

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. Additionally, 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: 

Self Care: I’m Stressed About Current Events. How Can I Practice Self-care During Uncertain Times?, NAMI

Medicaid: Dr. Mehmet Oz Holds Millions from Companies that He’d Wield Power Over if Confirmed, Report Shows, Associated Press

HHS: Trump Officials Defend HHS Cuts as More Methodical Than the Slashing at Other Agencies, Politico

Housing: DOGE Gains Access to Confidential Records on Housing Discrimination, Medical Details – Even Domestic Violence, ProPublica

Parking: Meet the Wheelchair User Solving Accessible Parking Abuse, New Mobility

Direct Care Workforce: Immigration Crackdown Has Caregiving Industry On High Alert 

Access: Advocates Push Massachusetts to Require Hybrid Public Meetings WGBH

Veterans: VA Fires 1,400 More Staffers in Second Round of Workforce Reductions, Military Times

Input Opportunities:

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: 

1. Responsive Practice: Providing Health Care and Screening to Individuals with Disabilities

2. Responsive Practice: Accessible and Adaptive Communication.

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 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. 

Take the survey.

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)

Webinar Series: The Human Experience of Black People with Disabilities and Their Rights Under the ADA

Join the Mid-Atlantic ADA center for a four-part webinar series on the experiences of Black individuals with disabilities. This series will share findings from a study that explored the intersection of race, disability, and rights under the ADA. Additional topics will include multiple marginalization, strategies for overcoming barriers, and the power of community advocacy. 

Please register here.

Part 1: The Intersection of Race, Disability, and the ADA
March 4th, 12:00pm - 1:00 pm

Part 2: Intersectionality – Unpacking Discrimination, Stigma, and Multiple Marginalization
June 3rd, 12:00pm - 1:00 pm

Part 3: Fighting for Civil and Disability Rights: Strategies to Overcome Barriers
September 2nd, 12:00pm - 1:00 pm

Part 4: The Power of Visibility and Community Advocacy
December 2nd, 12:00pm - 1:00 pm


Virtual National Council on Disability Meeting:

Thursday, March 6th, from 10:00 am - 3:10 pm and Friday March 7th, 10:00 am - 12:00 pm

Please register here.

This meeting will include Council reports and policy updates, a panel discussion on recent experiences of people with disabilities during disasters, and a public comment period on younger people in nursing homes. CART and ASL will be provided. 

Family Caregiver Policy: What’s Next for Massachusetts:

Thursday, March 6th, from 12:00 - 1:00 pm

Please register here.

Join the Massachusetts Caregiver Coalition for a webinar discussing the new legislation impacting family caregivers in Massachusetts. There will be a presentation and panel with time for audience Q&A. This is a great opportunity to connect with leading policy makers focusing on caregiver policies in the Commonwealth. 

Boston Public Library: A Conversation about Accessibility

Thursday, March 6th, 2025 from 12:30 - 1:30 pm, on Zoom.

Please register here.

The Boston Public Library is hosting a community forum to learn how to improve accessibility at the BPL. All members of the disability community are welcome, including individuals with disabilities, caregivers of people with disabilities, and agencies. Please visit their site for more information, including requesting accommodations.

U.S. Access Board Webinar: Accessible Means of Egress

Thursday, March 6th, from 2:30 - 4:00 pm, ET

Please register here.

Join the U.S. Access Board for a presentation on the requirements of accessible means of egress, or the accessible ways to enter or leave buildings. Presenters will cover the requirements for emergency evacuation and emergency planning, alarms, routes, and signage. Video remote interpreting and real-time captioning will be included. 

Public Forum on One Care and Senior Care Options:

Tuesday, March 18th, from 2:00 pm

Please register here.

Join Disability Advocates Advancing our Healthcare Rights (DAAHR), the Disability Policy Consortium, and Boston Center for Independent Living for a chance to share your opinions on the new One Care and Senior Care Options (SCO) guidelines. These guidelines begin January 1st, 2026, and include big changes. This is an opportunity to let MassHealth and the other One Care and SCO health plans know what works for you! 

United Spinal Association’s Advocacy LIVE:

Tuesday, March 18th, 2025 from 5:00-6:00 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.

From United Spinal Association:

Policy Watch: Updates on the Unfolding Federal Funding Paus

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:

*New* Grassroots Advocacy Toolkit: This brand new toolkit from the Reeve Foundation will empower you with actionable information to create meaningful change for people whose lives are affected by disabilities.

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. 

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. 

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.