January 2025 Advocacy Update
Medicaid:
Congressional offices are preparing to file reconciliation bills. The use of reconciliation allows lawmakers to avoid the filibuster in the Senate and requires a 51 vote majority (rather than a 60 vote majority), which streamlines the passage of controversial legislation that may otherwise be blocked or delayed. Reconciliation can only be used for legislation related to taxes and spending, often shifting funding from one program or priority to another through this expedited process. Right now, some congressional offices are proposing changes that would shift funding away from Medicaid to other priorities through the use of reconciliation. Some of the potential changes to Medicaid include: lower funding match rates, block grants, per-capita caps, and work requirements.
Block grants and per-capita caps are inflexible funding sources leaving states responsible for any additional Medicaid costs. Work requirements would increase administrative costs and likely would not increase employment rates. Additionally, reduced spending on Medicaid could trigger laws in nine states to end their Medicaid expansion initiatives, and cause additional states to end their Medicaid expansion due to the program being financially unsustainable. Any of these changes to Medicaid would shift costs from the federal government to state governments, and result in millions losing access to health insurance.
It’s also important to note that state Medicaid programs are required to provide some health care services and nursing home services, but are not required to provide home and community based services such as the MassHealth PCA program (see the full list of mandatory and optional services here). Changes to Medicaid funding could result in states cutting optional Medicaid services in order to keep the mandatory services afloat without bankrupting state budgets.
Medicaid provides critical support to people with disabilities and their families and any cuts to the program would result in negative consequences for the disability community. Disability organizations are preparing to resist any attempts to reduce funding to Medicaid and we will need your help to do it.
Please email vita@sciboston.org to share how access to Medicaid (also known as MassHealth in Massachusetts) has impacted your life! Your stories are one of your most important advocacy tools in affecting policy.
Related:
Millions Could Lose Health Insurance to Pay for Trump Tax Cuts, Association of Health Care Journalists
Americans Want a Better Economy—Investing in Care Holds the Key, Generations Op-ed
Input Opportunities:
Help improve access to taxis and rideshares for mobility device users!
BraunAbility is working to understand how the access to and quality of taxi and rideshare experiences can be improved for wheelchair users. They are seeking focus group participants who reside in the Greater Boston area and use (or try to use) taxis and rideshares such as Lyft and Uber for transportation. Interviews will take about an hour, and participants will be compensated for their time. Caregivers of individuals that use wheelchairs may participate in the focus groups as well. If interested, please contact Vita Brown at vita@sciboston.org for more information or to be connected with BraunAbility.
Related: Disabled Americans Rely on Rideshare Apps but Say They Still Face Discrimination, Associated Press
Subminimum Wages for Disabled Employees:
The Fair Labor Standards Act allows employers to apply for certificates to “pay productivity-based subminimum wages to workers with disabilities”. Due to increased employment opportunities for people with disabilities, The Department of Labor proposes to phase out these subminimum wage certificates, and seeks input on this proposal. Please submit written comments by January 17th, 2025.
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.
Bowel Management Devices:
Transanal irrigation (TAI) devices help to manage neurogenic bowel dysfunction. Currently, they are not eligible for Medicare coverage, despite being a minimally invasive technique that offers significant relief from chronic constipation and incontinence in eligible individuals. In order for Centers for Medicare and Medicaid (CMS) to cover TAI under Medicare, they must recognize TAI as prosthetic devices. Ask your members of Congress to encourage CMS to recognize TAI as prosthetic devices here.
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.
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.
Job Opportunity with DPC:
The Disability Policy Consortium is looking for a community organizer to lead the fight for wheelchair repair and improve access to durable medical equipment. Individuals who use wheelchairs or other mobility devices are strongly encouraged to apply. Read the full job description here.
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.
The MBTA has launched a new mobile app called “MBTA Go” that provides accurate real-time updates for all fixed route services and estimated arrival times for a rider’s trip. The app is currently only available for iOS users, and is fully accessible by Voice Control and Voice Access.
Related: MBTA Partners with Spare to Improve Its Paratransit Services, MassTransit
State: In the final hours of 2024, the Massachusetts House and Senate sent a number of bills to Governor Healey to be signed into law, including a bill that would allow the MBTA and other regional transit authorities to use bus-mounted cameras to fine anyone using bus lanes and stops improperly. For example, vehicles parked in bus stops could be fined $100. The passage of this bill will make it significantly safer for people with disabilities to ride public transit by reducing the need for riders to board and exit buses from the street.
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 will go into effect January 16th, 2025. 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 also has a resource page on how to make your transportation complaint count. This page includes instructions on how to file a complaint for all types of transportation, including air travel, buses, light rail, paratransit, and taxis.
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
In the Media:
Hospital at Home: When a Home Turns into the Hospital, Boston Globe
Health Access: A $180K Grant for a Group of South Berkshire Towns Aims to Prevent Ambulance Deserts, Berkshire Eagle
ADA Advocacy: Taking Action Against a Hospital, New Mobility
Healthcare Workforce: Immigration as a Solution to Healthcare Workforce Shortages, Niskanen Center and To Ease a Doctor Shortage, Mass. Looks Outside the U.S., WBUR
Census: Convening on Disability Measurement: A Powerful Next Step in an Ongoing Discussion
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 PCA’s 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.
Events*:
*(all events are free unless otherwise noted)
From Standards to Support: Understanding the Access Board’s Role in Accessibility:
Thursday, January 9th, 2025 from 2:30 - 4:00 pm, on Zoom.
Please register here.
The Great Lakes ADA Center is hosting a webinar to explore the U.S. Access Board’s role in creating, training, and enforcing accessibility standards, and which responsibilities fall outside of the Access Board’s scope. Video Remote interpreting and Live Captioning will be offered, as well as continuing education credits.
U.S. Access Board Presents Preliminary Findings on AI:
Tuesday, January 14th, 2025 from 2:00-3:30pm, on Zoom
Join the virtual meeting here.
Meeting ID: 160 173 1944
Passcode: 524293
The U.S. Access Board will present their preliminary findings on the risks and benefits of Artificial Intelligence (AI) on the disability community as part of the Developing Artificial Intelligence (AI) Equity, Access and Inclusion for All Series. The findings are based on the AI hearings held this summer, independent research, and comments received by the public. You can find more information and recordings of the previous sessions here
Virtual Coffee Session with Christopher Reeve’s Regional Champions:
Wednesday, January 15th, 2025 from 3:00 - 4:00 pm, on Zoom.
Meeting link here.
This Virtual Coffee Session is an opportunity to connect with other advocates for the Christopher and Dana Reeve Foundation.
Employment and Benefits Webinar Series:
Join the Disability Law Center for an Employment and Benefits webinar series. The first session on Employment will cover workplace protections, reasonable accommodations and the interactive process, and when to disclose your disability. The second session on Benefits will cover the Social Security Administration programs available to people with disabilities and the rules for working when you receive SSI and/or SSDI. Both sessions will include a live Q&A. You may attend one or both sessions. ASL and CART will be provided.
Employment Webinar: Thursday, January 16th, 2025 from 1:00 - 2:30 pm, on Zoom.
Benefits Webinar: Thursday, January 23rd, 2025, from 1:00 - 2:30 pm, on Zoom.
Please register for both sessions here.
The Link Center’s Virtual Shared Learning Groups: Navigating the Justice System:
The Link Center’s Shared Learning Groups are an opportunity to have important conversations around how to better support people with disabilities. These sessions will focus on navigating the justice system, including advice on helping people successfully reintegrate into society through community resources and support networks. Live captioning and ASL interpretation will be provided. There are four sessions on the same topic for different target audiences. Please register for the session most relevant to you or whichever best fits into your schedule.
Wednesday, January 22nd, 2025
Families of people with lived experience
1:00 - 2:30 pm
People with lived experience
3:00 - 4:30 pm
Tuesday, January 21st
Direct Support Professionals
1:00 - 2:30 pm
Clinical Professionals
3:00 - 4:30 pm
United Spinal Association’s Advocacy LIVE:
Tuesday, January 21st, 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.
January RTAG General Meeting:
Thursday, January 23rd, 2025 from 5:30-7:30 pm, on Zoom
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.
After Hospital Neurological Rehabilitation: Meeting the Need
Friday, January 24th, 2025 from 1:00 - 3:00 pm, on Zoom.
Please register here.
Join NORCAL SCI for a virtual symposium on SCI rehabilitation. The symposium will include a discussion of shortened rehabilitation stays, the outpatient rehabilitation crisis, and its impact on individuals with SCIs. Also discussed will be strategies to expand access to care and how to facilitate collaboration between organizations.
Massachusetts Office on Disability: Community Access Monitor (CAM) Training:
Wednesday, March 12th and Thursday, March 13th, 10:00 am - 3 pm, on Zoom
Register here.
Spaces are going fast! The Massachusetts Office on Disability (MOD) will be holding a 2-day Community Access Monitor (CAM) training via zoom. You will learn about: the history of disability laws, regulations, and rights, the Americans with Disabilities Act standards and accessible architecture regulations, effective communication, how to advocate for access, and the rights and responsibilities of a CAM.
Registering at the above link will register you for both days. Attendance will result in a Certificate of Course Completion and the opportunity to participate in the Advanced Community Access Monitor (ACAM) training courses.
Can’t make this training? Additional training dates can be found on the CAM Training Webpage.
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, please visit, ACL.gov/AccessibleTests. Order accessible tests here. Order standard tests here.
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).
From United Spinal Association:
Take Action: Reform wheelchair service and repair. Create a pilot program that would help the length of rehabilitation stays. Ask CMS to change the “in the home” language
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!
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.
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.