May 2024 Advocacy Update
Thank you all to everyone who responded to the advocacy survey. Your responses have been incredibly helpful. I’m excited to share some highlights, which can be found below. Stay tuned for new things on the advocacy front, and for other survey opportunities. As always, don’t hesitate to reach out with any questions or feedback!
We’re collecting stories about healthcare access issues!
Have you ever had an appointment rescheduled because your medical facility couldn’t safely transfer you? Have you had to wait because staff weren’t prepared for a wheelchair user? Have you been unable to receive reasonable modifications during a hospital stay? Email Vita Brown at vita@sciboston.org. All responses will be kept confidential, unless you give us permission to reference your story.
PCA/Caregivers:
The House Ways and Means released their version of the 2025 budget on April 10th, and in it, is language that blocks the implementation of the proposed cuts to the MassHealth PCA program. This is a huge step to ensuring the continued independence of people with disabilities within their communities. Click here for a take-action email to send to your representatives by the Disability Policy Consortium. Next, the Senate will release their budget. If you would like to see the MassHealth PCA program fully funded, please write to your senator and Michael Rodrigues, Chair of Senate Ways and Means, at michael.rodrigues@masenate.gov and ask that they follow the House’s lead.
Long-term Care Facilities:
Massachusetts: On April 16th, an agreement was reached in the class action lawsuit, Marsters v. Healey. Massachusetts will commit $1 billion dollars over the next eight years to expand opportunities for people living in long term care facilities to return to their communities. It’s estimated that the majority of Medicaid recipients living in nursing facilities would be eligible to leave. Final approval from the court for this settlement is expected to occur this summer. Read the Globe article here.
Federal: On April 22nd, the Biden administration in conjunction with Centers for Medicare and Medicaid Services, finalized new nursing home standards of care. Under the new standards, most homes must provide an average of 3.48 hours of daily care per resident. They will have two years to implement this change. According to a KFF analysis, only 1 in 5 nursing facilities are currently staffed to meet the fully-implemented standards. It’s important to note that these standards are lower than what was recommended to fully ensure the safety of residents. Read the NPR article here.
Housing:
April was National Fair Housing and Equity Month! The Fair Housing Act (FHA) prohibits housing providers from discriminating against people based on disability, race, color, national origin, gender, gender identity, sexual orientation, ancestry, genetic information, marital status, veteran or active military status, age, familial status (i.e. children), and/or source of income. Learn more about housing rights for people with disabilities here.
To report housing discrimination in Massachusetts make a complaint to any of the following:
The City of Boston Fair Housing and Equity Office by calling them at 617-635-2500 or emailing FairHousing@boston.gov.
The HUD New England Office 1-800-827-5005 or by visiting www.hud.gov.
The Massachusetts Commission Against Discrimination by calling 617-994-6000 or visiting www.mass.gov/mcad
Financial Planning:
An ABLE account is a tax-free savings account owned by a person with a disability. ABLE accounts allow individuals to save money, without it affecting their eligibility for SSI or Medicaid benefits. Without an ABLE account, it is often impossible to accrue assets and still receive federal benefits. Currently, ABLE accounts are available to anyone who’s date of onset of disability is prior to the age of 26. However, there have been recent legislative changes that will expand the age of onset of disability to 46 by January 1st, 2026. Learn more about ABLE accounts here to find out if an able account is right for you.
Emergency Preparedness:
The Federal Emergency Management Agency (FEMA) published an interim final rule (IFR) amending their Individual Assistance program in the hopes to remove barriers to entry and increase eligibility for certain types of assistance. These changes would standardize serious needs assessments, expand the habitability criteria, and streamline temporary housing assistance applications, among others. Comments on the IFR can be submitted online until July 22, 2024. Please contact vita@sciboston.org for more information.
From the ACL-ODIC Listening Session: FEMA IA Reforms Confirmation
Transportation:
Local:
MBTA: This months’ RTAG meeting opened by strongly encouraging all in attendance to support new bus stop legislation which would allow the state to ticket via the mail. Parking in bus stops has been a chronic issue. Fines are rarely enforced and signs are often disregarded, creating annoying and dangerous interactions for drivers and riders. Too often, people who use wheelchairs are forced to enter the street to board a bus, because another vehicle is illegally parked at that bus stop. The new legislation (S.2600) would allow cameras on buses and at bus stops to take pictures of illegally parked vehicles. Those pictures would then be reviewed, and tickets issued by mail to the verified offenders. Read more here.
Additionally, the MBTA’s proposed FY24-29 Capital Investment Plan (CIP) is now available to review and comment on. There are a number of accessibility related initiatives within the plan, including: accessible passenger facilities, new and modernized elevators, and bus and ferry accessibility improvements. Please comment on or before May 16th, 2024 online or by email to cipengagement@mbta.com. There will be two public meetings, one in person (May 2nd), and one virtual (May 7th), where you can provide your input as well.
Electric Vehicle Charging: Last year, the US Access Board developed Design Recommendations for Accessible Electric Vehicle Charging Stations, and not a moment too soon! All levels of government, including MassDOT, are scrambling to install EV charging infrastructure with federal subsidies in order to meet consumer demand and reduce climate-harming emissions. Contact your municipal transportation, planning, or sustainability office to find out what’s in the works in your area. Additionally, MassDOT is seeking feedback on their criteria for revamping its 18 service plazas, this is an opportunity to stress the importance of inclusive features to EV charging. Comments are due by May 24th, 2024 (note: you don’t have to be a potential bidder to weigh in).
Federal:
Air Travel: The U.S. Department of Transportation (DOT) is looking for your input! The deadline for comments is Monday, May 13th. They have proposed a rule to strengthen the Air Carriers Access Act (ACAA) and ensure that wheelchair users can travel safely and with dignity.
The proposed rule would require enhanced training for airline employees and contractors who aid passengers with disabilities and handle passengers’ wheelchairs. It would also specify actions that airlines must take to protect passengers when a wheelchair is damaged during transport. In addition, any damage or delay in the return of a wheelchair to its owner would be an automatic violation of the ACAA.
If a wheelchair is mishandled by an airline, the proposed rule would require either of the following:
The carrier handles the repair or replacement of the wheelchair with one that has equivalent or greater function and safety within a reasonable timeframe and pays the associated cost.
The passenger arranges the repair or replacement of the wheelchair with one that has equivalent or greater function and safety through their preferred vendor and the airline pays the associated costs.
DOT is also requesting input on two topics not currently included in the proposal: lavatory size on twin-aisle aircrafts and reimbursement of the fare difference between flights when forced to choose a more expensive flight with an aircraft that fits their wheelchair.
Comments can be submitted online, by mail or fax, or hand-delivered
Read DOT’s press release for a summary of key provisions.
In the News:
Wheelchair Repair (Opinion): Mass Wheelchair Repair System is a Disgrace
Traveling with a Disability: People with Disabilities are Advocating for More Accessibility, and the Travel Industry is Listening
Private Equity in Healthcare: At Private Equity Owned Hospitals Hospital Acquired Conditions Increased
Teach Disability History: Teaching Disability History in Schools is 'long overdue,' Advocates Say
Watch: Crip Camp: A Disability Revolution
From United Spinal Association:
Take Action: Ask CMS to change the “in the home” language.
Wheelchair Stories: United Spinal is looking for stories on wheelchair repair issues. If you are on Medicare, need your wheelchair replaced or repaired, and have been denied and/or extended delays for coverage for a qualified provider-prescribed wheelchair, please email policy@unitedspinal.org.
Policy Survey: Bring your most important issues to United Spinal—they’re here to help. Let them know how they can focus on what’s important to you by taking this brief policy survey.
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.
Events:
Monthly WalkMassachusetts Meeting on PROWAG:
Wednesday, May 15th, 2024 from 1:00 -2:00 pm, on Zoom.
Please register here.
WalkMassachusetts advocates for all pedestrians statewide, including wheelchair users. May’s topic is a presentation from the US Access Board on newly-published new guidelines under the Americans with Disabilities Act (ADA) and the Architectural Barriers Act (ABA) that address access to sidewalks, streets and shared-use paths; crosswalks, curb ramps, and pedestrian signals; on-street parking, and other components of public right-of-way. Attend to learn the standards that apply in Massachusetts.
United Spinal Association’s Advocacy LIVE:
Tuesday May 21st, 2024 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.
May RTAG General Meeting:
Thursday May 23rd, 2024 from 5:30-7:30 pm, on zoom
Please register here.
Riders’ Transportation Access Group (RTAG) is an organization that 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.
Massachusetts Office on Disability:
Community Access Monitor (CAM) Training:
Thursday, June 6th and Thursday, June 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. This training will provide information on how to improve accessibility within your community through advocacy. 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. After you register, you will receive the link for day 1. You will receive an email with the link for day 2 once all seats have been filled. There is a 60 seat limit, so please register early! 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.
Having difficulty registering online? Please email Jeffrey Dougan, MOD’s Assistant Director for Community Services, at jeff.dougan@mass.gov for assistance.
Save the Date: Virtual Roll on Capitol Hill with United Spinal Association
June 11th (educational day)
June 12th (congressional meetings)
June 13th (debrief session)
Join United Spinal Association for their annual Roll on Capitol Hill. This year, meetings will be held virtually with your members of Congress. Virtual Advocacy Day in March was an incredible opportunity to connect with our legislators and be heard on some of the most important issues affecting our community. Spots will go quickly, so sign up as soon as possible! Stay tuned for more information.
How to File an Architectural Barriers Act Complaint:
The U.S. Access Board just produced videos on how to submit an Architectural Barriers Act (ABA) complaint. This Youtube video provides a step-by-step guide on how to file an ABA complaint after encountering an accessibility barrier at a covered facility. This video includes ASL interpreting, closed captions, and audio description (AD). You can find the video here.
Interested in Improving Transportation on the MBTA?
The MBTA is looking for your participation in surveys and focus groups. Their goal is to have the perspectives of people with disabilities incorporated into decision making. They are looking to expand their network of individuals involved in the decision making. Fill out this form to be contacted about future involvement in providing in depth feedback. Participants may be eligible for a pre-paid CharlieCard or gift card, depending on the activity.
Federal Bills on Our Radar:
The SSI Savings Penalty Elimination Act:
H.R. 5408/S.2767: SSI asset limits have not changed since 1989, leaving many struggling to make ends meet. This bill would raise the asset limit from $2,000 for an individual and $3,000 for a couple, to $10,000 and $20,000 respectively. The asset limit would also annually adjust for inflation. It is currently in the House committee on Ways and Means and the Senate committee on Finance. You can contact your legislators through congress.gov to let them know what you think of this bill. The House and Senate links are here. If you are in favor of this bill, United Spinal has a pre-written email that you can sign your name to and send to your legislator.
The Choices for Increased Mobility Act:
This bill, H.R. 5371, would allow Medicare beneficiaries to obtain access to titanium and carbon fiber wheelchair frames, by allowing them to upgrade their wheelchairs at their own cost. Currently, Medicare beneficiaries are not allowed to upgrade their wheelchairs to a titanium frame, and many commercial plans (which often mirror these coverage policies) have followed suit. Titanium and Carbon fiber frames offer a freedom of mobility and reduction of secondary health concerns that other frames do not, due to being extremely lightweight. This bill has been reported favorably by the federal House Energy and Commerce committee and is being reviewed by the House Ways and Means. Feedback is also being accepted on this bill at congress.gov. Click here.
Massachusetts Bills on our Radar:
S.2546: An Act expanding wheelchair warranty protections for consumers with disabilities:
Passed the Senate and is now onto the House.
Currently being reviewed by the Committee on Health Care Financing.
Reporting date has been extended to Saturday, June 1st 2024.
If you’d like to read more, the Disability Law Center has an extensive write-up here. If you’d like to comment on this legislation, email your Representative!
H.1168/S.726: An Act protecting the homes of seniors and disabled people on MassHealth:
Currently in the Senate Ways and Means
Reported favorably out of committee and referred to the Committee on Health Care Financing
Reporting date extended to Wednesday July 3, 2024.
Still accepting written testimony
Written testimony may be submitted to the Judiciary Committee at 24 Beacon Street, Room 136, Boston, MA 02133 or by e-mail to michael.musto@mahouse.gov.
Reporting date extended to April 30th, 2024.
Still accepting written testimony
Written testimony may be submitted to the Judiciary Committee at 24 Beacon Street, Room 136, Boston, MA 02133 or by e-mail to michael.musto@mahouse.gov.
Reporting date extended to April 30th.
Bill reported favorably by committee and referred to the committee on Senate Ways and Means
H.1305/S.884: An Act to create affordable homes for persons with disabilities:
Still accepting written testimony
To submit written testimony, please email it to Luke O'Roark at luke.oroark@mahouse.gov and Christianna Golden at christianna.golden@masenate.gov.
Reporting date extended to Wednesday July 10th, 2024, pending agreement from the Senate
Bill reported favorably by committee and referred to the committee on Bonding, Capital Expenditures and State Assets.
Committee on Bonding, Capital Expenditures and State Assets recommended the bill should not pass
Bill has been sent to the committee on House Ways and Means
Bill reported favorably out of committee and referred to Senate Ways and Means
You can find a how-to on written testimony here. If you have any questions, please email vita@sciboston.org.
If you’re looking for a synopsis of some of these bills, more information can be found over at the Disability Policy Consortium. Additionally, email vita@sciboston.org with any questions!
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