March 2024 Advocacy Update
Hi all! It was a big month for such a short one; a lot happened in February and there is even more to come in March. I’ll keep this brief as there is a ton of information to read below. As always, thank you for continually advocating for yourselves and our community. None of this is possible without you.
Once again I ask that you take a few minutes to fill out the Advocacy Survey, so I can learn what issues matter most to you. Don’t worry, your responses will stay anonymous unless you give me your contact information. Thank you to all who have already filled out this survey. Your input has been invaluable.
Caregivers/PCAs:
The Governor’s proposed 2025 fiscal year budget would keep spending flat for the MassHealth PCA program. This would be accomplished by reducing the maximum number of hours of meal preparation assistance from 13 to seven per week, and disqualifying individuals that receive fewer than ten hours of daily living activities assistance. Additionally, hours needed for instrumental activities of daily living (IADLs) are not included in the minimum of ten hours of activities of daily living (ADLs). In other words, someone who needs assistance for nine hours of IADLs and nine hours of ADLs would be ineligible for the MassHealth PCA program, despite currently receiving 18 hours of services. It is estimated that 6,000 disabled individuals would lose services and 4,000 PCAs would lose their jobs. Various disability and advocacy organizations have spoken out against shrinking the MassHealth PCA program including: Boston Center for Independent Living (BCIL), The Disability Policy Consortium (DPC), the Arc, and 1199 SEIU. BCIL and 1199 SEIU will be holding a rally at the State House on March 20th at 1:00 pm. Scroll to the events section of this newsletter for more information.
MassHealth’s Estate Recovery Policy:
Blue Cross Blue Shield of Massachusetts published an analysis of Estate Recovery in the beginning of February. Under federal law, states are required to be reimbursed from individual’s estates upon their death for long term services and supports (LTSS) provided through Medicaid after the age of 55. LTSS refers to services such as nursing facility stays, home health services, personal care aide, or adult day health care. In Massachusetts, estate recovery is expanded. Those impacted by estate recovery include individuals receiving any MassHealth/Medicaid-covered services – not only those receiving LTSS. According to the Executive summary by BCBS MA, MassHealth is required by state law to recover the total cost of care paid to members aged 55 and older. As a result, “estate recovery often requires the sale of the deceased member’s home to pay off their Medicaid-related debt”. The brief identifies ways to reform MassHealth’s estate recovery program, including: only seeking reimbursement for LTSS services, establishing additional hardship criteria, waiving the first $25,000, offering more information and education on estate recovery, and publishing an annual report. Read the Issue Brief or Executive Summary here.
There is a bill currently being reviewed by the legislature that would limit recovery to only what is federally mandated – estate recovery for LTSS only. If you’d like to send an email to your legislator, the Disability Policy Consortium has an auto-send email in favor of the bill here. If you’d like to know more about how this estate recovery affects you, read the MassHealth fact sheet here.
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.
Transportation:
Local: One of our own spoke up on an important issue this month: Snow-free MBTA stops, stations, and surrounding sidewalks. This winter RTAG has been working closely with the MBTA to improve coordination between municipalities and the MBTA on clearing snow. According to a WGBH article, it can be incredibly complex to determine who’s responsible for clearing snow from each stop – the MBTA, municipalities, private property owners, or the MassDOT State Highway Division. As a result people with disabilities suffer from improperly cleared stops and stations, risking their health and well being. To read the full WGBH article click here.
Please continue to share your snow-related transportation problems with RTAG! Contact Kat Torres, RTAG Facilitator, at ktorresradisic@bostoncil.org.
On January 30, SCIboston advocates listened in on the City of Boston’s presentation of their Curb Ramp Implementation Plan, adopted pursuant to a Consent Decree to upgrade all existing curb ramps and install missing curb ramps at every intersection. Officials came across as determined, knowledgeable, and very open to feedback. It was great to hear that the City plans to use cast iron sensory pads on ramps from now on, having found that plastic pads tend to crack and become unsafe for wheeled passage. Anyone who encounters a missing or substandard curb ramp in Boston is encouraged to report it using the City’s 311 app, or on the City’s website (there's also a button on the homepage!
Last year, RTAG, BCIL, and the Bay State Council of the Blind (BSCB) “hosted a public forum on rideshare refusals of service animal users”. Through this forum, nearly 100 people requested that “Uber and Lyft enforce strict measures to prevent driver denials of service to individuals with service animals”. These requests have been echoed across the country. As a result, Lyft is establishing a working group to address service animal refusals, and Uber has created an educational video to improve training on transporting individuals with service animals.
Federal: One of the main focuses of the National Commission on Disability’s quarterly meeting was accessible transportation. We heard from a number of stakeholders including Juliet Shoultz, from the U.S. Access Board, Kelly Buckland, from the Department of Transportation, Matthew Faiella, from the Department of Justice, and disability community advocates. A number of topics were discussed, including the Department of Transportation’s disability policy priorities, public right of way accessibility guidelines, and ground and airline travel.
Airlines: The next year will be spent determining the best wheelchair securement system, and the Federal Aviation Administration (FAA) will be evaluating a folding seat plan submitted by Delta. There has been additional attention to making electric vehicles and their charging stations more accessible.
Trains: Amtrak continues to make more of their stations fully wheelchair accessible and are designing new accessible trains that would allow passengers who use wheelchairs to access the entire train.
Paratransit: The Department of Transportation will propose that paratransit will be a same-day service, rather than requiring passengers to book a ride 24 hours in advance.
Finally, the Department of Justice strongly encourages anyone facing transportation discrimination report it to the DOJ. If you have ever experienced discrimination, file a complaint 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.
Upcoming Events:
Webinar: U.S. Access Board: Employee Work Areas and Break Rooms:
Thursday March 7th, 2024 at 2:30 pm, on Zoom
Register here.
All common use areas must be fully accessible, even those that only serve employees. There is a difference between employee only areas and employee work areas. Attend this webinar to learn the difference and where exceptions apply! You will also learn about Architectural Barriers Act and Americans with Disabilities Act requirements for the common areas most often found in employee only spaces, such as break rooms.
All webinars include video remote interpreting (VRI) and real-time captioning. You can earn continuing education credits for attending.
Join the United Spinal Association for their Virtual Advocacy Day!
Virtual Training: Tuesday March 12th, 2024, 3:00-4:30 pm
Virtual Advocacy Day: Wednesday March 13th, 2024, 9:00am-5:00 pm
Virtual Recap: Thursday March 14th, 2024, 12:30-1:30 pm
Step 1: Become a registered advocate for United Spinal Association
Step 2: Register to be a part of this virtual event! Registration is first-come-first-served and spots are limited!
Step 3: Join in meeting with your Congressional offices to advocate for some of United Spinal’s policy priorities! Top of the list: increasing funding for Spinal Cord Injury Model Systems (SCIMS) and asking for language to direct the Centers for Medicare & Medicaid Services (CMS) to lift the in-home ruling on wheelchairs.
There are currently 18 SCIMS centers, and Spaulding is one of them. This program began in 1970 to address the needs of people with spinal cord injuries by improving rehabilitation care through a multidisciplinary approach. The “centers also conduct research, provide education, and disseminate information”, and provide data to the National SCIMS Database. Read more about it here.
Currently, Medicare and Medicaid will cover mobility devices that are necessary to use in one’s home, however, not all states will cover mobility devices that are solely necessary outside of the home. Not everyone that needs a mobility device needs to use it in their home, some only need mobility devices to engage in their community. Read more here.
MOD’s CAP Webinars: Disability in Employment:
Part 1: Tuesday, March 12, 12:00 - 1:00 pm, register here
Part 2: Wednesday, March 13th, 12:00 - 1:30 pm, register here
Part 3: Thursday, March 14th, 12:00 -1:30 pm, register here
The Massachusetts Office on Disability is offering a free, interactive, three-part webinar on employment with a disability. The first part revolves around when to decide to disclose your disability to an employer. The second part teaches how to ask for reasonable accommodations. The third part talks about disability discrimination; how to recognize and address discrimination. Please sign up for each part separately and contact MOD General Counsel Julia O’Leary at julia.e.oleary@mass.gov or 857-214-1081 to request reasonable modification to participate.
United Spinal Association’s Advocacy LIVE and Research Study:
Tuesday March 19th, 2024 from 5:00 - 6:00 pm, on Zoom.
Please register here to attend. Please email AVohlers@unitedspinal.org to participate in the study.
This month’s Advocacy Live will include a special presentation by United Spinal’s Capstone Student, Annie Vohlers. Her capstone project “focuses on inaccessible travel and transportation for wheelchair users and the psychological impact it has on individuals.” She will be developing a resource that includes common barriers, ways to improve travel, and other information. She is looking for volunteers to participate in a research study. The study would include a pre-test and a post-test, in addition to attending this presentation.If you are interested in participating in this presentation and would be willing to complete the pre and post-test, please email her at AVohlers@unitedspinal.org by Friday, March 8.
Pre-surveys will be administered on Tuesday, March 12, and they must be completed no later than 10pm EST on Monday, March 18.
Post-surveys will be administered directly after the presentation and must be completed by 6pm EST on Wednesday, March 20.
PCA Rally:
Wednesday March 20th, 2024 at 1:00 pm, at the State House
The Boston Center for Independent Living and 1199 SEIU (the PCA union) will be holding a rally at the State House on March 20th, 2024 at 1:00 p.m. This rally is in opposition to the proposed budget cuts to the MassHealth PCA program. If you are interested in attending and have questions or accessibility requests, please contact Vita Brown, at vita@sciboston.org.
March RTAG General Meeting:
Thursday March 28th, 2024 from 3:00 - 5:00 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.
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.
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
Still accepting written testimony
Written testimony may be submitted to the Joint committee on Children, Families, and Persons with Disabilities by email at JointCommittee.Children&Families@malegislature.gov
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.
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.
Still accepting written testimony
Written testimony may be submitted to the Joint Committee on Health Care Financing via E-mail to House Chair at John.Lawn@mahouse.gov and Senate Chair Cindy.Friedman@masenate.gov, as well as the Committee Director at timothy.oneill@mahouse.gov.
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.
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!
