January 2024 Advocacy Update
End of Year Advocacy Roundup:
The end of the year is a perfect time to reflect on our successes and to prepare for all of the advocating we’ll do in the new year! One of the biggest wins of this year has been the public attention on wheelchair repair. There have been numerous news articles and T.V. news segments that have bolstered awareness of this critical issue. Let’s continue this energy and motivation, by emailing your legislators about the Wheelchair Warranty and Repair Bill.
The MBTA held their semiannual update on the Daniels-Finegold settlement this month. This public meeting is held as part of an agreement to provide additional accessibility requirements on the MBTA. According to the Honorable Judge Patrick King, who presided over this meeting, there have been a number of improvements, including: an increase in responsiveness to complaints filed, the percentage of time that all four wheelchair restraints were used, and there is now sufficient personnel available to provide assistance at each station during operating hours. They will continue to improve elevator up-time (the amount of time an elevator is working), put in effort to resolve the issue of platform gaps, and improve access to real time information on vehicles, such as elevator outages or service diversions. Attend the next settlement update on June 26th, 2024 5:30-7:30 pm.
Questions, comments and complaints about the MBTA:
MBTA.com
Click on support
Fill out a feedback form
Tweet @ MBTA
Call (617) 222 - 3200
The Rider’s Transportation Access Group (RTAG) held their monthly meeting on Dec 14 – this one was about snow removal at bus stops and subway/train stations. The MBTA meets with municipalities’ Department of Public Works (DPW) annually. It is each municipality’s responsibility to remove snow and ice, unless the stop is along one of the 15 key bus routes*. In the past, a lack of coordination between municipalities and the MBTA has led to improperly cleared stops. Thankfully, a new position has been created at the MBTA to improve this communication.
To report a stop that needs to be cleared, including the sidewalk/curb cut access to that stop, please contact your city/town’s DPW or Commission on Disability. If you’re in Boston, please contact 311. If there are stops that are chronically inaccessible due to snow, please reach out to RTAG at rtagboston@bostoncil.org or by phone at (978) 893-8100 to share your story. They are collecting narratives and data to better understand the extent of the issue and address potential challenges.
Finally, please take a moment to write to your legislators on the action alerts listed below. Change cannot happen without your voice.
Sincerely,
Vita
vita@sciboston.org
(617) 446-3909
* Key Bus Routes: 1,15, 22, 23, 28, 32, 39, 57, 66, 71, 73, 77, 111, 1Yes16, and 117, plus the Silver Line.
Action Alerts:
We still need your voice on a number of issues with Massachusetts legislation being reviewed including: wheelchair repair, disabled parents’ rights, parentage rights, paid spousal caregiving, Masshealth estate recovery, protecting people with disabilities in healthcare settings, and increasing the number of affordable homes for people with disabilities.
Support Wheelchair Warranty and Repair:
As most of you already know, one of the most important bills currently being reviewed is the wheelchair repair bill. H.378/S.152: An Act expanding wheelchair warranty protections for consumers with disabilities, passed favorably out of the Consumer Protection and Professional Licensure committee. It’s now on its way to be reviewed by Senate Ways and Means. Please continue to express your support for H.378/S.152 by contacting your representatives. You can find an email template here. If you’d like to read more, the Disability Law Center has an extensive write-up here.
Support Changes to Masshealth’s Estate Recovery Policy:
Currently, Massachusetts law requires MassHealth to seek repayment for the cost of all medical services provided after an enrollee turns 55. In many cases, the repayment funds come from the sale of a family home – also known as Estate Recovery. This bill would limit recovery to only what is federally mandated. Click here to express your support by sending an email to your legislator.
Support the SSI Savings Penalty Elimination Act:
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. Click here to express your support by sending an email to your representative.
Support 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. Please write to your Congressional representatives. You can find your representative here.
Write Testimony:
The following bills are still accepting written testimony; please express your support:
Written testimony may be submitted to the Joint committee on Children, Families, and Persons with Disabilities by email at JointCommittee.Children&Families@malegislature.gov
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.
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.
H.1168/S.726: An Act protecting the homes of seniors and disabled people on MassHealth:
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.
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:
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 written testimony FAQ/outline here. If you have any questions, please email vita@sciboston.org.
If you’re looking for a synopsis of these bills, more information can be found over at the Disability Policy Consortium.
Upcoming Events:
U.S. Access Board Webinar: Sporting: The Spectator’s Experience:
Thursday, January 4 from 2:30 – 4:00 p.m. (ET, online)
Register here.
The U.S. Access Board provides a monthly webinar, called AccessibilityOnline, providing education and information a variety of topics. January's topic is all about accessibility at sporting events. The Americans with Disabilities Act (ADA) and Architectural Barriers Act (ABA) Standards contain specific accessibility requirements to ensure inclusion for all spectators. All webinars include video remote interpreting (VRI) and real-time captioning.
United Spinal's Care Support Webinar:
Tuesday, January 30th, 2024 4:00-5:15 p.m. (ET, online)
Register here.
This webinar will be about finding, hiring, training and maintaining caregivers. You will hear from advocates on how to navigate the caregiving crisis and how they manage their own care, as well as, from caregivers on what they need to care for their clients.
Get involved! Advocacy Organizations’ Upcoming Meetings:
United Spinal Association’s Advocacy LIVE:
Tuesday January 16th, 2024 from 5:00 - 6:00 pm, on Zoom.
Please register here.
Interested in grassroots advocacy? The United Spinal Association holds a monthly meeting for advocates to collaborate on national issues. Top priorities include air travel, SSI asset limits, emergency preparedness, care support, and housing.
Would you like to be a Registered Advocate at United Spinal?
Take the Administration for Community Living Survey:
Make SCI/D a strong voice in the U.S. Administration for Community Living’s 2023 National Survey on Health and Disability by reporting on your experiences and concerns! This administration’s goal is to “maximize the independence, well-being, and health of older adults, people with disabilities across the lifespan, and their families and caregivers.”