December 2023 Advocacy Update
Exciting news for the State of Massachusetts, two important bills have been approved by the Senate and House as of Wednesday, November 15th. First, the Senate approved S.2520, “An Act Relative to Pharmaceutical Access, Cost and Transparency” (PACT Act 3.0) – a prescription drug bill that would reduce the cost of, and increase access to pharmaceuticals. This bill would cover the cost of generic prescription drugs for free and limit brand-name copays to $25, for people with diabetes, asthma, and heart conditions. Additionally, it would create a fund to provide “financial assistance for prescription drugs to treat certain chronic conditions that disproportionately impact communities of color and low-income communities”, and ensure that consumers are paying the lowest price possible for prescriptions. Click here to read the bill’s fact sheet.
Second, important long term care legislation passed unanimously in the House of Representatives. “An Act to improve quality and oversight of long-term care” (H.4193), offers the Department of Public Health additional tools to monitor long-term care facilities, strengthens licensure standards, implements new initiatives to grow the caregiving workforce, and much more.
We still need your voice on a number of issues with 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.
Write to your Legislators:
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. If you’d like to read more, the Disability Law Center has an extensive write-up here.
Testify:
Testifying at a hearing or in writing to a legislative committee is an excellent way to let our legislators know which bills are important to us.
The following bills are still accepting written testimony, so please express your support for:
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 guide here. If you have any questions, please email our Advocacy Coordinator, Vita Brown at vita@sciboston.org.
If you’re looking for a synopsis of these bills, more information can be found over at the Disability Policy Consortium.
H.R. 5371: Choices for Increased Mobility Act
Will allow Medicare beneficiaries to obtain access to titanium and carbon fiber wheelchair frames. Congress must act to reinstate beneficiaries’ ability to upgrade to titanium and carbon fiber wheelchairs, at their own cost, if they so wish. Click here to read more about H.R. 5371 from Permobil. We will post updates when we have them.
Get Involved! Upcoming Advocacy Meetings at fellow Organizations:
United Spinal Association’s Advocacy LIVE:
Tuesday December 19, 2023 from 1:00 - 2:00 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.
MBTA Riders’ Transportation Access Group meeting:
Thursday December 14, 2023 from 5:30 - 7:30 pm, on Zoom.
Please register here.
The Riders' Transportation Access Group (RTAG) provides a regular forum for MBTA customers with disabilities to hear from, and give feedback to, the MBTA on transit and paratransit service features and issues impacting them. This is a highly interactive platform!
Walk Massachusetts
Wednesday, December 20, 1:00-2:00 pm.
Please register here.
Are you interested in working with other community-based advocates for pedestrian mobility, to improve facilities, remove barriers, and increase safety? If so, consider participating in monthly meetings to learn and share. This group is quite inclusive of the needs of those who use wheelchairs and other mobility devices, as you can see here.
The Rider’ Transportation Access Group Newsletter is packed with great info for MBTA users with disabilities. Click the orange button to see the whole newsletter that includes:
12/6: Semi-Annual Update on Daniels-Finegold Settlement
MBTA Announces New Green Line Car Exterior Paint Design
12/3: International Day of Persons with Disabilities
Did You Know? Our MBTA buses are more accessible than ever
Preparing for the Winter
12/14: December RTAG General Meeting
From The Disability Policy Consortium
LEGISLATIVE ACCESS AGENDA
DPC’s mission is to bring the perspectives of people with disabilities to the table on key issues, empower our community through healthcare support and advocacy, participatory research, and expert policy analysis, and lead grassroots campaigns that make Massachusetts more accessible and inclusive. Our credo is "About Us, By Us" — the belief that when decisions are made about people with disabilities, people with disabilities should be the ones making them.
Click here to download the Legislative Access Agenda PDF booklet from the DPC.
Your Mental Health Matters – Invitation to Participate in a Mental Health Program for people with a Spinal Cord Injury:
Acceptance and Commitment Therapy (ACT) is an emerging, evidence-based, psychotherapy approach that can improve mental health through mindfulness, acceptance processes and behavior change. Lakeshore Foundation is helping to recruit for a remote, ACT study with the following requirements:
1. Adults who have acquired an SCI within 5 years
2. Participation in 8 weekly videoconference sessions with a coach
3. Completion of questionnaires 3 times
4. Participants must have access to a computer or smart phone with internet access in their home.
5. This study is remote and is open to anyone living in the USA.
The purpose of this project is to understand how well a coach-guided 8-week online acceptance and commitment therapy (ACT) program improves mental health of individuals living with spinal cord injury (SCI) within five years.
Participants who complete the study will be compensated up to $215!
For questions and more information, contact Jessica Hawkins at jshawkins@uabmc.edu or 205-975-2882.
One Care Fact Sheets & Other Materials:
See below for the One Care fact sheets and other helpful materials like a comparison document comparing SCO plans.
Important! If you need an interpreter or translation help with any One Care: MassHealth plus Medicare notice or form, or if you have any questions about OneCare, please call us at 1-800-841-2900 (TTY: 711 for people who are deaf, hard of hearing, or speech disabled). We do not discriminate on the basis of national origin.
To see the SCO plan comparison list follow this link: https://www.mass.gov/service-details/one-care-fact-sheets-other-materials
From United Spinal National
Protecting Access to CRT in the States
Coverage and funding at the state level play a key role in the availability and provision of CRT products and supporting services. NCART offers providers, manufacturers, associations, and policy makers strategic advice and direct advocacy on state issues to protect and improve access to CRT.
When a significant access issue is identified within a state, NCART's Payer Relations Committee and our state workgroups convene to review the problem, identify needed solutions, and implement the necessary advocacy plans. Below is a summary of some of our ongoing work:
Massachusetts – NCART, HOMES, and others continue working with legislators and consumer advocacy organizations to advance legislation that addresses CRT repair reform needs in the State; NCART has testified at multiple hearings and has coordinated meetings with key legislators in August and September; October committee hearings were held and NCART provided written and verbal testimony.
U.S. Access Board Webinar: Accessible Bathing Rooms
The design of bathing rooms can vary, but specific sizes, clearances, elements, and features are required to ensure bathing rooms are accessible to people with disabilities. The next webinar in the U.S. Access Board's free monthly series will take place November 2 from 2:30 – 4:00 (ET) and address requirements for bathing facilities in the Americans with Disabilities Act (ADA) and Architectural Barriers Act (ABA) Accessibility Standards for transfer showers, roll-in showers, and bathtubs in transient lodging/hotels, residential dwelling units, and other locations, which ensure those with disabilities have the option to clean themselves unassisted. Presenters will review and clarify the accessibility requirements for different types of accessible bathing fixtures and their associated components, including shower and tub seats, grab bars, shower spray units and controls, and required clearances.
Visit Great Lakes ADA Center’s Accessible Bathing Rooms webinar webpage for more information or to register. All webinars include video remote interpreting (VRI) and real-time captioning. Questions can be submitted in advance of the session or can be posed during the live webinar. Webinar attendees can earn continuing education credits. The webinar series is hosted by the ADA National Network in cooperation with the Board. Archived copies of previous Board webinars are available on the site.