April 2024 Advocacy Update
Caregivers/PCAs:
On March 20th, there was a rally at the State House in opposition to the MassHealth PCA program budget cuts. Nearly 200 people showed up from numerous organizations including: nearly every independent living program, the PCA union - 1190 SEIU, the Disability Policy Consortium, The ARC of Massachusetts, Health Care for All, and Tempus Unlimited. Even more importantly, dozens of people with disabilities showed up to advocate for themselves. Participants marched on the Governor's office to express their opposition to these cuts and then marched on House Ways and Means to ask that their proposed budget doesn't include cuts to the MassHealth PCA Program. If there hasn’t been a response by next week, there will be another rally.
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 by disqualifying individuals that receive fewer than ten hours of daily living activities assistance (such as eating and toileting). This five hour reduction in hours will affect everyone who receives meal preparation assistance. The hours needed for instrumental activities of daily living (IADLs), such as laundry and shopping, 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, and thousands of unpaid caregivers will need to step up to fill the gap. Additionally, MassHealth proposes to shift evaluations from the independent living centers to a central entity, which could lead to a medical model of service that doesn’t take into account individual needs and thereby a reduction of services. 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. Read more here. Read an opinion article here.
If you would like to comment on these changes to the MassHealth PCA program, call Governor Healey at (617) 725-4005 or (888) 870-7770, or write to her here.
If you are opposed to these cuts to the PCA program, there is a petition to be signed here.
Transportation:
Local:
MBTA: Platform gaps between platforms and train cars can be treacherous or impossible to navigate for a wheelchair user. At last month’s RTAG meeting, the MBTA presented their findings on platform gap issues on Orange Line trains. As most of us already knew, they found that there is significant variability in the gap sizes between stations, train-cars, and along the total length of each platform. The MBTA is working to address this issue long-term, but in the meantime, will be installing rub rail material to reduce horizontal gaps. The long-term actions will involve using laser technology to inform decisions about potential track and platform modifications.
Parking: On March 13th, Boston City Councilor FitzGerald filed a motion proposing that pregnant individuals have access to accessible parking spaces, through the use of temporary parking placards. Their physician must certify that they have a walking disability in order to qualify. There is no mention of adding any accessible spots in the city, or adjusting the accessible parking space requirements. This motion is currently supported by every city councilor. There will be a hearing where the public can offer comments, however, that date hasn’t been set yet. When posted it can be found here. Once the hearing is held, the Boston City Council will offer its recommendations to the MA Registry of Motor Vehicles (RMV) and from there, the RMV will decide what action, if any, to take on the issue.
You can find a copy of motion 0508 here. Scroll to attachments and click “pregnancy parking placards” to download the PDF. You can also watch the video of the Boston City Council Meeting here; the motion on parking begins at 45:17 minutes and ends at 51:50 minutes.
Parking Background: Massachusetts’ current laws around accessible parking placards allow for temporary placards as well as permanent placards. The eligibility requirements are the same for both types of placards and include “cannot walk 200 feet without stopping to rest”. Temporary placards apply to individuals who have a temporary disability that lasts at least two months. According to the New England ADA Center, pregnant people experiencing a temporary walking disability as certified by their physician would qualify for a temporary parking placard under the current law.
As most of us know, accessible parking is incredibly difficult to find in Massachusetts, and part of this is because not enough accessible parking spots are required. First, the number of parking spots is based on the total number of spaces available in each lot, instead of the density of the population. Second, the number of accessible parking spaces required accounts for around 2%-4% of the total number of spaces available (please see the table below, for the exact breakdown). Nationally, the needed amount of accessible spaces is estimated to be nearly 10%. In other words, on average there is a need for 6-8% more accessible parking spaces.
According to a recent Globe article, “4,724 disability plates and 362,087 permanent disabled parking placards were active as of Jan. 31, according to the [Massachusetts] Registry of Motor Vehicles”. The number of accessible parking spaces in the state was not provided. The United Spinal Association has found that there are approximately seven placards and plates for every 100 registered vehicles in Massachusetts. In other words, 7% of the parking population needs an accessible spot. That means that parking in Boston for a disabled individual could be anywhere from 2-4 times more difficult than for someone who is able bodied. This doesn’t take into account the need for van accessible spaces, which are significantly more difficult to find, and required in much lower numbers. It is important that there are enough accessible parking spaces for everyone who needs accessible parking.
*https://www.ada.gov/topics/parking/
**https://unitedspinal.org/pdf_advocacy/Parking_Issue_Paper.pdf
Federal:
Air Travel: The U.S. Department of Transportation (DOT) is looking for your input! 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 through Monday, May 13, 2024.
Read DOT’s press release for a summary of key provisions.
Permobil published a synopsis of this proposed rule, read it here.
United Spinal Advocacy Day:
United Spinal hosted a Virtual Advocacy day on March 13th. Over 100 advocates across the country attended meetings with Congressional offices to ask for increased funding to the SCI Model Systems, change Medicare’s “in home use” language for durable medical equipment, and open the National Coverage Analysis (NCA) for coverage of power wheelchair standing systems. Overall, these meetings went very well and indicated favorable support for these issues from Congress.
SCI Model Systems, such as Spaulding Rehabilitation Network, rely on funding from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR). Unfortunately, funding for the SCI Model Systems has not kept pace with the SCI community’s needs. The funding has not kept up with rates of inflation, nor the significant growth of the SCI community. An increase of funds would increase the amount of inpatient rehabilitation, improve research and development, and continue to provide education.
In 1965, the Social Security Act defined the difference between coverage of medical devices in a hospital setting (Medicare Part A) and medical devices for use at home (Medicare Part B). Since then, coverage of needed durable medical equipment and mobility devices, such as wheelchairs, would be provided only if it was deemed necessary for activities of daily living within the home. United Spinal, among other disability organizations, ask that Congress direct the Centers for Medicare and Medicaid Services (CMS) to update the “in the home” rule to include “in the community”. This would allow for insurance coverage of mobility devices that would allow individuals to participate more fully within their communities. For example, an individual could get coverage for a wheelchair that can climb stairs to access their previously inaccessible job.
Finally, it was requested that Congress ask CMS to open a NCA for coverage of standing systems for power wheelchairs. This is the next step in educating CMS on why access to standing systems are a health necessity for many wheelchair users. The beneficial health impacts can include improved cardiovascular health, bone density and digestive health, pressure management, and reduced spasticity and tone. Allowing standing systems to be covered by CMS would allow many people access to the health benefits of standing that they otherwise would not have access to.
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. Among other things, these changes would increase eligibility for home repair assistance, including allowing accessibility improvements to homes damaged by disaster. Comments on the IFR can be submitted online until July 22, 2024.
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.
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:
U.S. Access Board Webinar: Vertical Access: Elevators, Lifts, and Stairs
Thursday April 4th, 2024 at 2:30 pm, zoom
Register here.
This webinar will cover requirements for vertical access as laid out in the Architectural Barriers Act (ABA) and the Americans with Disabilities Act (ADA). Presenters will also cover the scoping and technical requirements for elevators, platform lifts, and stairs. All webinars include video remote interpreting (VRI) and real-time captioning. Attendees can earn continuing education credits.
Adaptive Trail Mobility Equipment and Programming 101
Thursday April 11th, 2024 at 1:00-2:00 pm, Zoom
Register here.
This webinar is aimed at those in charge of trails, equipment and programming, but if you participate, you’ll be able to provide the perspective of the wheelchair user! Topics include types of adaptive mountain bikes and off-road wheelchairs (both motorized and non-motorized) and various types of adaptive trail programs.
United Spinal Association’s Advocacy LIVE:
Tuesday April 16th, 2024 from 1:00 - 2:00 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 working groups.
April RTAG General Meeting:
Thursday April 25th, 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.
ICDR Webinar: Including People with Lived Experiences on Research Teams:
Tuesday April 30th, 2024 at 12:00-1:00 pm, zoom
Register here by April 22nd.
Listen to a moderated panel discussion about including people with lived experiences on research teams. There will be a public Q&A at the end of the meeting. ASL interpreting and live captioning will be provided.
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.
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
Reported favorably out of committee and referred to the Committee on Health Care Financing
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, if the Senate agrees.
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, if the Senate agrees.
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.
Reporting date extended to Friday April 12, 2024
Bill reported favorably by committee and referred to the committee on Bonding, Capital Expenditures and State Assets.
Hearing Scheduled for April 2nd, 2024 1:00-5:00 pm in A2, Statehouse.
Written testimony will be accepted until 5:00 pm on April 2nd.
Bill reported favorably out of committee and referred to Senate Ways and Means
This bill would permit the MBTA to issue tickets to people who park in bus stops via camera systems. Read more here.
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!