June 2024 Advocacy Update
In case you missed it last month, below is an infographic outlining the SCIboston Advocacy Survey results from the beginning of the year. Thank you to everyone who responded. Your responses were incredibly helpful. As always, don’t hesitate to reach out with any questions!
Section 504:
In 1977, the course of disability rights changed forever with the signing of regulations that made Section 504 of the 1973 Rehabilitation Act actionable. It took four years of continuous activism, including nationwide sit-ins (and the famous 26 day sit-in at a San Francisan federal building) for regulations to finally be signed. Finally, the terms “disability” and “disability discrimination” were legally defined, allowing courts to enforce Section 504. All programs and activities receiving federal funds would no longer be able to discriminate on the basis of disability.
In the nearly 50 years since the Section 504 regulations were signed, there have been no major updates, until now. As of May 1st, 2024, a final rule has been published that updates Section 504’s regulations to “clarify several crucial areas not explicitly addressed in the current rule.” This final rule addresses, among other things: medical treatment, value assessment methods, child welfare programs and activities, web and mobile accessibility, accessible medical equipment, and integration. Some of the changes are outlined below:
Within two years, all federally-funded doctors’ offices will be required to have at least one accessible medical exam table and one weight scale, provided they use such equipment. Furthermore, 10 percent of a facility's medical diagnostic equipment must be accessible, and if a facility specializes in mobility conditions 20 percent of their equipment must be accessible. It also ensures that accessible equipment must be maintained in operable working order. However, the regulations do allow facilities to send patients to alternative locations that have accessible diagnostic equipment, if the original location doesn’t have accessible diagnostic medical equipment . Additionally, it prohibits discrimination in medical treatment, ensuring that disabled patients are not denied access to care.
The final rule prohibits entities such as Medicaid from the discriminatory use of “any measure, assessment, or tool that discounts the value of life extension on the basis of disability” when making decisions about eligibility, coverage, and access to services, such as the Quality Adjusted Life Year (QALY). It also adds significant protections to disabled parents and children, by prohibiting discrimination in decisions based on speculation, stereotypes, or generalizations, such as “a parent with a disability cannot safely care for a child”. Finally, it updates and aligns the definition of disability to the definition within the Americans with Disabilities Act (ADA). Read the fact sheet here.
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:
This month, the Senate Ways and Means released their version of the 2025 budget. Following the House’s budget, they also decided to block the implementation of the proposed cuts to the MassHealth PCA program. Recap: Those cuts would have removed anyone from the PCA program that receives less than 10 hours of care that assisted with their activities of daily living, such as toileting, dressing, feeding, and bathing. Moving forward, the House and Senate will align their budgets, and if Governor Healey is agreeable, she will sign the finished budget.
Long-term Care:
MassHealth is proposing the implementation of an independent assessment entity (IAE) of long term services and supports (LTSS). Currently, assessments and authorization for LTSS in Massachusetts are performed by hundreds of organizations. For example, assessments for the MassHealth PCA program are currently performed by 17 PCM agencies, such as the Boston Center for Independent Living, Northeast Independent Living Program, Stavros, and Tempus Unlimited.
Acquiring LTSS can be a complicated and time consuming process, and MassHealth intends to address these problems by implementing an independent assessment entity. According to MassHealth, the length of time that it takes to complete assessments and get someone enrolled into a LTSS program is very long. For the PCA program, it takes an average of 106 days from initial intake to completion of the Prior Authorization for PCA services. Additionally, in order to receive multiple LTSS services you would need to have additional assessments from an operating agency of that program. It is MassHealth’s hope that by implementing a standardized assessment process within a centralized system these problems will be addressed.
That being said, there has been considerable pushback from major disability and senior organizations. Primarily there have been concerns about consumer protections, an increasingly medicalized model of care, and a lack of involvement and engagement of the people that these programs serve. Largely, it’s agreed that these problems should be addressed, however, there is no consensus that an IAE would address them effectively. In fact, there is a lot of concern that the implementation would be very difficult, time and resource intensive, with no guarantee that consumers would end up with improved quality of care. Read more about it here and here.
MassHealth is requesting input on an IAE via a Request for Information (RFI). This RFI is an opportunity for you to share your concerns and suggestions with MassHealth. It is a formal document that intends to gather information from stakeholders on a potential good or service. Read the full RFI on COMMBUYS under file attachments. Beginning on page 13 of the RFI are further instructions on how to respond, or you can email Vita Brown at vita@sciboston.org with any questions. Comments are due by June 28th, 2024 by 5 pm. Please submit comments by email to Shukri Osman at shukri.osman@mass.gov.
Marsters v. Healey: 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. This agreement is intended to address the disproportionate rates of institutionalization of people of color in long-term care facilities. Individuals who could benefit from the Marster’s ruling are: disabled people age 22 or older living in a Massachusetts nursing facility for more than 60 days who have Medicaid or are eligible. They will be provided comprehensive case management and residential services and supports. Slots will be created in provider-operated group homes, DMH group living environments, rental subsidy program, additional subsidized housing opportunities, and home modifications. 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.
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: At the RTAG meeting this month, there was a presentation on proposed accessibility updates to commuter rail stations. These updates are a stop-gap measure to make inaccessible stations as accessible as possible, as quickly as possible. There are a variety of platforms that make commuter rail stations accessible, including: full length platforms that allow for level boarding at each train car and much shorter platforms that make the first two train cars accessible. Currently, 26 commuter rail stations are completely inaccessible.
US Department of Transportation regulations require newly built or substantially renovated stations to have accessible platforms that allow level access to every train car. In order to fully reconstruct all 26 stations within these regulations, it would cost around 1.25 billion dollars over the course of at least 15 years. However, as long as the underlying platform is not altered, the obligation to construct fully accessible platforms will not be triggered.
Therefore, the MBTA proposes building short accessible platforms that would rest on top of the existing infrastructure, allowing stations to become accessible more quickly and at a much lower cost. There are already plans to construct 13 platforms, with a total proposed cost of $39 million. Ultimately, every station will be updated to be fully accessible with level boarding at every train car, but until funding can be secured for such an expansive project, this method will allow currently inaccessible stations to become accessible.
On the topic of funding, the MBTA was one of 8 rail transit systems across the U.S. lucky to receive a total of $343 million in grants in 2024 under the Federal Transit Administration’s All Stations Accessibility Program (ASAP). This funding will be used to enable people with disabilities to independently use rail transit systems, aka the subway. This year, the MBTA will be upgrading station platforms for level boarding at 14 stops along the Green Line's light rail B and C branches that are not yet accessible.
State:
MassDOT announced Community Transit Grant Program (CTGP) awards totaling almost $20 million for expanding programs and purchasing vehicles for public transportation needs, emphasizing the needs of older adults, people with disabilities, and low-income individuals. Funded vehicles include a range of minivans and cutaway vehicles, varying in size to accommodate a range of fleet needs, and all models are wheelchair accessible. Check the list of recipients to see if your community or service agency is on it!
Federal:
Air Travel: On May 16th, President Biden signed the Federal Aviation Administration (FAA) reauthorization bill. This new law includes multiple provisions that make it safer for disabled passengers to travel. It requires regular staff training on assisting passengers with limited mobility and improved access to airline websites, applications, and information communication technologies. Additionally, they will continue to study the feasibility of in-cabin wheelchair tie-down systems, such as these and continue to improve the Department of Transportation’s (DOT) complaint process. Read more about the law here.
Additionally, the DOT is looking for your input! The deadline has been extended to Wednesday, June 12th. They have proposed a rule to strengthen the Air Carriers Access Act (ACAA) and ensure that wheelchair users can travel safely and with dignity. Read DOT’s press release for a summary of key provisions.
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
In the News:
Wheelchair Repair (Opinion): Mass Wheelchair Repair System is a Disgrace
Long Term Care: As Some Nursing Homes Cry Poverty, What Can be Done about Increased Staffing Requirements?
SSI: Social Security Finalizes Rule Expanding Access to SSI
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
Events:
BCIL’s Virtual Forum on Civic Engagement:
Thursday, June 6th at 2:00 pm, virtually
Register here.
Ever wanted to get involved in the political process? Join BCIL for a conversation that covers everything from how to register to vote to how to run for office. They will also cover required accessibility accommodations at the polling locations. ASL and CART will be provided. Contact Austin at aoconnor@bcil.org or (617) 338-6665, to request accommodations.
U.S. Access Board Webinar: Title II – Accessibility for State and Local Government Funded Facilities:
Thursday, June 6th, 2024 from 2:30 - 4:00 pm, virtual
Register here.
The Americans with Disabilities Act (ADA) provides protections for people with disabilities. Title II of the ADA covers accessibility requirements for state or local governments. In this webinar Access Board Accessibility Specialists will outline the different accessibility laws, how they apply, and compare the difference in requirements for government entities and private sector entities. Video Remote Interpreting (VRI) and real-time captioning will be provided.
United Spinal Association’s Advocacy LIVE:
Tuesday, June 18th, 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 groups.
Save the Date! Commemorating the 25th Anniversary of Olmstead:
Thursday, June 20th, 2024 from 2:00-4:00 pm, on Zoom.
On June 22, 1999, the Supreme Court ruled in Olmstead v. L.C. that unjustified segregation of people with disabilities is a form of unlawful discrimination under the Americans with Disabilities Act (ADA). For the first time, states were required to prioritize community inclusion by offering services (such as those offered by independent living centers) to people with disabilities. Attend to hear about the impact of Olmstead over the past 25 years, and what still needs to be done to achieve full integration of people with disabilities into our communities.
Semi-Annual MBTA Accessibility Settlement update:
Wednesday June 26th, 2024 from 5:30 - 7:30 pm, on Zoom.
Please register here.
If you use any MBTA transit services, this twice-yearly meeting will keep you informed of how the MBTA is improving accessibility in compliance with the settlement of Daniels-Finegold v. the MBTA, a landmark lawsuit that resulted in creation of the Department of System-Wide Accessibility (SWA) in 2007. Showing your interest adds strength to SWA’s power to upgrade stations, stops, and vehicles! Spanish, live captioning, and American Sign Language will be provided for this meeting. Other accommodations available upon request.
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.
From the Christopher and Dana Reeve Foundation:
Self-Advocacy Series: This is a seven-part video series on disability rights and self-advocacy. Explore disability history and learn about Section 504 and the Americans with Disabilities Act (ADA), and pick up tips on navigating healthcare, employment, housing, transportation, and education. Watch the series here.
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.
Boston:
Did you know? Boston has a number of restrooms open to the public. Sometimes they can be difficult to find. Below is a map of all of the public restrooms available in the city.
https://www.boston.gov/departments/311/public-restrooms-city-boston#map--239796
The Boston Disability Commission offers a number of programs, including how to apply for an accessible parking spot, requests for a curb ramp installation or repair, and additional information on housing, transportation and employment.
Housing:
The Housing Opportunity Through Modernization Act is changing things for Section 8 voucher holders. There will be a new asset limit of $100,000 for all voucher holders, with a few exceptions. Assets that are exempted from the limit are: retirement accounts, ABLE saving accounts, and medical devices. Additionally, Multifamily owners and Public Housing Authorities can choose to implement this rule in ways that protect people with disabilities currently relying on Section 8 vouchers for housing who may be above the asset limit. The National Low Income Housing Coalition has more information on implementing this rule in a way that doesn’t displace people with disabilities from their current housing, found here.
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.
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 July 31st 2024, if the Senate agrees.
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.
A new draft (H.4672) of this bill was created, consolidating a few other, similar bills.
Reported favorably out of committee and referred to the committee on House Steering, Policy and Scheduling.
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!