September 2024 Advocacy Update

Elections Are Quickly Approaching!

Are you registered to vote?

Register online in Massachusetts here, the deadline is October 26th! Learn how to register in your state here!

Do you know where your polling location is?

Find your Massachusetts polling location here!

Do you know your federal rights to voting as a person with a disability? 

Your right to vote is protected by a number of federal laws, including the ADA. You can vote in person or by mail. Sign up to vote by mail in Massachusetts here. 

Some examples of accessibility accommodations when voting in person: 

  • Service animal support

  • Bringing another person to help you fill out your ballot

  • Accessible parking spaces

  • Wheelchair accessible polling locations

If your polling location is not wheelchair accessible, you may be able to vote at another polling location or through curbside voting. Contact your state or local election office to confirm that your polling location is accessible to you. Want to improve accessibility at your polling place? Perform an accessibility audit with the National Polling Access Audit Coalition’s toolkit.

Voting News: Wisconsin Judge Greenlights Electronic Ballot Delivery for Disabled Voters and Federal Judge Tosses Ohio Voting Restrictions on Voters with Disabilities

PCA/Caregivers:

IAE: The Dignity Alliance hosted a listening session on the proposed Independent Assessment Entity for MassHealth. During this session, Mike Levine, MassHealth’s Executive Secretary, announced that they will no longer seek a single entity to perform assessments for long term supports and services (LTSS), such as the PCA program. 

This is a huge success that would not have been possible without your advocacy. MassHealth received 52 responses to their request for information, most of which were from community based organizations, non-profits, and advocacy groups. In addition, most expressed concern with the proposed Independent Assessment Entity and encouraged MassHealth to abandon the idea. Thankfully, MassHealth listened.

That being said, MassHealth still intends to seek proposals for a single entity that would address some of the issues with the current system, such as the long wait times for services and confusion around available LTSS programs. They assured the nearly 300 listeners that there have been no concrete decisions around what that entity would look like, and that they would be working closely with the Independent Assessor Entity Implementation Advisory Council. MassHealth also stated that they will continue to engage in conversations with current assessment providers and community organizations on improving the assessment process. 

If you missed the listening session, you can watch the recording here.

AI and Disability:

The U.S. Access Board held three hearings on disability and artificial intelligence (AI) this past month. Rapid changes in the field of AI has brought attention to ensuring that access to this technology remains equitable. All three hearings included presentations from AI practitioners, professionals, and individuals with disabilities. The presenters discussed the risks and benefits of AI and made recommendations to ensure the equitable inclusion of this technology.

AI has many opportunities to improve the lives of people with disabilities, from AI that “sees” for blind and low-vision individuals to autonomous vehicles that expand independence for those with physical disabilities. AI also has many opportunities to negatively impact the lives of people with disabilities, from its use in job application software to predictive medical treatment. These sessions were recorded and can be found here.

Transportation:

Local:

As of September 4th, the MBTA will allow eligible riders to sign up for a new low-income fare program. This low-income fare program will offer half-off bus and train fares to all riders with incomes below 200% of the federal poverty level, or less than $30,120 a year. Riders who receive MassHealth Standard, MassHealth Limited, or Supplemental Nutrition Assistance Program (SNAP), among a few other state assistance programs, should apply.  Reduced fares will also be applicable to certain RIDE trips, the commuter rail and ferry. Applications can be filled out online, or in person.

Travel:

Traveling with a wheelchair can pose some unique challenges. This is why Permobil has put together some checklists and guides on how to safely travel with your wheelchair. They also offer a downloadable travel tag for your chair. The United Spinal Association Care Support Work Group has provided resources for creating a care support plan while traveling. Marriott hotels agree to “improve its accessible-room reservation system.” And if you missed it, two airline companies race to have the first on-board wheelchair securement systems. 

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.

ABLE Accounts: Casey Introduces Suite of Bills to Expand Access to Savings Accounts for People with Disabilities

Follow Up on Roll on Capitol Hill:

In June, United Spinal Association held their annual Roll on Capitol Hill advocating for Home and Community Based Services (HCBS), improved wheelchair service and repair, and increasing the length of rehabilitation stays. Now is the time to follow up with your representatives on these issues and remind them of your stance. United Spinal an easy way to take action in their action center. Support Home and Community Based Care workers here, here, and here. Reform wheelchair service and repair. Create a pilot program that would help the length of rehabilitation stays. Ask CMS to change the “in the home” language.

Events:

U.S. Access Board Webinar: Medical Diagnostic Equipment Final Rule

Thursday, September 5th, 2024 from 2:30-4:00 pm, on Zoom.

Register here.

The Access Board has published a final rule addressing accessibility standards for Medical Diagnostic Equipment. The standards provide design criteria for equipment such as: examination tables and chairs, weight scales, and radiological and mammography equipment. This webinar will provide an overview of the guidelines. Video remote interpreting and captioning will be provided. Attendees can receive continuing education credits. 

DETAC: CILs Connecting People With Disabilities to Competitive, Integrated Employment:

Tuesday, September 10, 2024 from 3:00-4:30 p.m.

Register here. 

The Disability Employment Technical Assistance Center (DETAC) is hosting a webinar to discuss efforts to enhance access to competitive, integrated employment for people with disabilities. While this webinar is primarily aimed at Centers for Independent Living, it is also valuable for self-advocates and family members seeking additional resources to improve employment outcomes. Live captioning and ASL translation will be available.

U.S. Access Board: ADA Outreach and Barriers to Services for Spanish-Speaking Communities

Tuesday, September 17th from 2:00 - 3:30 pm, on Zoom

Register here. 

Language differences contribute to barriers to access and disability discrimination. Unfortunately there is a general lack of Spanish language resources for individuals with disabilities that educate them on their legal rights, such as the ADA. Outreach is necessary to address these barriers and improve access to resources, information, and support services. Continuing education credits are available for attending this webinar. 

United Spinal Association’s Advocacy LIVE:

Tuesday, September 17th, 2024 from 5:00-6:00 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.

MOD Webinar: Reasonable Accommodation and Modification Requests in Housing

Wednesday, September 18th, from 5:30-7:30 pm, on Zoom

Register here. 

Join the Massachusetts Office on Disability for an interactive workshop on the reasonable accommodation and modification request process in housing. This workshop provides information and examples for individuals with disabilities whether they live in rented housing or are owners in a housing/condo association.

September RTAG General Meeting:

Thursday September 26th, 2024 from 5:30-7:30 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.

Survey Opportunity:

This is an image of the flyer advertising for the photo survey for mobility aid users.

Researchers from the University of Washington are looking for mobility aid users to participate in a photo survey. The goal of this survey is to improve sidewalk accessibility for mobility aid users, such as people who use wheelchairs. Participants must be 18 years of age or older and be sighted. The survey will take approximately 20 minutes to complete, with the possibility of a follow-up interview. Participants will receive $10 for completing the survey. Please fill out this form to indicate your interest in participating.

From United Spinal Association:

Take Action: Tell DOT to Finish the Job on Safe Air Travel

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.

Health Equity: United Spinal has compiled a list of resources to help you receive the healthcare you deserve!

Emergency Preparedness: What Can Wheelchair Users Do in An Emergency Evacuation?

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. 

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.

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. 

Be a Better Research Advocate: 

The North American Spinal Cord Injury Consortium (NASCIC) is offering a free course on research advocacy. Including individuals with SCIs and their caregivers in the research process is critical to improving the quality of SCI research. This course intends to increase knowledge about the research process for advocates and offer tools to  researchers and healthcare providers to be better partners of the SCI community. This course includes 12 modules, each with a quiz at the end. You will receive a Certificate of Completion upon completion of the course with passing scores. It will take approximately 6 hours to complete the course. Click here to get started with the course.

Boston:

Did you know? Boston has a number of restrooms open to the public. Sometimes they can be difficult to find. Here is a map of all of the public restrooms available in the city.

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. 

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. 

The VITAL Act:

H.R.8380, or the Visitable Inclusive Tax Credits for Accessible Living (VITAL) Act aims to increase the number of affordable accessible housing units in the nation. It would increase funding for the Low-Income Housing Tax Credit (LIHTC) program, increase funding for developers who build units that are accessible to people with disabilities and in locations that are connected with their community, and require that at least 40 percent of the units constructed under LIHTC are adaptable/accessible for people with disabilities. Read the fact sheet here.