August 2024 Advocacy Update

With the end of July came the end of the formal session at the State House and we wanted to give you a thorough report on all that occurred in the whirlwind of last week. Thank you for giving us a little extra time to get this to you. So without further ado!

What’s the significance of the 31st of July?

It’s the official end of the formal session at the State House. From now until January legislators will meet twice a week in informal sessions. 

What’s the difference between formal and informal sessions?

Bills must pass unanimously during informal sessions, whereas during formal sessions a bill can pass as long as it gets the majority vote. This has to do with how the vote is taken. It makes advancing a bill much more difficult, since the bill must pass through without any opposition. 

What about a special formal session?

On Friday, August 2nd, 2024, Governor Healey requested that the Legislature continue to work on her economic development bond bill, despite the fact that bond bills cannot be voted on in informal sessions. Both the Senate and the House have suggested that they’re open to calling a special formal session – the last one was held during the peak of the COVID pandemic in 2020. Doing so could open the door for other bills that otherwise wouldn’t have a chance. 

What does all of this mean for the bills we have been watching?

Unfortunately most of the bills that have been on our radar have been met with some resistance, making it highly unlikely that they will pass in informal sessions.This means that the bills will need to be reintroduced next January for the process to start all over again.  Even if a special formal session is held, it is unlikely that these bills will squeak through unless attached to a more priority bill. For example, the bill on estate recovery has been attached to the long-term care bill through an amendment put forth by Senator Comerford (though this bill is also facing an uphill battle due to dissension in its conference committee).

Before you lose hope, it's common for bills to take a few sessions before they’re passed. Take for example, the newly passed parentage bill. Advocates have been pushing to update parentage laws in MA for years and some of which have not been updated 1986. Continued, unrelenting advocacy led to the bill’s success.

What can I do?

In the meantime, you can continue to write and call your legislators on the issues you care about. Continuing to put pressure on legislators to create the changes you want to see will make it more likely that those issues will be prioritized the next time around. Find your legislators here. 

Which bills passed before the “deadline”?

✓ The Affordable Housing Act:

Probably one of the most hotly debated bills, Governor Healey’s Affordable Housing Act passed in the wee hours of the morning on August 1st. It’s a giant bill, so let’s look at the aspects that apply to people with disabilities. The bill secured funding for the Home Modification Loan Program (HMLP) and Community Based Housing (CBH), made changes to the Affordable Housing Voucher Program (AHVP), and established a commission on affordable accessible housing for people with disabilities. 

Funding for the HMLP stayed the same from prior years at $60 million, allowing thousands of people to secure a loan to modify their homes. Despite advocacy from various disability organizations, funding for CBH stayed at $55 million, instead of increasing to the recommended $110 million. CBH provides funding to develop housing for people with disabilities who are leaving or at risk of entering an institution such as a long-term care facility or nursing home. 

Now for some successes. The bill amends the AHVP statute to allow for project-based vouchers in addition to mobile vouchers. Project based vouchers stay with the unit, rather than moving with the individual, and should lead to the creation of more accessible housing. Finally, the creation of the commission on affordable accessible housing will provide an opportunity to research and report on ways to improve access to affordable accessible housing for individuals with disabilities.

✓ An Act to Ensure Legal Parentage Equality:

The passage of the Parentage bill has been touted as a big success for LGBTQ+ families, and while that is the case, it is also a big success for anyone that is a non-biological parent to their child(ren). This includes people who use alternative methods, such as in-vitro fertilization and surrogacy, to have children. As the law currently stands, non-biological parents must legally adopt their children in order to secure full parental rights. The legal adoption process is time consuming and expensive, and the delay in parental rights can be catastrophic for some families. This bill will make it significantly easier for families to establish their parental rights, no matter how their family came to be. 

✓ An Act Honoring, Empowering, and Recognizing Our Service-members and Veterans (HERO Act):

The HERO Act will make more veterans eligible for state benefits by broadening the definition of a veteran. Veterans will also be eligible for more tax benefits and other state benefits. Of particular note, the annuity for disabled veterans will increase by $500 and access to behavioral health benefits will be expanded by allowing veterans to be reimbursed for outpatient visits. 

What about the Wheelchair Warranty and Repair bill?

Unfortunately, at this time the Wheelchair repair bill has not been acted upon. It is currently being reviewed by the Committee on Health Care Financing and the reporting date has been extended to December 31st, 2024. Advocates, legislators, and lobbyists have been engaged in talks trying to find a compromise on the details of the legislation. Without the simple majority vote of the formal session, the bill will have to see unanimous support from all members of the House. The best way to see this bill passed will be to write your support to the committee members explaining which aspects of the bill are critical to you and why.

PCA/Caregivers:

Thanks to all of your relentless advocacy, the PCA Program was protected in the budget! Governor Healey signed the 2025 fiscal year budget on Monday, and while there were some line items that didn’t make the cut, PCA hours were not one of them.

Originally, Governor Healey had proposed to cut PCA consumers from the MassHealth PCA program that are awarded less than 10 ADL hours (such as bathing, feeding, and transfers) regardless of additional IADL hours (such as grocery shopping and laundry). Protesting such a change, numerous disability and elder organizations held events at the State House and thousands of advocates got involved.

The House and Senate responded by advancing and supporting budget language that prevented these cuts. The program’s protection was confirmed when the Governor signed the budget on July 29th.

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.

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. 

Transportation:

Local:

Big changes have come to the MBTA with an update to the ways riders can pay to ride public transportation. These changes will be rolled out over the next few years, starting this summer with contactless payments. Instead of only being able to pay with pre-loaded Charlie cards and tickets or with cash, riders can now pay with tap-enabled credit cards or mobile wallets like Apple Pay or Google Pay. Riders that are part of a reduced fare program, will also be able to take advantage of this change after attributing their reduced-fare credential to their contactless payment. In time, there will be additions to the turnstiles, offering a hands-free option that will allow riders who use wheelchairs to roll through without stopping to tap their card. Read more here.

This month, RTAG sent out their newsletter with an outline of their primary concerns including, platform gaps along the Orange Line, bike lane safety, blocked bus stops and bus lanes, and service animal refusals by Lyft and Uber drivers.

1. Platform Gaps: The MBTA will be performing track adjustments where possible to reduce the size of the gaps along the Orange Line. In time, stations will be renovated to bring the platform level with Orange Line train cars. 

2. Bike Lane Safety: The introduction of bike lanes have caused safety issues for people with disabilities that have to cross the bike lane to board a bus. RTAG will continue to partner with local biking communities to prioritize safety for both cyclists and people with disabilities. 

3. Blocked Bus Stops: There is very little enforcement around illegal parking in bus stops and bus lanes. RTAG has been a proponent of legislation that would allow for automated bus enforcement, through the use of cameras and ticketing by mail. 

4. Service Animal Refusals: In light of numerous reports of drivers for Lyft and Uber refusing to transport service animals, RTAG has entered into a number of advocacy efforts with Uber, Lyft, and the Department of Public Utilities (DPU).

If you have experienced any issues with the above please reach out to RTAG to get involved!

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. 

In the Media:

Long Term Care: MassHealth and the Budget

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

SSI: Social Security Says It's Improving a Major Practice Called Unfair by Critics. 

Teach Disability History: Teaching Disability History in Schools is 'long overdue,' Advocates Say

Watch:  Crip Camp: A Disability Revolution

Input Opportunity:

Comments are due Monday, August 12th, 2024. The Office of Management and Budget (OMB) is seeking input on adding “Care Workers” to the Standard Occupational Classification (SOC) Manual. The SOC provides standardization for occupations, ensuring “consistency and comparability of occupation-based data”. Currently, the SOC contains occupations that include some direct care workers but lacks a designation that specifically captures the work of care workers who support older adults and people with disabilities. As a result, policymakers do not have the data they need to make important decisions about the range of direct care workers that provide home and community based services. Comment here. 

Events:

U.S. Access Board: Access to Medical Care Facilities, Exam Rooms, and Long-Term Care Facilities:
Thursday, August 1st, 2024 from 2:30 - 4:00 pm
Register here.

Join the U.S. Access Board for a webinar on the Americans with Disabilities Act Accessibility Guidelines for licensed medical care facilities including hospitals, rehabilitation, psychiatric and detoxification facilities, licensed long-term care and assisted living facilities, and facilities specializing in treating conditions that affect mobility. The standards for accessible medical diagnostic equipment will also be discussed. Video remote interpreting and real-time captioning will be provided. 

U.S. Access Board to Hold Virtual Hearings on Artificial Intelligence (AI):

The Access Board is holding public hearings with members of the disability community, Federal Agency AI leaders, and AI practitioners. In total, there will be three hearing sessions: two for the disability community and one for federal agency and AI industry practitioners. If you would like to make a public comment are required to register via the instructions linked here. Registered speakers will have two minutes to present comments. If you missed the information session, a recording can be found on Youtube, here. 

Disability Community Hearings:
August 8th, 2024, from 10:00 am - 12:00 pm
August 8th, 2024, from 2:00 pm - 4:00 pm
Click here to join
Meeting ID: 160 039 9391, no passcode

United Spinal Association’s Advocacy LIVE:
Tuesday, August 20th, 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.

Quarterly Tea with MOD: Hosting Accessible Events and Meetings:
Tuesday, August 27th, 2024 from 1:00 - 3:00 pm
Register here.

Help ensure accessibility for all! Join the Massachusetts Office on Disability (MOD) to learn the best practices for planning accessible events.

Disability in Employment Virtual Workshops:

The Massachusetts Office on Disability (MOD) offers a Client Assistance Program (CAP) that hosts a series of workshops throughout the year over zoom. Learn about the advantages and disadvantages to disclosing your disability, how to request reasonable accommodations, and how to identify discrimination.

From United Spinal Association:

Take Action: 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. 

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. 

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. 

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. 

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.