February 2024 Advocacy Update
Big things afoot this month! As most of you know the Wheelchair Warranty and Repair bill passed the MA Senate earlier this month. This means it’s well on its way to becoming a law, but first, it must pass the House as well. If you’d like to show your support for this bill, email your representative! You can find a template here.
In order to pass in the Senate, this bill was amended. The largest change lengthens the amount of time a dealer has to get a loaner chair to a consumer. In the original bill the amount of time is four business days. The amendment states four business days for a "standard wheelchair" (any chair that doesn't need modifications) and eight business days for a wheelchair that can be modified.
The other large change is that the original bill would require companies to do an assessment of a wheelchair within three business days of being notified. The amendment states that the companies must virtually assess within three business days and must provide an in person assessment if necessary within four business days.
These changes around wheelchair repair wouldn’t have happened without all of you speaking up. So thank you, for all you have done, and all you will continue to do.
Which brings me to your responses to the Advocacy Survey. I cannot thank you enough for taking the time to fill those out; the information that you provided has been invaluable. I’ll be working on getting back to those of you that were interested in a response in the coming months. And if you haven’t had a chance to fill out the survey, please do so now! Your engagement will direct me to the most pressing issues faced by our community.
Housing:
There was a hearing on Governor Healey’s omnibus housing bill this month. Over 250 people signed up to testify on the “Affordable Homes Act” in a hearing that lasted for over six hours. The parts of the bill that affect our community are changes to the Alternative Housing Voucher Program (AHVP), The Home Modification Loan Program (HMLP), and Community Based Housing (CBH). The Alternative Housing Voucher program is a housing program offering rental assistance to low-income adults with disabilities age 60 and under. The Affordable Homes Act would allow project-based vouchers for AHVP. Currently, all AHVP vouchers are tenant-based, meaning that the individual can apply to any housing unit that meets the state’s sanitary code, and use the voucher. Project-based vouchers would allow specific units or developments to accept eligible tenants. Other housing programs in Massachusetts already allow for project-based vouchers.
The Governor’s bill would set the funding rate for the HMLP to $60 million. The HMLP is a loan program that offers a no interest loan to modify the homes of seniors or individuals with disabilities. The Governor’s version of the Affordable Homes Act allocates $55 million to CBH. Community Based Housing funds the development of housing for people with disabilities who are leaving or at risk of entering an institutional facility.
Caregivers/PCAs:
In the fall of 2023, the PCA union, 1199 SEIU, won a new contract for PCAs working the Masshealth PCA program. The new union contract is for the next three years, and provides a pathway to $25 an hour for PCAs*. Currently PCAs working for the Masshealth program make $19 dollars an hour, up from $18 last year. This rate will increase to $19.50 in July.
Also happening in July is the start of the 2025 fiscal year. January marks the start of budget season and there is uncertainty about how it will impact people with disabilities. The Governor’s proposed 2025 fiscal year budget proposes to keep spending flat for the Masshealth PCA program. This could mean cuts to service. According to an article by WBUR, the proposed budget would cap the number of hours authorized for meal prep and would change “PCA eligibility for people who get less than 10 hours of services per week”. Read more here.
*some restrictions apply
On the national front, United Spinal Association held a care support webinar where we heard from caregivers and advocates about how to find, hire, train, and retain care support. If you missed it, the recorded video will be posted later this month. In the meantime, stop by the care support page here, or join the care support working group.
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 (to the right) 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).
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.
Transportation:
The January monthly meeting of the MBTA Riders’ Transportation Access Group (RTAG) focused on winter barriers to transit by disabled riders, and recent performance of The RIDE. RTAG board members are working closely with the MBTA to improve coordination between municipalities and the MBTA on clearing snow from stops and stations, and the surrounding sidewalks. Please share your snow-related transportation problems with RTAG! Contact Kat Torres, RTAG Facilitator, at ktorresradisic@bostoncil.org.
Participants also heard from MBTA management that performance metrics for The RIDE are improving. The call center is fully staffed, with wait times for the vast majority of calls under two minutes, and on time performance is back up to 89%, with very few long delays. MBTA staff are pushing for more improvements and the biggest goal continues to be a fully employed driving staff. Twenty percent of driver positions remain open. Some disabled stakeholders attending the meeting complained of no-shows, delays, and unpleasant interactions with call center employees. MBTA management takes these problems seriously. Please report all problems to the Customer Support Center so they can be traced and fixed!
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.
Wheelchair Repair:
The Federal Trade Commission (FTC) has opened a public comment period on Right to Repair, and has asked for public feedback on whether the agency needs to create new rules to protect repair choice, including requiring more open access to repair documentation, parts, training and software tools. Simply put, this petition requests that the FTC protect consumers' right to repair products they have purchased. This is a great opportunity to share your story and have it positively impact policy. Anyone in the states can submit a comment! Questions? I will be happy to answer them, or help you write a comment. There are also helpful guidelines here, and further information here.
Action Alerts:
Masshealth’s Estate Recovery Policy:
Currently, Massachusetts law requires MassHealth to seek repayment for the cost of all medical services provided after an enrollee turns 55. In many cases, the repayment funds come from the sale of a family home – also known as Estate Recovery. This bill would limit recovery to only what is federally mandated. Click here to express your support by sending an email to your legislator.
Support the SSI Savings Penalty Elimination Act:
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. Click here to express your support by sending an email to your representative.
Support 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. Please write to your Congressional representatives. You can find your representative here.
Bills on Our Radar:
The following bills are still accepting written testimony:
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.
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 FAQ/outline here. If you have any questions, please email vita@sciboston.org.
If you’re looking for a synopsis of these bills, more information can be found over at the Disability Policy Consortium.