October 2021 Advocacy Update
Access Complaint Form
Have you encountered barriers when trying to visit local stores or restaurants?
It's super easy to file a complaint with the state Architectural Access Board (AAB), and you don't need a lawyer!
Visit the AAB website at here for more info. For technical assistance on filing a complaint, send an email to Michael Muehe, Access Analyst for the Boston Center for Independent Living at mmuehe@bostoncil.org.
Transportation
Field Test the new MBTA bus Wheelchair Securement System
Even if you currently don’t travel by MBTA transit bus, please help the broader SCI/D community by testing a new, automated wheelchair securement system called Quantum. For many years, the MBTA has used a four-point manual securement system that requires drivers to assist riders. The new system being tested allows riders to independently secure and release their device with the push of a button, and offers more upper-body stability during hard stops. See a demonstration, try it out, and give feedback at one of the October in-person sessions!
October 6:
October 14:
RIDE paratransit trips from Logan Airport will be free beginning October 1
The MBTA announced that RIDE trips that originate from all Logan Airport terminals and end within three-quarter miles of the MBTA’s subway system will be free beginning Friday, October 1, 2021. This service complements the free transit service offered to riders on the fixed-route system from the airport.
Feel free to contact Abby Swaine, Chapter Advocacy Rep, at abby.swaine@gmail.com to share experiences and ideas!
Take Action
Spinal Cord Injury Model Systems
United Spinal Association has been advocating over the past year for increased funding for the Spinal Cord Injury Model Systems https://msktc.org/sci/model-system-centers to add 4 additional SCI Model Systems sites across the country, and we are hopeful that when Congress is able to pass its fiscal year 2022 appropriations bill that this additional funding and directive to the National Institute on Disability, Independent Living, and Research Rehabilitation (NIDILLR) will be included. The House of Representatives bill that was passed in July included $2 million explicitly for NIDILRR to increase the number of SCI Model Systems above 14.
We would like to ask you to help United Spinal Association make sure that we let the Senate offices in these respective states know that this is a priority for them to support and they need to weigh in with the Senate Appropriations Committee offices in charge of this process. In this case, this means Senator Leahy (D-VT) https://www.leahy.senate.gov/contact who is Chair of the full Committee; Senator Shelby (R-AL) https://www.shelby.senate.gov/public/index.cfm/e-mail-senator-shelby-landing who is Vice Chair of the full Committee; Senator Murray (D-WA) https://www.murray.senate.gov/public/index.cfm/contactme who is the Chair of the Subcommittee that includes health care; and Senator Blunt (R-MO) https://www.blunt.senate.gov/contact/contact-roy who is the ranking member of that subcommittee.
Massachusetts- if you could reach out to Adam Axler for Senator Markey (adam_axler@markey.senate.gov) and Tess Byars for Senator Warren (tess_byars@warren.senate.gov) on this that would be great. We're looking for the Senate offices in the states involved here to write a letter to those four Appropriations Committee leaders urging them to support including the increased funding and language that the House of Representatives passed in their appropriations bill in the Senate’s version.
Here are some of the talking points we are sharing with advocates:
There is a critical need of increased funding for NIDILRR which grants funding for all competitive grants for the Model Systems including Burn, TBI and Spinal Cord Injury.
Seeing the dire need for increased funding, funding has remained stagnant for approximately two decades; the SCI population has increased 50% from 200,000 to 300,000 according to statistics from the National Spinal Cord Injury Statistical Center, while the number of Model Systems has decreased from 18 to 14. We would like to see it increased from 14 to 18 again.
The SCI research community has elicited interest from multiple Congressional offices about the needs of the SCI community highlighting the unique expertise and multidisciplinary approach to rehabilitation and program supports that the SCIMS provide.
Now, our focus has turned to the Senate and the SCI medical and research community is advocating for the same or similar language in the Senate’s L-HHS-Ed Appropriations Committee Report as was in the House of Representatives’; L-HHS-Ed Committee Report.
Here is the relevant committee report language for the House-passed Labor-HHS-Education bill, July 2021, page 228.
National Institute on Disability, Independent Living, and Rehabilitation Research
The Committee recommends $124,800,000 for the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), which is $11,830,000 above the fiscal year 2021 enacted level and $6,181,000 above the fiscal year 2022 budget request. NIDILRR generates knowledge and promotes its effective use to enhance the abilities of people with disabilities to perform activities of their choice in the community and to expand society’s capacity to provide full opportunities for its citizens with disabilities. The recommendation includes funds to increase annual grant funding to competitively funded model systems centers, and a $100,000 increase for the Traumatic Brain Injury Model Systems National Data and Statistical Center (NDSC).
Spinal Cord Injury Model Systems (SCIMS)—The Committee is concerned with the growing number of people living with a spinal cord injury in the U.S. and recommends $2,000,000 to increase the number of Federally-funded SCIMS Centers.
If you have any questions, please reach out to Steve Lieberman.
Thank you,
Stephen M. Lieberman, Director, Policy & Advocacy
United Spinal Association
1660 L Street NW, Suite 504
Washington, DC 20036
Office: 202-556-2076 ext. 7104 Fax: 202-223-2380
E-mail: slieberman@unitedspinal.org Web: www.unitedspinal.org
URGENT Federal Action Needed
National United Spinal wants to make sure that we are keeping up the pressure on Congress to pass important priorities for our community. Please take a few moments to send these action alerts to your elected officials in Congress.
Fully Fund Caregiving in the Build Back Better Act
Funding for Medicaid home and community-based services (HCBS), which helps to keep people with disabilities in our own homes and part of our communities, has long been neglected. People get stuck on waiting lists for years. The direct care workforce is underpaid. Family members are often forced to become unpaid caregivers for their loved ones.
Congress is currently considering the Build Back Better Act, legislation that includes many updates to the social safety net, such as Medicare and Medicaid. Please tell Congress to include full funding for caregiving in this bill!
Include SSI Reforms in the Build Back Better Act
For many people with disabilities, Supplemental Security Income (SSI) can be a lifeline. However, many of the provisions relating to eligibility, such as rules regarding additional earned income and the amount of assets an individual or a married couple may retain, have not been updated in 30 years or more, and as a result both income and assets have not kept up with inflation and are unnecessarily punitive to people with disabilities.
Please tell Congress to include long-overdue updates to SSI in the Build Back Better Act!
With just a few clicks, you are truly making a big difference for our community. With your help, let's work together to get our community's priorities across the finish line.
Thank you all
Sign on to Fight Healthcare Discrimination (H.1256/S.745)
From the DPC:
Roughly 60% of those killed by COVID-19 have been people with disabilities, a problem caused not only by the virus itself, but by discriminatory responses to it.
Throughout this crisis, people with disabilities have been systematically shown that our lives are less valued by our medical system than those of our able-bodied peers. Disabled patients have had their doctors cut off life sustaining care because their lives were deemed to be not worth living (as happened in the Michael Hickson case ). We've heard from people with disabilities and their families who were pressured to sign Do Not Resuscitate (DNR) orders before receiving care, including pushing an elderly woman without her hearing aids to sign a form she did not understand. Worst of all, our own state’s initial Crisis Standards of Care would have explicitly sent disabled and elderly residents to the back of the line for live-saving COVID-19 care because our lives were judged less worth saving.
That is why we need you to sign on to support H.1256 and S.745, "An Act relative to preventing discrimination against persons with disabilities in the provision of health care," filed by Representative Cutler and Senator Chang-Diaz. This bill will ensure that people with disabilities in Massachusetts cannot be denied or deprioritized for treatment on the basis of disability, and that their lives will not be devalued through the use of discriminatory measures or metrics. It establishes, at every level of healthcare, the basic principle that the life of every Massachusetts resident is equally valuable, and that whether someone gets healthcare should not be based on someone else’s subjective and often biased assessment of their quality of life, while still safeguarding the ability of doctors to make objective medical decisions. It also would follow in the footsteps of Oregon in making it illegal to pressure individuals or their families into signing a DNR or other advanced directive in order to
Please stand with the disability community in supporting this critically needed legislation. This community is counting on you to stand up for disability rights and against discrimination.
To endorse these bills on behalf of an organization, click here
To endorse these bills as an individual, click here