February 2022 Advocacy Update

United Spinal Association, the national organization to which the Greater Boston Chapter belongs, is strong on advocacy. United Spinal has launched a Pathways to Employment job portal to help connect those with SCI/D with employers eager to recruit them. They’re also recruiting testers for inclusive technologies under a new Tech Access Initiative. Look out for more news on the 2022 launch of United Spinal’’s “Strong Wheeled Together” campaign at the Action Center.

Transportation

The MBTA is proposing fare changes that are favorable to “reduced fare” riders, including those with disabilities using the Transportation Access Pass. Reduced fare monthly passes are currently available only for regular bus and subway service, but are now proposed for Commuter Rail, Express Bus and Ferry service. Support this change by March 3 using a feedback form, and/or attend a hearing on February 10 or 17 – all info is available here. Overall, the MBTA is making progress on system-wide accessibility improvements; you can remain up-to-date by signing up for email updates.

Help Pass Accessible Housing and Workplaces Legislation

Please join the ongoing advocacy to pass legislation to address the need for safe, accessible housing in our communities for older adults and people with disabilities as well as legislation to remove barriers to employment for people with disabilities. 

It’s always good to email and call your state senator and representative. You can get the contact information by putting your address into Find My Legislator.

Ask your Senator to cosponsor and support S.1629 ACCESSIBLE MA ACT that deals with housing and workplace accessibility.

Ask your Representative to cosponsor and support H.2420 ADAPTABLE HOUSING MA that focuses on housing. And H.2419 ACCESSIBLE WORKPLACES MA that focuses on making workplaces accessible.

More details about each piece of legislation can be found on these fact sheets:

ACCESSIBLE MA ACT (Senate) fact sheet

ADAPTABLE HOUSING MA (House) fact sheet

ACCESSIBLE WORKPLACES MA (House) fact sheet

PCA Program Updates 

Chris is the vice chair of the PCA Workforce Council he represents consumer/employers including the SCI/D community. Big changes are coming to the PCA program. He is of available help answer questions and navigate. cdhoeh@gmail.com.

Fiscal Intermediary Transition (FI) If your current FI is Stavros or Northeast Arc you will need to fill out paperwork to complete a transition to the new single FI- Tempus Unlimited by mid December. He can provide guidance to navigate this confusing process.

Electronic Visit Verification (EVV) will be rolled out in 2022. This is a federally mandated initiative that none of us like. I'm working closely with advocacy organizations, MassHealth, and the union to develop the least disruptive plan for implementation and ways to address issues as they arise. There are lots of details but it's important for you to know that this will be done in smaller groups with at least a month's warning before individuals will need to start to use EVV. There will be many ways for you to learn about EVV and to give feedback. But if you have any questions or feedback please don't hesitate to contact Chris!

From United Spinal National

As we kick off another year of advocacy, we are asking Congress to return to last year's unfinished business - passing a full-year government funding bill for 2022. We are so close to getting increased federal funding for spinal cord injury rehabilitation and research at the SCI Model Systems for the first time in 16 years and restoring the program to its previous capacity, but we need your help to get it over the finish line by February 18, when current funding for the federal government runs out.

Over the past two decades, federal funding for SCI Model Systems has not kept pace with the SCI community's needs. There were once 18 SCI Model Systems receiving funding from the federal government. Today, there are only 14, and the amount of funding they receive has not changed since 2006. The purchasing power of these federal funds has not kept up with inflation or the growth of the SCI community.

Due to our advocacy, this past July the House of Representatives passed a funding bill for fiscal year 2022 that provided more funding for this program, including $2 million in funding specifically to increase the number of federally-funded SCI Model Systems. Last October, the Senate Appropriations Committee also provided increased funding for the SCI Model Systems program, including the additional $2 million for additional SCI Model Systems, in their version of the bill. The Senate now needs to vote on this bill and come to an agreement with the House of Representatives so that this funding increase can become law.

This request is even more urgent because the SCI Model Systems program operates on a 5-year funding cycle with a competitive application process, and a new funding cycle began on October 1. As a result, five previously-funded SCI Model Systems are no longer part of the program. If this funding is approved, the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) may award funding to the next highest-scoring applicants that did not make their initial list of 14 for the current funding cycle.

United Spinal is asking the Senate to support the increased funding for SCI Model Systems passed by the House and included by the Senate Appropriations Committee in their fiscal year 2022 appropriations bill, with the overall funding level for NIDILRR that is included in the House bill. Please contact your members of Congress and ask them to support this funding request.

Dear Wheelchair Stakeholders,

The University of Pittsburgh, in collaboration with other investigators, seeks the opinion of all stakeholders related to wheelchair service and funding. This work is part of a larger Disability and Rehabilitation Research Project funded to investigate and propose a new policy that better aligns with the needs of people who use wheelchairs as well as those who provide or pay for them. 

We are seeking broad feedback from all stakeholder groups including people who use wheelchairs, care-partners/caregivers, clinicians, suppliers, manufacturers, policymakers, and funding sources to identify the benefits and short-comings of various types of existing wheelchair policies both in the United States and around the world. 

Participation includes responding to a series of questions related to your opinion of wheelchair service and funding that includes timeliness, complexity of the process, repairs/maintenance, quality, durability, access to proper equipment.  The survey should take 5 to 10 minutes to complete.

No identifiable information will be gathered about people who complete the survey however there are some demographic questions such as country of residence, first three digits and/or letters of zip/postal code, and primary stakeholder group.  There is also a text box for additional comments.  Results will be aggregated and used for consideration in the development of a new proposed policy. 

Participation is voluntary and participants can withdraw at any time. The University of Pittsburgh’s Institutional Review Board (IRB) determined the survey does not meet the definition of "human subjects research" thus does not require full IRB review or the written or signed consent of survey respondents.

More information about the project can be found at www.crtpolicy.pitt.edu.

CLICK HERE TO ACCESS THE SURVEY LINK

(**Just in case, here is the direct link to copy/paste into browser if the above does not work correctly: https://pitt.co1.qualtrics.com/jfe/form/SV_0wI83KlzudZUxxA)

This is an opportunity for all to express their opinions regarding current wheelchair service and funding policy.

Please feel free to contact crtpolicy@pitt.edu should there be any questions or comments.  Also feel free to forward this announcement to other stakeholders you know.