June 2020 Update
June 2020
The Covid 19 pandemic has forced the disability rights community to focus on the myriad of ways people with disabilities face life-threatening discrimination and have unique needs that require government action. The chapter is collaborating with a multitude of disability rights organizations to address the immediate issues while continuing to work on pre-existing problems.
Collaboration with United Spinal
The chapter has developed a close working relationship with the talented advocacy staff at the national office of United Spinal. Chris Hoeh was asked to share an overview of our work as a featured contributor in the first of three United Spinal Virtual Advocacy Events. There’s excellent information about how to be an effective advocate and the current work being done related to people with disabilities at a federal level. You can view the entire webinar here (Chris speaks about the chapter and introduce Sen. Warren’s health care staff person at 1:05:07).
Statement of United Spinal Association in Response to the George Floyd Killing
The United Spinal Association statement begins: “United Spinal Association abhors and decries the murder of George Floyd and other black Americans subjected to systemic racism by law enforcement.”
Critical Care Standards
The Chapter joined a multitude of healthcare groups and disability rights organizations to object to the administration’s initial standards of care for allocating medical resources during the pandemic because they discriminated against people with disabilities. In response to overwhelming outcry from advocates the standards of care were changed in significant ways to meet these demands. There remain areas of concern and organizations continue to discuss further action.
PCA and Home and Community Based Services (HCBS)
The Covid-19 pandemic makes clear the value of Home and Community-Based Services (HCBS) including personal care attendant (PCA) services delivered in persons’ homes compared to nursing homes, where people needing long-term care are being tragically decimated as the virus sweeps through these congregate sites. On April 26 a Boston Globe commentary, by Kevin Mahoney, a Boston College professor clearly describes the benefits of these programs. The chapter has been advocating for these services in the state and federal levels.
Massachusetts
Chris Hoeh, as a member of the PCA Workforce Council, participates in regular meetings with MassHealth about new initiatives and to provide feedback about the needs of consumers and PCAs. Many positive actions have been taken including: lifting the overtime cap, expanding telehealth, extending re-evaluations. These regulations continue to evolve. The most up-to-date information can be found here. However it can be difficult to navigate the new regulations. Please do not hesitate to contact Chris Hoeh if you have questions or experience obstacles.
Advocates continue to push to allow spouses and parents/guardians to be paid as PCAs. The state has created a workaround that allows consumers to use home health aid agencies who can hire a family member. This is not working well and organizations are seeking changes on the state and federal level.
The shortage of PPE for consumers and PCAs continues to put both groups at risk. The state has not adequately address this problem. Consumers can request supplies by contacting the the PCA union, SEIU 1199 .
Federal Advocacy
The state cannot take on the ongoing healthcare costs of the pandemic without federal assistance. Chris Hoeh collaborated with disability rights organizations and Sen. Warren staff on a letter to congressional leadership, from Sen. Warren and other legislators, that advocates prioritizing the needs of people with disabilities in the next stimulus legislation. Sixteen of these organizations signed a letter asking for the removal of the federal restriction on parents/guardians and spouses being paid as PCAs.
Accessible MA Act (Accessible and Adaptable Housing and Workplaces Legislation)
The pandemic makes even more clear that people with disabilities need accessible housing and workplaces. Covid 19 has disrupted the normal state legislative process. Usually all legislation is resolved by the end of July. We are hopeful that the session will be extended so this legislation can finally be approved and signed by the governor. The coordinating committee advocating for the legislation is using this time to contact media organizations to report on the need to pass this bill. The group wrote an excellent commentary for CommonWealth Magazines weekly newsletter that connects the crisis with the need for the services and accessible housing which allows people with disabilities to live independently rather than in nursing homes.
PT – 1 (Mass Health Transportation Program)
Negotiations with the state to radically improve the transportation for MassHealth members is currently on hold but not forgotten.
Wheelchairs and Durable Medical Equipment
The DPC and BCIL are organizing a grassroots campaign to improve consumer experience with Durable Medical Equipment (DME). DME is any equipment used in daily life and independence, including wheelchairs, walkers, hospital beds, commodes, shower chairs, nebulizers, absorbency products, etc. They are interviewing people who use DME to gain a better understanding of the issues we encounter. The interview will take between 30 minutes and an hour, and can happen by video call or over the phone. Please reach out to Harry Weissman, to schedule an interview: email hweissman@dpcma.org or call 617-977-4084.
Please contact chapter advocacy representative, Chris Hoeh, if you have any feedback, questions, or need help advocating.