As some of you know, my partner has a high-level cervical spinal cord injury, and like many of you, he relies on caregivers to stay independent in the community. We are so lucky that he is part of the MassHealth PCA program, which allows him to hire PCAs to assist with his care, which allows me time to be SCIboston's Advocacy Coordinator, a position I am so thankful to have had for the past year and a half.

Unfortunately, our primary PCA has had a family emergency and is taking a leave of absence. For the next month and a half, I need to take on significantly more of my partner's care, leaving less time than I'd like for advocacy. Most of you know how difficult it can be to find caregivers, let alone a full-time PCA, for a short period. This is part of the reason I strongly advocate for access to consistent, competent, and comprehensive PCA care and strong support for family caregivers. Of course, I'd love to be able to do it all – care for my partner, continue to expand the advocacy program, cultivate hobbies, etc – but unless someone has discovered how to extend the day by 6-8 hours, I can't. (Though, if you have found out how to have a 32-hour day, you have my email.) 

This could not come at a worse time, of course. So many things are changing rapidly on the federal level that impact all of us. I will do my best to ensure you have the most critical information as soon as possible. Thank you for your patience, support, and understanding during this time. And if you're interested in volunteering with the advocacy program, please reach out!

Now, let's move on to the information you're here for.

Many organizations are collecting Medicaid stories to use in their advocacy efforts to protect Medicaid. Check out the United Spinal Association’s ‘Faces of Medicaid’, and consider sharing your story! Sharing how you would be impacted by Medicaid cuts is the best way to make legislators understand what’s at stake. Please consider sharing your story with organizations working to prevent cuts to Medicaid, such as the United Spinal Association (found here) and the Disability Policy Consortium (found here). Prefer to share your story in video format? Share with the Disability Rights Education and Defense Fund here. You can also share your story directly with your legislators. Find your legislators here.

Additionally, last week, Dr. Mehmet Oz was confirmed by the Senate to lead the Centers for Medicare and Medicaid Services (CMS). He has stated that he is in favor of establishing work requirements for Medicaid, and won’t commit to opposing Medicaid cuts. Medicaid work requirements don’t work and are detrimental to people with disabilities and their caregivers. Read more or watch this short video. 

Related: Insurers and providers are teaming up to fight Medicaid cuts, Politico

Health and Human Services Restructuring:

Health and Human Services (HHS) is being restructured and the Administration for Community Living (ACL) will be dissolved, with “critical departments” being transferred to other agencies. The ACL was dedicated to supporting older adults and people with disabilities in living in the community and their caregivers. It’s still unknown which programs overseen by the ACL will continue in other HHS agencies, and which (if any) will cease to exist. We are keeping an eye on many of them including: the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) which coordinates disability and rehabilitation research through programs such as the Model Systems; the National Paralysis Resource Center; funding for Centers for Independent Living and Area Agencies on Aging, and the National Family Caregiver Support Program, among many others. On March 28th, more than 450 disability, civil rights, aging, mental health, and patient organizations sent a letter to Congress expressing concern about the HHS reorganization. Read more here and here.

ADA Guidance Rescinded:

Last month, the U.S. Department of Justice rescinded 11 guidelines that clarified ADA requirements for businesses and organizations. Half of the eliminated guidelines offered clarification related to COVID-19, including a guideline that states that Hospitals cannot “exclude all 'visitors' even where, due to a patient’s disability, the patient needs help from a family member, companion, or aide in order to equally access care”. The other guidelines had been added from 1999 to 2009, and include accessibility advice for retail, hotels and lodgings, self-serve gas stations. Read more.

Potential Voting Barriers:

On March 25th, the President signed an Executive Order (EO), called “Preserving and Protecting the Integrity of American Elections.” This EO proposes many changes to how elections work, including many changes that could impede voters with disabilities' ability to vote. Read an in-depth explanation of this EO by the American Association of People with Disabilities here.

Additional Federal Administration News:

Medicare: Congress extends Medicare telehealth flexibilities for 6 months, Health Care Dive

Education: How the Education Department Helps Students with Disabilities Get an Education, NPR

Caregivers: Immigration crackdowns disrupt caregivers. Families are paying the price., NBC and Immigration and the Direct Care Workforce, PHI

Social Security: Anxiety grows in Mass. over Social Security staff cuts, errors, long wait times, WBUR and Abruptly Eliminating Social Security Phone Services Threatens Access to Benefits, CBPP

Commonwealth Care Alliance (CCA) has been Acquired:

CCA has been acquired by Ohio-based nonprofit CareSource, due to major financial challenges. Earlier this week, the Disability Policy Consortium called for CCA’s CEO, Chris Palmieri, to resign in light of a Boston Globe article which stated that Palmieri “demanded a ‘success fee’ of more than $2 million” if he successfully brokered an acquisition of CCA. With CareSource’s acquisition of CCA, Palmieri has stepped down, along with the majority of the CCA’s board. 

Related: Commonwealth Care Alliance members left in the dark amid financial crisis, MassLive

In the Media:

Self Care: I’m Stressed About Current Events. How Can I Practice Self-care During Uncertain Times?, NAMI

Healthcare: ‘It’s infuriating’: As Mass. health care organizations struggle, some leaders make extra money, The Boston Globe and Experiences of Patients With Disabilities Can Inform How to Improve Care, Penn LDI

Natural Disasters: Disability amid disaster: People with disabilities are disproportionately impacted by natural disasters, NBC

Service Dogs: ‘My service dog has transformed my life in ways I could never have imagined’, United Spinal Association blog post

Accessibility: After Years of Advocacy, Somerville Plans to Build the City’s First Universally Accessible Playground, Cambridge Day

History: How One Man Kept Mass. from Sterilizing the Disabled, WBUR Commentary and The Iconic Civil Rights Protest You Don't Know, PBS

Documentary: Change, Not Charity: The Americans with Disabilities Act, PBS

Webinars:

April 15th:

United Spinal’s Advocacy LIVE, from 1:00-2:00 pm

Know Your Rights: Fair Housing Law and the ADA, from 1:00-2:00 pm

April 16th:

Fair Housing for Tenants with Disabilities: Understanding Reasonable Accommodations and Reasonable Modifications, from 2:00-3:30 pm

Pacific ADA Center: Your Rights as a Person with A Disability Under the ADA in Health Care, from 3:00-4:00pm, ET

April 29th:

Christopher and Dana Reeve Foundation: Regional Champions Advocacy Session, from 3:00 - 4:00 pm

April 30th: 

U.S. Access Board Meeting, from 2:00-3:30 pm

May 1st:

U.S. Access Board: Outdoor Dining, Retail, and Community Spaces, from 2:30 - 4:00 pm

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