Memorial Day began as a holiday in 1868 to honor Civil War veterans who lost their lives in service. Perhaps this quote best captures that sensibility: “What I can do for my country, I am willing to do.” In my experience, we also honor the memory of family and friends who have passed away. This weekend, we visited two cemeteries acknowledging family members and veterans.
We remembered those who have passed away during this pandemic, some of whom one or more of us personally knew. A WBUR story last week shared the isolation in the hospital experienced by Mary Henderson as she passed away. Persons with disabilities should be granted exemptions in regard to visitors. Our colleagues at DLC presented that point as did Mary’s family. Mary had been supported at The Arc of South Norfolk, and she was born into a family that never skipped a beat in regard to her personhood and role in the community. Her brother, Dick, is the past chair of The Arc of South Norfolk.
- Scheduling Notice
- DDS Data Sharing
- State and National Trends
- National Priorities at The Arc
- 2020 Census Updates
- Getting through the COVID-19 Pandemic
This week’s Leo Live will be held on Wednesday, not on Memorial Day. Brittiany McDermott will again join Leo for a conversation on the present and future impact of the COVID-19 on the lives of individuals and staff at a community residence. Register here.
DDS Data Sharing
Another key issue is weekly COVID-19 data sharing of home settings funded by the Department of Developmental Services (DDS). We are not sure why there is hesitation to share this information more often. We realize it’s not 100% accurate since the data flows from over 2,400 sources, but we need it all the same to understand the impact of the crisis.
There is one set of data which we applaud: namely, the increase in constituents and staff tested for COVID-19 due to mobile testing and pop-up sites. Realizing that mobile testing efforts did not capture enough staff (lack of notice, differing staff schedules), DDS introduced pop-up sites which are announced in advance at locations across the state. DDS and the Commonwealth should be commended on the expansion of testing. Next, we hope that a data dashboard will be shared more often publicly. DDS has a listing of resources including visual fact sheets to help individuals with disabilities through the testing process here.
State and National Trends
As we advocate for data and more PPE (personal protective equipment), I was struck by two Globe articles: one focused on businesses having trouble getting workers back to their jobs both due to the fear of infection and the extra dollars Congress provided in unemployment compensation. This is and continues to be a fear in our field since DDS’ community homes were under-staffed at the start of the crisis.
The other article notes that our present testing and response system is not fast enough to keep up with the crisis. Although The Arc may support mandatory staff testing in concept, we recognize that DDS testing numbers are already ahead of that of the general population (15,000 tested since April 10 alone). Staff refusals for testing were partly due to the lack of testing options: the addition of pop-up sites have increased the numbers. Secondly, keep in mind that test results take three days (hopefully only that long) to arrive. As Harvard epidemiology professor Michael Mina states, our present situation is “like a dog chasing its tail.” An asymptomatic individual or staff person at a community residence may have the virus for days before his/her test is confirmed.
Some weeks ago, Bill Gates noted at CNN that the science exists for home testing through relatively inexpensive swabs. Widescale distribution of the swab set-ups while increasing test result capabilities could effectively reduce the spread of the virus. Unfortunately, the FDA recently halted a Seattle based pilot program taking this approach (funded by Gates). It’s a confusing delay in our national approach to the virus.
As we remind you to check our COVID-19 webpage regularly, we also want to direct you to a new letter from DDS Commissioner Jane Ryder. She notes in her letter: “I have heard wonderful stories of families finding new ways to connect remotely and staff going above and beyond during this public health crisis. We have seen big and small acts of creativity, commitment, and compassion in our community every day.” You can read her entire letter here and connect to more DDS information.
National Priorities at The Arc
It’s no time to slow down in our advocacy as we look ahead to our state budget for 2021 and the resources we require to address the COVID-19 virus. Ellen Taverna reviewed The Arc’s federal priorities on her webinar:
- Dedicated funding for Medicaid home and community-based services (HCBS). These funds are necessary to serve people with disabilities in their homes and communities and will provide better wages and support for the DSP workforce.
- Personal protective equipment (PPE) for direct support professionals. This is urgently needed to protect the health and safety of this critical workforce. DSPs must be designated as essential workers so that they can get access to the PPE and medical supplies they need.
- Paid leave for all caregivers. As more people with disabilities lose their usual sources of care, family caregivers are scrambling and need access to paid leave and sick days to help their loved ones. Congress should include all family caregivers in the emergency paid leave provisions.
- Economic impact payments for all people with disabilities. Tell Congress to make sure that stimulus payments are available to everyone, including adults with disabilities who are claimed as dependents
These tools can be used in the ongoing nationwide #WeAreEssential Campaign:
- The Arc’s Story Collection Tool. Important to collect & share stories now to send to Congress.
- Please use The Arc action alert to call, email and tweet your Senators!
2020 Census Update
On May 22, the Census Bureau announced that they will restart operations on May 25, in 10 additional states including Massachusetts. The Census Bureau is still hiring and encourage folks to apply!
This past Friday, Ellen Taverna had Carly Bari of the Census as a guest providing an update. Massachusetts is ranked 20th in census self-response and we hope to increase that as census workers head out to follow up. On the webinar, Carli mentioned The Arc’s active participation in the census. For more census information, visit arcmass.org/census
Getting through the COVID-19 Pandemic
This past Thursday, Dr. Kerry Magro was a guest on Maura Sullivan’s weekly webinar. He has a doctorate in education and is a best-selling author, a popular speaker, and HBO consultant. Kerry shared some tips on how to get through this crisis.
When Kerry was young, his parents were told he wouldn’t graduate high school due to his autism, but now he has a PhD in Education in addition to his busy professional life. Kerry gave some helpful tips on getting through the next few months and we will share two in this update:
- Don’t let the changes in routine throw you off. He suggests virtual daily check-ins with family or friends to avoid feeling isolated.
- Stay on top of your finances. The crisis has resulted in the loss of some or all income for many, and in some cases, increased home expenses. Evaluate your buying habits – what are expenses you can put off (e.g., regular trips to the coffee shop, ordering items online, etc.)
Kerry advocates with state and federal legislators so persons with disabilities and caregivers are not forgotten during the COVID-19 crisis.
On Kerry Mahoney’s webinar, Jonathan and Dianne Huggon discussed a day in the life. We paraphrase a short excerpt during which Dianne shares Jonathan’s transition due to the virus. “Overnight, our life changed.” Johnathan had to leave behind a busy weekly schedule, which had included 2 days per week delivering mail at city hall office; 4 days per week traveling in SE Mass and RI to work on his photography, shopping one or two days a week, and a weekly music lesson.
Once the order to stay home was announced, they had to think through what would be possible. To paraphrase Dianne: “I’m not sure how Johnathan processed the change initially, but his look communicated ‘what do you mean I can’t go out?’” Like any young man, he also didn’t want to hang out with mom all the time. Dianne presented the situation to him and that decisions needed to be made. She and her husband reviewed the schedule; they knew that they had to cut back on the number of people in and out of the house for everyone’s safety.
In the end, the outcome was to keep photography as the priority since that was Jonathan’s passion. Photography allowed him to interact with only one additional person, his coach. It also was an activity where social distance could be maintained with other people. If you visit the webinar video, you can see a photo of Jonathan and his coach with and without masks – before and during the COVID-19 pandemic.