The Arc’s COVID-19 Updates | June 15, 2020: We Must Not Be Forgotten

In last week’s update, we referenced our concerns about our immediate future. The past week was a somber one as we approached mid-June. We need to maintain hope in the midst of uncertainty. Together, we can advocate to have adequate PPE and testing on demand available for all our constituents, including those in family homes who utilize in-home staff.

To reinforce that we are NOT out of the woods as a state or a nation, consider this excerpt from a June 12 article in The Guardian and Kaiser Health News:

A nursing home worker in New Jersey rendezvoused with ‘the parking lot guy’ to cut a deal for gowns. A director of safety-net clinics in Florida learned basic Chinese and waited outside past midnight for a truck to arrive with tens of thousands of masks. A cardiologist in South Carolina tried his luck with ‘shady characters’ to buy ingredients to blend his own hand sanitizer. The global pandemic has ordinary health care workers going to extremes in a desperate hunt for medical supplies. Community clinics, nursing homes and independent doctors, in particular, find themselves on the fringe of the supply chain for masks, gowns, gloves and ventilators.

In this excerpt, our inclusive community is not even referenced, yet we are in the same predicament. As re-opening occurs, and with a threat of a new surge in winter, we must advocate so that our constituents, DSPs, families, and services are not forgotten. This still remains our challenge.

Recapping the Last Week

  • There were two national articles on our constituents, one by the Wall Street Journal (WSJ) and a second by the Associated Press (AP) which was distributed through a number of outlets. These followed a national NPR story from the week before.
    • The WSJ article focuses on direct support professionals’ work during the COVID-19 pandemic. As Joseph MacBeth (CEO of Natl. Alliance of Direct Support Professionals) notes, there is a need for more recognition of the role as a specific profession, as well as addressing low pay. Vignettes reflect the responsibility and the personal commitment of DSPs.
    • The AP article discusses the virus among our constituents, with a focus on larger intermediate care facilities. An Illinois facility gets the spotlight, noting unclean environments and staff not washing hands. The National Guard was called in to help.
  • Working with The Arc of the US, we outreached to other states to problem solve on existing delays with federal reimbursement to states for our services. We also continued to work on Stimulus #4.
  • We reached out to the administration and legislators with concerns over the lack of additional funding as July 1 approaches. In addition, staff contacted legislators on bills which are relevant to the COVID-19 pandemic (e.g., police, health care, and hospital training).
  • Jane Ryder, DDS Commissioner, joined Maura and Ellen to dialogue with families and others on their webinar last Thursday. DESE Senior Associate Commissioner Russell Johnston is scheduled for a webinar at the end of July.

Looking Ahead to This Week

  • The collaboration between DDS, ADDP, and The Arc on “Innovation and Technology” reconnects after a postponement during the COVID-19 crisis. We will review a draft for initial goals. The goals will be affected by the intense weeks of virtual training and technology during the pandemic.
  • We will have a space-limited trauma-informed support training for this week, held on Tuesday and Wednesday. This replaces Kerry’s session for this week. More will be offered on the topic of trauma support in the summer. We also have two sessions on the intersection of disability and race scheduled on Monday and Thursday this week. Please stay tuned for webinar topics.
  • The new “Recreation” toolkit is out. Our collaboration with DDS on social inclusion now adds the fourth toolkit to the series on Making Friendships Where You Live, Learn, Work, and Play. Please sign in here to download your free copy.

We are there for you, our community. Please stay connected with us!

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