COVID-19: Leo’s Letter: Beyond “Editing” Lives and Maintaining Hope

It’s just weeks before our Independence Day holiday, and three months have passed since the Governor Baker’s emergency order. One takeaway I have from the past week is that we need to maintain hope and presence of mind.

The changes we have experienced have gone beyond “editing” our lives. It is clear that our constituents and our services require a customized approach during the “re-opening.” By contrast, restaurants are not necessary for their patrons, no matter how desired.  During the pandemic’s height, we know these things:

  • Families who were separated share bonds beyond the typical nature of parent/sibling to child/sibling.
  • Families who were isolated with their loved ones assumed responsibilities that often go beyond realistic demands.
  • Essential Direct Support Professionals (DSP) accepted work schedules and routines which surpassed typical expectations (as did health care professionals).

We need accommodations in policy and funding during re-opening that reflect these and other realities (including the lack of PPE, on-demand testing, etc.) of our constituency. We are worthy of this consideration by the Commonwealth and our nation’s leaders.

Grassroots advocacy together and responsive actions from our leaders will increase the hope we all need for the months and years ahead.


  1. Thank You!!
    It’s difficult to imagine what life going forward will be like for our persons with disabilities to keep them safe! We have a 38 year old son with autism & every single program, or job has been cancelled to date. Expectations will be high for these folks as they return to their day, or work programs & many of them won’t be able to adhere to the regulations & standards for safety that are more than likely going to be set forth….So…what do we do??? Being creative goes beyond the scope of anything we’ve ever seen…staggering day programs………..transportation, etc. – all need to be considered in the safest, smoothest way possible………this will take time, but we need to do ir right & it’s worth the wait!!!

    I’m enjoying the weekly ZOOM reports…& appreciate all your hard work, support & dedication.
    Barbara Veal

  2. Group Homes and Day Habs must be held to the same infection control standards and inspections as nursing homes! The same intimate care is provided so why aren’t the requirements the same? Human Services agencies hate to equate their services with nursing homes, but the reality is that it’s the same type of care. Providers must be held to strict infection control standards and should undergo unannounced inspections to ensure compliance. The lives of our individuals and the staff who care for them depend on it!

    Thank you for being such a strong advocacy group! PLEASE keep pushing for what is best for our special people.

  3. We need to see our son now! We’ve waited long enough! We’ve tested negative for corona virus and live in our own apartment. Everyone’s situation is different and should be taken on a case by case basis. Paul is looking depressed lately when we see him on the portal. We are very depressed ourselves going from seeing him 3 times a week to not seeing him in over 3 months. So many things are opening up but we still don’t get to see our son. Our hearts are broken!

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