The Arc’s COVID-19 Updates: May 11, 2020 | The Journey So Far, The Road Ahead

Only eight full weeks have passed since Governor Baker established a state of emergency on March 10. One week before his announcement, nearly 500 of us had gathered at the State House. Much has happened in a short time. Few of us realized the gravity of what would transpire in the coming weeks.

Looking Back: The Journey So Far

On March 14, Governor Baker appointed Health and Human Services Secretary Marylou Sudders to lead the command center to ensure a consistent, cross-secretariat response to the outbreak of COVID-19. The advantage of centralization is consistency and strong leadership.

Compare this response with the federal government, where we have witnessed inconsistency in strategy. One outcome of this behavior is the lack of personal protective equipment (PPE) across the nation.

A major change for all of us, and especially providers, was the emerging central role assumed by the Massachusetts Department of Public Health and local public health offices. The scope of the orders by state government has been staggering and has placed pressure upon state and municipal staff engaged in the health crisis.

In our community, the workload and challenges are extremely challenging for state and private providers who were forced to adjust quickly and often ahead of guidance. For example, by Sunday, March 15, the majority of day program providers decided to announce day programs’ closures. But the public order came over one week later on March 24. The closures not only avoided cross-contamination, but allowed multi-service providers to redirect their day PPE stock to their residences and reallocate staff.

However, the unknowns about the virus really hurt our ability to prevent the infection’s initial spread. As we learned in April, asymptomatic people were silently and unknowingly spreading the virus. As a result, the virus grew rapidly in our state and in our community residences. As we mourn the loss of 50 individuals and a handful of staff (number not confirmed at this time), the early call to a state of emergency did prevent far more deaths and contagion. Some nay-sayers argue that the shut-down was unnecessary, but we only need to look down the road to New York and imagine what could have been.

As with any crisis, we experienced confusion, with one example being mixed messages over the quarantine of essential health care staff. But the confusion subsided as the command center and state agencies responded to queries and addressed specific problems. The Department of Public Health reinforced that the CDC (Centers of Disease Control) would be the yardstick to follow and eventually messaging from local health offices and physicians fell into line with the CDC.

Much was addressed over the past eight weeks. I list below some highlights of decisions made in the initial four weeks after the emergency order:

  • Public schools were closed
  • Day programs closed, and the state committed funding to maintain their integrity and ensure outreach
  • The network of residential care received 110% commitment for the rest of the fiscal year
  • Individuals/families received flexibility for PCA to meet the loss of day programs and schools; home health was approved as a back-up service
  • MassHealth authorized quicker eligibility approval
  • DDS authorized additional family support for those in need, including food security
  • There were efforts to expand testing and make PPE more available
  • Special education guidance was revised, and a family toolbox was shared by the Deptartment of Elementary and Secondary Education (DESE)
  • On the federal level, some highlights include:
    • Flexible amendments for federal reimbursement to states for Medicaid-DDS services
    • Increase of 6% in federal reimbursement for Medicaid-DDS services
    • Stimulus checks for individuals, including direct payment to Social Security beneficiaries (took longer for those on SSI)
    • Funding for businesses through PPP forgivable loans and unemployment compensation
    • Funding for parent caregivers and additional unemployment for workers

Looking Ahead: Addressing Unmet Needs

Along with some unmet needs, we face the question of how we return. The return will be gradual as the Governor has stated. The initial return will be shaped by social distance considerations. This will have an impact on transportation and day settings.

In the long run, we will need to advocate for even smaller settings, promote person centered lives and social inclusion. We will need to rethink the value of remaining large congregate settings. Theses settings experienced a severe impact from the virus.

There are remaining unmet needs:

  • Unfilled PCA hours speak to the stopgap support needed for families or individuals who are not doing well during this 24/7 crisis
  • Family support centers can provide snapshots of the population that may be in or close to crisis.
  • There are spouses or family caregivers who are not working and need more funding beyond unemployment to maintain a stable life
  • Adult foster/family care stipends have not risen despite doubling of the day responsibilities for many home caregivers and the additional expense for others in PPE and food
  • Commitment to the day and employment providers remain unfulfilled due to regulatory details
  • Other services may need bolstering too – for example, early intervention providers which have lost 35% of their funding that is received from private insurance or managed care

We can see that in Massachusetts, getting through this together, though embraced, requires further action. Our role as an advocacy organization is to ensure that ‘together’ embraces our entire community and system of services.

Stay with us and stay together. As chapters, persons with disabilities, families, and agencies, we can advocate with our government to fulfill the shared mission to our community.

One Comment:

  1. Thank you for this excellent summary. Of the 57 who have died in DDS group homes so far, do you know if they were all elderly or had co-morbid conditions? You don’t list the care provided to the group homes as an unmet need. Do they have what they need, for the most part? There is no doubt that long-term care facilities are getting hit hardest.

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