Caregivers and family of those with disabilities are worried the Maryland Department of Health may be about to end a provision early that gives them more flexibility in how services are billed for and delivered during the coronavirus pandemic.
Known as Appendix K, the temporary rule allows family members to act as paid support staff; enables providers to conduct services virtually; permits services inside a person’s home; and authorizes easier billing standards for remote and in-person care.
No final decision has been made yet to end Appendix K, said Charles Gischlar, a state health department spokesman. Discussions are ongoing between the Maryland Developmental Disabilities Coalition and State Health Secretary Dennis R. Schrader, he said.
“Secretary Schrader proactively reached out to and the Maryland Department of Health is now meeting regularly with the Maryland Developmental Disabilities Coalition to determine a mutually agreeable post-COVID-19 transition pathway so that our focus stays on the health and well being of Marylanders with developmental disabilities,” Gischlar said in an email.
As many as 25,000 Marylanders with intellectual or developmental disabilities rely on state services, according to state figures. And thousands of them have relied on Appendix K during the public health crisis, according to the Maryland Association of Community Services.
Service providers for people with intellectual and development disabilities in the state said a premature end to Appendix K would devastate the community’s ability to receive care. They said the state had indicated it could eliminate the rule as early as Aug. 15, ahead of an earlier indication from health officials that the provision would run six months after the end of the federal Public Health Emergency.
On Monday, the federal government renewed the Public Health Emergency Declaration for COVID-19.
The health department would not confirm that it considered an Aug. 15 end date, and Gischlar declined to discuss it.
“Marylanders with disabilities are and will always receive the services they need, which remains our top priority,” he said.
But the proposal alarmed those who serve people with disabilities and their families.
“A lot of people won’t get served if they get rid of Appendix K,” said David Greenberg, president and CEO of The League for People with Disabilities in Baltimore. “Nobody was thinking this was going to end right away or we would’ve been hiring up since March.”
Greenberg and others said the pandemic has decimated much of the workforce that supports people with disabilities in residential care settings, at day programs and at home. Many were laid off in the early months of the public health crisis when families kept their loved ones isolated and away from in-person support services and day programs.
Now, as the Maryland economy begins to rebound and companies are looking for more staff, The League and other providers for the disability community are competing with businesses that may pay better or offer more flexible hours and remote work opportunities, Greenberg said.
“There’s not enough staff to accommodate all the people to come back,” Greenberg said.
Jackie Stevens, chief operating officer at Penn-Mar Human Services, which provides residential and day support services to Marylanders, said staff levels in certain areas are down 40% to 50%. Appendix K has been crucial, she said, in expanding what the Centers for Medicare & Medicaid Services typically considers billable and giving people the care they need at home.
“As a provider it creates business ramifications for us as we move forward,” Stevens said. “The crisis that exists as a result of the last year-and-a-half, that doesn’t go away Aug. 15.”
Many people with intellectual or developmental disabilities are more vulnerable to developing severe illness as a result of the coronavirus, and those with underlying health problems such as weakened immune systems, heart conditions and lung disease could be at even higher risk, according to guidance from the U.S. Centers for Disease Control and Prevention. Those with disabilities also are more at risk for developing underlying health conditions than the general population, the CDC reports.
People with Down syndrome, in particular, are more at risk of contracting serious illness as a result of COVID-19, according to the CDC. It is one of a handful of conditions the agency identifies as a clear risk factor.
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As a result, much of Maryland’s disability community lost every social connection outside their homes as the pandemic forced them to isolate themselves with parents and relatives acting as full-time caregivers. Some adapted to remote learning and working, while others continued going to work and school in spite of the mounting risks to their health.
Susan Hartung, a Montgomery County teacher and mother to two adult children with developmental disabilities, said her family has benefited from the flexibility afforded by Appendix K.
Her kids, Emily and Warren, live in a residential care facility and have work and volunteer programs they usually attend during the day. But when the pandemic struck, they had to stay home, Hartung said, given the risks posed by COVID-19.
Appendix K allowed them to receive programming where they live, she said.
“It’s really just not safe because you can’t really mandate staff or clients to be vaccinated,” Hartung said. “If [Appendix K] disappears, for parents that are working or have really vulnerable children, that can be disastrous.”
Hartung also said she’s concerned about the circulation of the new delta variant, which the CDC has deemed a “concern” for its contagiousness and its ability to sicken more people.
“These are individuals that don’t understand social distancing, don’t tolerate wearing a mask, and don’t understand the rules of staying safe during this,” she said. “Dangerous: That’s just the only word I can think of to describe this.”