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When the Covid-19 pandemic hit, there were approximately 12 million people receiving long term services and supports – mostly older Americans, and about 4 million people receiving home and community-based services (HCBS).
This substantial and diverse population faced unique challenges during the pandemic. Because many HCBS are delivered in the home, the public health directive to social distance and limit social contact was particularly hard to fulfill for recipients of HCBS and providers alike. One consequence was that providers exited the workforce in droves, leading to severe worker shortages. Recipients were often at a loss as to how to get the services they needed while staying safe.
In an effort to address these challenges, the Federal government implemented Appendix K, which enables states to make necessary adjustments to their approved waivers to ensure continuity of services and preserve the health and welfare of individuals impacted by emergencies or natural disasters.
Towards the beginning of the Covid pandemic, states began implementing Appendix K, although the services it enabled were different from state to state. Appendix K allowed people to be more involved in directing their own services through enrollment in self-direction programs.
Two key benefits of self-direction include being able to recruit, hire, supervise and direct workers who provide supports, including the ability to hire family members, and increased budget authority where the participant has more control over how their money is spent when it comes to HCBS.
Bevin Croft, director of behavioral health at Human Services Research Institute, says self-direction is an important way to deliver care because it is also morally right. She says the validation that comes with self-direction is important. “You’re authentically ensuring a person’s autonomy through self-directed care,” she said. “It’s the quintessential example of a person-centered practice.”
Croft has studied the connection between self-direction and mental health recovery in the population of HCBS consumers who use behavioral health services. She said less is known about this population than other people with disabilities in terms of self-direction. She said better peer support and increased levels of agency were two benefits that people who self-direct experience. “Having some power, alongside support and coaching, facilitates all kinds of cool activity around functional things, like buying a mattress to get a good night’s sleep, buying a bus ticket to see family, or buying a computer to start a business. All of these things were ways to feel worthy of being in the world,” Croft said.
Having access to the expanded self-direction offerings made possible by Appendix K allowed some people to focus on aspects of their lives they may not have had the ability to focus on before, including employment.
Nicole LeBlanc, a self-advocate adviser at TASH, worries about what will happen when Appendix K funds are no longer in use, especially in regard to employment. “The world of work is changing, and many of the jobs people with disabilities did decades ago are being automated,” she said. Keeping practices like flexible work arrangements can help increase employment for more people with certain disabilities and fill gaps in the workforce as a whole. “We need to get more creative, customer-focused job development and focus on designing the job for the person,” she said.
“Self-direction is person-centered, and we need to move the system to being truly person-centered, not systems-centered,” said LeBlanc. She cites less tangible benefits of self-direction that could have long-term benefits that extend beyond the public health emergency posed by Covid-19, which will be declared over by the Federal government on May 11. “Self-direction also goes back to the dignity of risk. Dignity of risk in the era of Covid-19 presents opportunities, like encouraging people to move into an apartment with a peer, instead of a group home, for example.”
For more information on what to expect after the public health emergency is declared over on May 11, please see:
U.S. Department of Health & Human Services, Fact Sheet: COVID-19 Public Health Emergency Transition Roadmap.
Kaiser Family Foundation, What Happens When COVID-19 Emergency Declarations End? Implications for Coverage, Costs, and Access
Kaiser Family Foundation, Medicare and Telehealth: Coverage and Use During the COVID-19 Pandemic and Options for the Future