No abstract

Self-directed care (SDC) models allow Home and Community Based Services (HCBS) consumers to direct their own care, thus supporting flexible, person-centered care. There are many benefits to the SDC model but access to resources is essential to successful outcomes. Considering the autonomy and flexibility associated with SDC, it is important to understand how SDC responded to the COVID-19 pandemic and the resources available to help manage this situation. We conducted 54 in-depth interviews with HCBS consumers, direct support workers, family caregivers, and providers to examine the impact of COVID-19 on HCBS services in Kansas. Findings illuminate how self-directed consumers carried a lot of employer responsibility, with limited resources and systemic barriers constraining self-determination and contributing to unmet care needs, stress, and burden. Policy flexibilities expanding the hiring of family members were beneficial but insufficient to address under-resourced working conditions and labor shortages that were exacerbated by the pandemic.

In the United States and in many other countries worldwide, the demand for caregivers is rising as the population ages, at the same time that the supply of family caregivers is declining. Caregiving is a holistic activity, encompassing numerous tasks and emotions, and therefore can be difficult to define and quantify. Most caregivers are women providing unpaid care to family members, although male caregivers and the formal caregiving workforce is growing. Feminist scholars on caregiving have pointed to the ways in which caregiving is devalued by many societies. Although many caregivers take pride in fulfilling this responsibility, they also often experience negative health and financial consequences. The United States has some social policies to support caregivers.

Medicaid is a joint federal/state health insurance program which includes long‐term care and covers more than 60 million people with low incomes. Although Medicaid is the largest source of healthcare funding for low‐income people, it does not cover all Americans living in poverty. Children, pregnant women, and older or disabled adults are major enrolled groups. Today, many Medicaid healthcare services are delivered through managed care, and several states are moving toward managed long‐term care. Although the Medicaid program experiences challenges and constitutes a large portion of state and federal budgets, it is generally a cost‐efficient and effective program for delivering health and long‐term care to many of the poorest people in the United States. The aging of society will result in increased Medicaid spending, particularly for long‐term care. Additionally, Medicaid is being expanded to cover millions of additional low‐income beneficiaries through the Affordable Care Act.