3.7. Main Regulatory Constraints and Challenges for Dependent Care Providers

The information included in this section is mostly derived from the findings of a short survey shared with adult dependent care providers in Cabell, Kanawha and Preston and research from AARP West Virginia. The average response rate was 13 percent. This low response rate can be partially attributed to the COVID-19 pandemic, which forced the interview process to come to a halt beginning in early March 2020, losing over a month of potential work. For these reasons, the results of the survey are not representative of all providers and include only the perspectives of those who are based within or nearby the three-county area [135], as well as those who voluntarily participated in the interview.

Adult dependent care providers report major difficulties in attracting and retaining workers, mainly due to low wages, lack of benefits and incentives, and the emotional and physical demands of the work [136]. For instance, personal care aides in West Virginia make on average $21,400 per year [137]. Additionally, West Virginia is one of only eight states where home care workers are paid less than retail and food service workers [138]. For these reasons, adult dependent care businesses are in constant competition for workers with restaurants and nearby hospitals, which can offer more money for what many consider to be less demanding work [139].

Additionally, adult dependent care businesses report difficulties in finding enough prospective workers who are able to pass a background check or drug test. Providers also cite lack of transportation for employees as a significant barrier, not only to get to work but also to the homes of clients who often require or prefer in-home care [140]. For providers who are able to offer employer-sponsored health insurance to their employees, recent increases in premiums have hindered their ability to pay for this benefit, and, as a result, they end up passing along those costs to their employees. For instance, a provider based in Barboursville, West Virginia stated that health insurance premiums went from $490 for full-time employees to $1,710. As a consequence, the facility went from covering 75 percent of the cost to 50 percent.

Navigating the complexities of different eligibility criteria for federal and state benefits for elderly and disabled adults and fulfilling reporting requirements (e.g., filling and storing paperwork) are also among the main challenges dependent care providers face in the delivery of services. Record keeping and collection of data are reported to be time consuming, overwhelming and burdensome for dependent care workers (data weariness takes a toll on employees). For instance, a provider from Preston County revealed that a tiny clerical error in a report cost them $23,000 between the pay back and penalty. Additionally, such errors go on the books as fraud (other agencies have reportedly paid between $70,000 and 100,000). For these reasons, they have a team of workers that spend three full days twice a month painstakingly reviewing paperwork to make sure that all the information is correct. Additionally, some reporting requirements do not use current technology, like electronic databases/verification (i.e., providers need to print and mail documents to regulatory agencies). Providers report that changing regulations to allow for electronic submission would make compliance easier.

Furthermore, reimbursement rates set by the state for in-home care services have not changed since 2009. According to a provider in Preston County, reimbursement rates for in-home care services are currently between $13 to $15 per hour when they should be at least $18 per hour to cover the true cost of providing such services [141].

Some dependent care providers cite a worldview that distrusts organized or formal care as a barrier for in-need clients. Because of West Virginia’s rural and family-centered culture, many families believe that it is the role of the adult children to care for their elderly parent. For this reason, delegating that responsibility, even to a trained professional, can be embarrassing and even seen as a personal failure, despite the benefits of professional caregiving (see Benefits of ADS under Section 4.7). Additionally, some providers reported that several of their clients have low educational attainment and low health literacy, which often makes it difficult for them to understand the services they need and appropriately follow directions, occasioning in worse health outcomes and more expensive care.

Furthermore, approximately 25 percent of all family caregivers are now millennials [142]. This statistic is partially due to young military service members who have sustained traumatic brain injuries along with grandchildren who had been raised by grandparents and now find themselves in the role of caregivers. According to AARP West Virginia, the Generation Y is generally unaware of many of the services available in the state. Additionally, many of the services currently offered are for older adults, those 60 years and older. 

Home Care and Select Federal and State Programs [143]

As outlined in Section 4.7, many clients favor in-home care services over institutional living, which allow them to remain in their communities and oftentimes live with their family members. Nevertheless, according to a 2017 Home Care Market Assessment, West Virginia’s average spending on home and community-based services (HCBS) is marginally lower than the U.S. average, which indicates a preference for institutional-based care [144]. Additionally, West Virginia is one of only two states that still require a certificate of need prior to opening an in-home personal care services business, which creates a high regulatory barrier for market entry [145]. The state also faces a substantial shortage of home caregivers, with one home caregiver for every 11.19 home care clients [146]. More details of opportunities for the state on the home care market can be found in a footnote [147].

The Medicaid Aged and Disabled Waiver (ADW) program is an alternative to long-term care that offers services that enable an individual (older adults and certain adults with disabilities) to remain at home or return home rather than receiving nursing home care [148]. The program is state and federally funded and allows participants to receive up to 155 hours per month of home care. Providers report that the waitlist for the ADW program can take up to a year and those who make more than $24,000 per year are ineligible. It is important to note that the Medicaid ADW program is only for individuals who qualify for nursing home care. Program participants must have several deficits in activities of daily living that prevent them from caring for themselves. In the early stages of a dementia, an individual who would greatly benefit from an adult day program with social interactions and activities to stimulate their cognitive abilities, would not quality for the in-home waiver program. Thus, the state can benefit from creating an additional waiver program that covers adult day services [149]. 

The Lighthouse program was launched in 2007 with the goal of meeting a growing need for in-home care services in the state [150]. The program is available in all 55 counties and designed to aid seniors (60 years old and older) who have functional needs [151] in their homes, and whose income and financial assets make them ineligible for Medicaid services [152]. The program is entirely funded by the state. Eligible individuals may receive up to 60 hours of service per month, based on resources available and a client assessment [153]. Providers who participated in the short survey report that because of the of lack of caregivers, the program has a long waitlist, in large part, due to the high number of family members who are employed through a service provider and unwilling to work with other clients in the program.

Section 4 includes proposed solutions and suggestions on how some of the issues identified in this white paper can be addressed as it relates to child care businesses and adult day programs.