Family Caregivers as Needed Partners: Recognizing Their Role in Medicaid Managed Long‐Term Services and Supports

Abstract

Adults with intellectual and/or developmental disabilities (IDD) in the United States are supported by both formal Medicaid‐funded long‐term services and supports and family caregivers. Lack of alternative housing options and wait lists for long‐term services and supports means the role of the family caregiver is and will continue be critical. Rising long‐term services and supports costs combined with goals to improve care coordination and access to services are driving more states to change the design of their long‐term services and supports systems to a Medicaid‐Managed Long‐Term Services and Supports (MLTSS) approach. Best practices for implementing MLTSS for individuals with IDD include acknowledging the family caregiver role. The current study's aim is to understand how family caregivers and their roles are recognized in MLTSS for adults with IDD in Kansas. Kansas was selected given their unique approach to MLTSS for adults with IDD, referred to as KanCare. In‐depth semi‐structured telephone interviews were completed with 31 stakeholders in Kansas, including statewide/regional representatives (N = 13), service coordination providers (N = 7), and family caregivers (N = 11). Additional family support services were available in KanCare, but families had difficulty accessing them. No formal processes were reported for assessing the needs of family caregivers in KanCare and families found communications with managed care entities challenging. Families reported difficulties with taking on responsibility of managing in‐home supports and there were concerns about being paid to provide care as a guardian. Family caregivers play a critical role in MLTSS, including assisting with care coordination and access to services. However, their role was not formally acknowledged in KanCare. Future research, practice, and policy efforts should focus on promoting family caregiver assessments and identifying best practices for supporting family caregivers in MLTSS.

Prioritizing barriers and solutions to improve employment for persons with developmental disabilities

“…Persons with developmental disabilities represent a heterogeneous population that makes their identification and recruitment in research difficult [45][46][47][48]. To enhance our chance of having a stronger voice from this stakeholder group we decided to include their families and caregivers as proxies as they are the key source of support and are aware of the daily challenges of this population group [49]. In addition, there were participants wearing more than one hat that contributed information on behalf of their family members (N ¼ 2).…”

Beyond the institution versus home care dichotomy: Lessons from a feeding‐tube medical home

“…This care giving model prioritizes economic efficiency over patient care (Foster et al., 2019), marked by an ever‐widening reliance on unpaid family caregivers to provide services previously restricted to hospital settings and licensed medical personnel (Williamson et al., 2018). In this way, hospitalization extends into the family home as a hybridized 'medical home', resulting in neo‐liberalized medical services that are explicitly emotional and insidious while being rendered benign.…”

“…I argue that this creates a “mother‐expert” who has been trained in specific medical tasks for systemic economic efficiencies to overcome direct care labor shortages (Cataldo et al., 2017). In practice, this mother‐expert (or professional mother) becomes a member of the “medical care team”, replacing other licensed medical personnel (Williamson et al., 2018). As a result, mother‐caregivers are placed in untenable situations of caring for children, often without the necessary support, training, and resources, within a sociocultural framework of ideology that values self‐sacrifice and obligation (Cataldo et al., 2017; Christopher, 2013; Douglas, 2016; Elliott et al., 2015; Henderson et al., 2016).…”

“…The "medical home" resides in this uneven landscape, reflecting a liminal space where public and private are comingled and gendered divisions of labor are entrenched (Foster et al, 2019;Lewiecki-Wilson and Cellio, 2011;McRuer, 2016;Mitchell, 2015). This care giving model prioritizes economic efficiency over patient care (Foster et al, 2019), marked by an ever-widening reliance on unpaid family caregivers to provide services previously restricted to hospital settings and licensed medical personnel (Williamson et al, 2018). In this way, hospitalization extends into the family home as a hybridized 'medical home', resulting in neo-liberalized medical services that are explicitly emotional and insidious while being rendered benign.…”