Disabilities and the Family: Where are the Marriage, Couple, and Family Therapists?

The majority of adults and children with disabilities receive support for their daily living from a family caregiver. As such, families are and will continue to be the largest providers of care and support for individuals with disabilities in the United States (Larson et al., 2015). Because family members play an integral role in meeting the needs of individuals with disabilities, promoting family resilience has strong implications for health and wellbeing of all family members.

Despite the widespread acknowledgement of the importance of families in quality of life for people with disabilities, there is a concerning lack of guidance to define and identify best practices and policy for effectively supporting families (Burke, Lulinski, Jones, & Gallus, 2018; Hewitt, Agosta, Heller, Williams, & Reinke, 2013).

The practice of marriage and family therapy (MFT) inherently assumes the interdependence between personal and relational functioning as influenced by contextual factors. This clinical framework suggests M/CFTs are ideally trained to meet the unique needs of families of people with disabilities, Yet, the majority of MFT training curricula do not routinely address clinical training or supervision related to disabilities. As a result, many M/CFTs consider therapy with families impacted by disabilities as outside their scope of practice. Systemically informed professionals have an opportunity to play a key role in bridging the gap to address the growing need for accessible mental health services that support individuals with disabilities and their families by managing risks and enhancing resilience.

Individual and relational outcomes

While some families and relationships of individuals with disabilities develop strong coping strategies to function quite well (Bayat, 2007), research also illustrates that unique challenges can negatively affect the health and wellbeing of many families (Brown, Anand, Alan-Fung, Isaacs, & Baum, 2003; Greenberg, Seltzer, & Greenley 1993; Jokinen & Brown, 2011). Due to the added caregiving responsibilities that are necessary for individuals with disabilities, members of families affected by disabilities have an increased prevalence of physical, psychological, and relational distress (Brown, Whiting, Kahumoku-Fessler, Banford Witting, & Jensen, 2020; Pilapil, Coletti, Rabey, & DeLaet, 2017). Parents, spouses, and siblings of children with disabilities experience higher rates of mental health concerns such as anxiety and depression when compared to families of typically developing children (Marquis, McGrail, & Hayes, 2020). Caregivers in particular have higher rates of health problems and report a variety of physical symptoms like migraines, heart conditions, and sleep problems (Lee, Park, Matthews, & Hsieh 2017). These mental and physical health effects lead to reports of decreased quality of life and general wellbeing (Arora, Goodall, Viney, Einfeld, & the MHYPEDD team, 2020; Pilapil et al., 2017).

In addition to the physical and psychological outcomes of individual family members, families affected by disabilities are also affected by greater relational concerns. Parents of children with developmental disabilities face difficult and unique challenges to meet the needs of a child with a disability, which leads to greater marital and relational strain. Previous reports that suggested nearly 80% divorce rates among parents of children with disabilities have been shown to be misleading, as there are differences according to family size and child development stage. However, there is still a disproportionately high divorce rate among parents of children with a disability compared to parents of typically developing children when number of children was comparable (Namkung et al., 2015).

While parenting and co-parenting a child with a disability poses significant challenges, couples in which one or both partners has a disability also face unique relational difficulties. A growing area of clinical interest is dedicated to exploring couple therapy approaches that are appropriate for addressing the unique needs of adults with disabilities. Romantic partners of individuals with a disability experience similar trends in mental and physical health decline as parents. For example, neurotypical partners of people with Autism Spectrum Disorder (ASD) experience physical health decline, negative self-image, and a profound loss of hope (Bostock-Ling, Cumming, & Bundy 2012; Lewis, 2017). Couple therapy approaches should address discrepancies in relationship expectations for adults with a disability and their romantic partners, as inconsistent relational expectations are associated with unmet emotional needs and poor relationship satisfaction (Parker & Mosley, In Press; Strunz et al., 2017).

Social support

Many of the adverse physical, mental, and relational health effects described by family members of individuals with disabilities are compounded by a lack of social support. Families often explain that there is a notable deficit in available social support, which they generally attribute to two main reasons: 1) family members’ lack of free time to socialize with friends and family due to the added caregiving responsibilities, or 2) societal stigma associated with disabilities that may be attributed to personal shame and embarrassment of family members or the disapproval and ostracization by others (Recio, Molero, Garcia-Ael, & Perez-Garin, 2020). Unsurprisingly, caregivers of individuals with intellectual and developmental disabilities were disproportionately affected by the social distancing measures implemented during the recent COVID-19 pandemic. Not only were caregivers unable to access their already strained social supports, professional support services were also significantly reduced due to school and professional clinic closures (Chung, 2020; Willner et al., 2020). An unexpected outcome of the pandemic has been a surge in research that demonstrates promising findings in the evaluation of online platforms (e.g., Facebook) as a means of social support for caregivers. Clinicians working with families affected by disabilities can support caregivers by connecting them with appropriate online platforms to increase social support, which acts as a protective factor against the harmful effects of caregiver stress and burnout.

Although having a family member with a disability may result in greater demands on family resources, the presence of family coping strategies, social support, and community resources can effectively reduce the stress associated with having a loved one with a disability (Asberg, Vogel, & Bowers, 2007). Research indicates that access to social support and interventions that promote adaptation to meet everyday challenges helps families mitigate many of the negative effects often noted as outcomes in family research (Caldwell, Jones, Gallus, & Henry, 2018; Jones & Gallus, 2016; McConnell & Savage, 2015).

Despite the additional obstacles and challenges, parents also describe positive outcomes, such as patience, compassion, and family cohesion amidst the overwhelming struggles of caring for a child with a disability (Sim, Cordier, Vaz, & Falkmer, 2019). Greater resiliency is noted among families that are able to ascribe a positive meaning to adversity or seek the benefits of caring for a family member with a disability. It is therefore essential for M/CFTs to consider ways to identify and build on families’ strengths and inherent competence to overcome the challenges they face.

Greater resiliency is noted among families that are able to ascribe a positive meaning to adversity or seek the benefits of caring for a family member with a disability.

Contextual influences and intersectionality

The conceptualization of intersectionality (Crenshaw, 1989) enables a complex understanding of the ways in which race, gender, class, sexuality, ability and other dimensions of social, cultural, and economic determinants intersect to shape daily life and social structures. Disabilities are an important, albeit often overlooked, representation of diversity and contextual considerations. Varied abilities and needs among individuals with disabilities are associated with differences in the experiences and challenges families encounter across the lifespan. As such, identifying associated contextual and social factors is critical for clinicians to conceptualize the impact of disability on individuals and families. However, the intersection of disability with other important sociodemographic factors are often overlooked. Due to diagnostic overshadowing of disabilities over other key elements, individuals with disabilities and their families are frequently assumed to share the same experiences, needs, and strengths regardless of gender, age, religion, socio-economic status or other determinants (Goethals, De Schauwer, & Van Hove, 2015).

Families of those with disabilities broadly experience financial strain due to added medical expenses and difficulty maintaining full-time employment outside of the home (Liu, Dokos, Fauth, Lee, & Zarit, 2019). The loss of income has a different impact on families according to other contextual factors that influence access to treatment. Families that maintain access to the necessary disability treatments despite the loss of income experience far fewer adverse outcomes in personal and relational functioning. Marginalized and underserved populations, such as racial/ethnic minority families or those living in rural communities, often experience even greater negative effects of caregiving due to lack of appropriate resources. For example, Hispanic and African-American youth are more likely to receive the appropriate frequency of necessary treatments if they are school-based (as opposed to healthcare clinics) services (Siller, Reyes, Hotez, Hutman, & Sigman, 2014). However, schools that are located in rural communities have fewer school-based services and are often deemed by the U.S. Health Resource and Services Administration as Health Professional Shortage Areas. Therefore, individuals with disabilities living in rural communities experienced disproportionately higher rates of unmet treatment needs (Karpur, Lello, Frazier, Dixon, & Shih, 2019). There is an opportunity for MFTs to support families who are disproportionately affected by disabilities by engaging in an expanding body of disability treatment research related to care coordination.

Coordinating care

Recent U.S. trends in disability-related specialty care, which we will discuss in further detail, are strongly associated with negative effects among family members by further limiting access to appropriate providers (Parker & Killian, 2020). In addition to providing routine support for daily living, family members of individuals with disabilities also assume a primary role in advocating for and accessing appropriate supports and services (e.g., education, transportation, healthcare). Among the common barriers to accessing effective supports and services for individuals with disabilities are the availability and affordability of care (Douma, Dekker, & Koot, 2006; Krauss, Gulley, Sciegaj, Wells, & Taylor, 2003).

The American Academy of Pediatrics (2014) has proposed that care coordination is a vital service that improves access to multi-provider treatments and supports the added challenges that family members of people with disabilities face. There are various, specialized disciplines that are focused on addressing the medical (e.g., neurology), psychological (e.g., applied behavior analysis), and educational (e.g., special education) needs associated with disabilities. The growing trend toward decentralization of these disability subspecialties further limits access to treatment providers for many patients. Families must endure increasingly long wait periods for appointments and are often required to drive long distances to attend appointments. In extreme, but not uncommon circumstances, some treatments may not be available at all due to the growing number of healthcare provider shortage areas in the United States that disproportionately affect individuals with disabilities (Martinez et al., 2018). Barriers to accessing appropriate supports and services place an excessive burden on family resources (i.e., financial, time) that are strongly associated with adverse effects to caregivers’ mental and physical wellbeing (Pilapil et al., 2017; Parker et al., 2020).

Additional resource: Therapy Outcomes for Neurodiverse Couples: Exploring a Solution-focused Approach. Michele L. Parker and Marissa A. Mosley

In addition to these notable difficulties with treatment accessibility, disability specialists inherently assume a pathological stance of the individual patient consistent with the medical model and rarely, if ever, consider the needs of family members. As M/CFTs are trained in collaborative care with other treatment providers, there is an opportunity for our profession to meet a growing need for this underserved population.

Marriage, couple, and family therapists are necessary to meet the needs of underserved families and couples experiencing the contextual and social influences affecting those with disabilities. Cultural competence and humility represent a key skill set of M/CFTs who are highly trained and well-equipped to facilitate connection with clients across diverse backgrounds. It is important to remember that cultural competence represents more than a professional skill set; it is a professional’s personal and ongoing desire and commitment to use those skills to understand diverse client experiences. While more research on the needs of individuals with disabilities and their families is needed to advance training of systemic therapists, the unmet needs facing individuals with disabilities and their families simply cannot wait for research and education to catch up. We propose that M/CFTs must be willing to answer the current call to work alongside individuals with disabilities and their families as a vital step in advancing the profession and addressing the ongoing disparities many individuals with disabilities and their families face.

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Families that maintain access to the necessary disability treatments despite the loss of income experience far fewer adverse outcomes in personal and relational functioning.