“How come no one can help us?” How MFTs Can Begin Treating Families with a Disability

Individuals with a disability currently constitute 26% of the population in the United States; one in four people are living with either a physical, intellectual, or developmental disability (Okoro, 2018). When composed as an entire group, individuals with a disability are the largest minority group in the U.S. (Okoro, 2018). The severity of a disability, and how it impacts someone’s life, ranges dramatically. Some disabilities are more observable to the general population, such as Down syndrome, visual impairment, or use of a wheel-chair, while others are harder to detect, such as autism, traumatic brain injury, or hearing loss.

Regardless of the type or severity of the disability, every disability impacts the family system. Parents, partners, siblings, and extended family members are each individually impacted by a disability and struggle with adapting to the various challenges and behaviors. Disabilities also create challenges in the parent-child relationship, parental subsystem, sibling relationships, and the parent-undiagnosed child relationship. Marriage and family therapists not only are trained to help individuals, but are specifically trained to treat the relationships within a family and the larger community.  

Unfortunately, many families and individuals with disabilities are being told by family therapists they are “out of their scope” and are referred to other professionals. Now, we do understand that some areas will be out of our scope of practice, such as dietary needs, medications, physical therapy, and learning or speech impairments. However, most families are looking for support in the areas of coping, grief, ambiguous loss, anxiety, stress, parenting skills, and family bonding—areas family therapists are able to effectively treat. 

If many individuals with disabilities, and their family members, need treatment by MFTs, where is the gap? Why are therapists not better equipped to help this underserved population? We believe there is a gap in the education provided in training programs. To obtain Commission on Accreditation for Marriage and Family Therapy Education (COAMFTE) accreditation, all master’s and doctoral programs must provide coursework offering information within the foundation curriculum area—Foundation Curriculum Area 3: Diverse, Multicultural and/or Underserved Communities. “This area facilitates students developing competencies in understanding and applying knowledge of diversity, power, privilege and oppression as these relate to race, age, gender, ethnicity, sexual orientation, gender identity, socioeconomic status, disability, health status, religious, spiritual and/or beliefs, nation of origin or other relevant social categories throughout the curriculum” (COAMFTE accreditation standards, 2018, p. 30).  

After randomly selecting 25 master’s level COAMFTE accredited programs, none of the programs described coursework including education regarding individuals with disabilities. However, program websites state they prepare students to effectively treat families and individuals living with a disability. Unfortunately, we cannot find evidence of training being provided to students regarding physical, intellectual, or developmental disabilities. This is a vast oversight and is not preparing MFTs to address this pressing need.

Content versus process experts

Although it is virtually impossible to educate master’s level students on treating every type of presenting problem, diagnosis, or population, we are calling all family therapists to begin educating themselves about families and individuals with disabilities. We see two types of education as critical for any mental health professional who wishes to work with families with disabilities. The first, process information, focuses on clinicians developing expertise and understanding of family dynamics and systems theory. The second, content information, focuses on the need for clinicians to become experts on the disability and how the disability can impact individuals and families.

The field of MFT has a distinct advantage in working with families and individuals with disabilities because we are process experts. Unlike other disciplines, family therapists veer away from focusing solely on an individual (or an identified patient) and instead include other interpersonal connections in a person’s life, such as family, peers, work environment and sometimes the broader community. The concepts of Cybernetics and General Systems Theory (Bertalanffy, 1968) have served as a foundation for MFT’s work since the 1950s. In other words, individual and family problems occur in the context of interactional patterns and relationships. These interactional patterns are impacted by family of origin, developmental and relational issues, and are entrenched in cyclical patterns attempting to maintain a state of homeostasis. This causes families to engage in unhealthy and dysfunctional patterns in an attempt to adapt to the child’s developmental disability. These families need a systemic therapist who can dissect these patterns and relationship dynamics to assist in differentiating and restructuring dysfunctional boundaries, allowing for optimal functioning.

AAMFT Online Courses

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• Family Treatment:
  Developmental Disabilities
• Families Living with ASD: Integrating MFT in Systems

With this systems perspective, MFTs understand family dynamics, can join with multiple systems, and have expertise in navigating difficult entanglements that occur when doing family and couple therapy. We also have experience in helping families navigate and collaborate outside of their system (i.e., schools, medical system), to create consistency between the support children receive in the school and at home. Empowering families to express their needs when working with outside agencies can help facilitate resources families need while improving the caregivers and child’s life.

Second, the field needs clinicians who are trained as content experts in working with families and individuals with disabilities. Families raising a child with a disability are faced with a myriad of challenges and stressors straining the very fiber of the family’s functioning. Not only are these families overwhelmed by the constant flow of suggestions, appointments with specialists, and schools, but their needs evolve as the individual with the disability grows older. This places a constant strain on families, and creates an increased burden on parents to work with professionals within and outside the school. An MFT’s collaboration with families can be instrumental in acknowledging and respecting the family’s strengths and unique backgrounds, while elevating their ability to make the decisions that are right for them. It also provides a layer of support in which MFTs can advocate for the families. This requires having a therapist who is knowledgeable about the specific disability, as well as the unique challenges placed on the family system. Building a relationship of trust where parents, siblings, and other family members can feel comfortable sharing concerns will be critical for developing a family-centered treatment plan. However, since COAMFTE training programs rarely focus on training therapists in treating disabilities, student therapists and clinicians often seek out specialized training from professionals in other fields. In the subsequent section, we will highlight basic skills we recommend when working with families of children with disabilities.

Environment

One area of increasing comfort for clinicians is creating an environment for families and individuals with a disability. Although each person’s needs are unique, some basic environmental necessities include: ensuring facilities are compliant with the Americans with Disability Act ADA (ADA; U.S. Department of Justice, 1990) (e.g. doorways, elevators), monitoring potential sensory triggers (e.g. fluorescent lighting, harsh sounds), and appropriate parking. Unfortunately, many older buildings are not ADA compliant and therapists, who are unfamiliar with the physical needs of someone, may not recognize or notice these needs until a client comes to therapy. Oftentimes, if I (B.T.) am unaware of the client’s needs or accommodations, I will call ahead of time to ensure the setting is appropriate and they can find necessary resources.

No two families will be impacted the same way and treating the individual family is crucial to successful therapy.

Confidence

Another aspect family therapists frequently struggle with is their level of confidence when treating a family or individual with a disability. We believe therapists should have confidence in the process information we described earlier, such as understanding models of therapy, identifying family patterns, and assessing communication cycles. Therapists often struggle with confidence in content information, such as the symptoms of a specific disability, how the disability may impact siblings, and parents’ responses to receiving a diagnosis for their child.

To gain confidence, it is first crucial for therapists to be curious when working with families. Every disability is going to impact every person and family differently. I (B.T.) state during my autism training, “When you have seen one family raising a child with autism, you have seen one family,” meaning no two families will be impacted the same way and treating the individual family is crucial to successful therapy. Second, it is okay to not know everything about a certain disability! I (B.T.) have been treating a parent of a child with Phelan-McDermid syndrome for over one year. Although I knew minimal information about the diagnosis, I informed the client of my ability to help them with their family dynamics and grieving the loss of a typically developing child.

Education on disability 

Earning a master’s degree in MFT equips therapists to understand and identify the process information discussed previously. However, the content information is also a crucial aspect for clinicians to learn. First, there are several systematically-based texts we recommend, A Spectrum of Solutions for Clients with Autism (Bédard & Hecker, 2020), Helping Couples and Families Navigate Illness and Disability (Rolland, 2018), Intellectual and Developmental Disabilities (Goff & Springer, 2018), and Systemically Treating Autism (Turns, Ramisch, & Whiting, 2019). Second, seeking consultation or supervision from other professionals can quickly increase your knowledge of a disability and the challenges families experience. Finally, online training and conference workshops can also provide more information regarding disabilities. For example, I (B.T.) have been providing intensive, autism-specific training for family therapy programs since 2014. Additionally, occupations outside of MFT may also be useful avenues for obtaining information on specific disabilities.

Collaborative care

Our final area of content information is in collaborative care. Working with a family raising a person with a disability often includes collaborating with local psychiatrists, occupational therapists, physical therapists, medical doctors, and disability-specific centers, such as autism centers. There are also numerous online and in-person resources from organizations, such as the Tim Tebow Foundation and The Arc. These types of resources can provide meaningful social support and education for family members and individuals with a disability.

We believe there is a level of cultural competence a therapist can only gain through training and content mastery. However, mastery does not need to be obtained prior to working with families with disabilities. One-fourth of the population is impacted by either a physical, emotional, or developmental disability. The field of MFT needs to rise to this occasion! As process experts, MFTs are uniquely positioned to treat and empower families and individuals who are impacted by a disability.