Tanous, Ulrich, and Walther (2023) - Occupational Therapy Transitions for Young Adults with Developmental Disabilities

Occupational Therapy’s Role in Transitioning Young Adults with Developmental Disabilities

• Primary Focused Question: What is occupational therapy’s role and best practice in assisting families with young adults with developmental disabilities ($DD$) as they transition out of the home into the community, secondary education, or supported independent living?
• Transition Scope: The transition experience is unique to every individual and involves various supports and barriers. Key transition destinations include:
  • Community integration.
  • Secondary education (universities/higher education).
  • Supported independent living environments.

Definitions and Core Concepts of Developmental Disabilities

• Developmental Disability ($DD$): Defined by the Centers for Disease Control and Prevention ($CDC$, $2022$) as a condition resulting from impairments in:
  • Physical areas.
  • Learning.
  • Language.
  • Behavioral areas.
• Timeline and Impact of $DD$:
  • Disabilities begin during the developmental period.
  • Impact daily functioning.
  • Typically persist throughout the individual's entire lifetime.
• Diagnostic Examples:
  • Autism Spectrum Disorder ($ASD$).
  • Attention-Deficit Hyperactivity Disorder ($ADHD$).
  • Cerebral Palsy ($CP$).
• Young Adult Population: For the purpose of this study, young adults are defined as individuals between the ages of $18$ and $25$.

The Role of the Family and Parental Experiences

• Parental Involvement: Collaboration between parents and professionals ($parent-professional collaboration$) positively impacts the transition from school to the community ($Francis\, et\, al.\, 2019$).
• Parental Concerns: According to $DuBois\, et\, al.\, (2020)$, families often worry about:
  • The young adult's safety.
  • Adequacy of community accommodations.
  • Inclusion in social events.
  • Potential bias and stigma associated with disabilities.
• Evolving Caregiver Roles: There is a recent trend of families becoming caregivers, sole decision-makers, and the primary support system for community engagement due to safety worries ($DuBois\, et\, al.\, 2020$).
• Cultural and Societal Influence: The role of the family is heavily dictated by societal norms and cultural views on the upbringing of young adults. This support can sometimes lead young adults to feel too comfortable at home, resulting in a lack of desire to pursue independent living ($Renwick\, et\, al.\, 2019$).
• Strategies for Parents: $Francis\, et\, al.\, (2019)$ identified strategies for parents captured via interviews with $26$ parents:
  • Setting high expectations to motivate the young adult.
  • Providing emotional support for both the parent and the young adult.
  • Maintaining ongoing communication regarding progress to prevent parents from feeling disconnected as independence grows.

Barriers and Challenges to the Transition Process

• Parental Exhaustion: Years of searching for information, resources, and advocating for their child can lead to burnout ($Francis\, et\, al.\, 2019$).
• "Letting Go": Parents may find it difficult to allow their young adult to engage in independent decision-making and experience the natural consequences of those decisions.
• Communication Failures: Breakdowns between parents and professionals/service providers.
• Systemic Barriers: Limited access to services and general distrust of professionals based on past negative experiences.
• Functional Barriers: Impairment in occupational performance caused by the specific nature and severity of the disability.

Theoretical Framework: Model of Human Occupation ($MOHO$)

Occupational therapists utilize the Model of Human Occupation ($MOHO$) as a theoretical base for transition interventions ($O'Brien\, 2017$). It consists of three primary components:

• Volition: The motivation for occupation. A person's interests, values, and personal causation determine what kind of roles and environments they desire during transition.
• Habituation: The process of organizing occupation into patterns, habits, and routines. Transitioning out of the home requires a fundamental change in a person's daily habits and roles.
• Performance Capacity: The physical and mental abilities underlying skilled occupational performance. This includes how the disability affects these abilities and how families have previously accommodated them.
• Environment: The constraints and demands of new physical and social settings.

Occupational Therapy ($OT$) Interventions and Support

• Facilitating Independence: Occupational therapists help establish roles and routines in new settings and support participation in activities for daily living ($Francis\, et\, al.\, 2019$).
• Specific Program Support:
  • For University Students: $Keptner\, et\, al.\, (2016)$ found that $OT$ services improve occupational performance and performance satisfaction for incoming freshmen.
  • Skill Development: Improving communication, comprehension, motor skills, and functional abilities ($Eismann\, et\, al.\, 2017$).
  • Work and Social Skills: Facilitating involvement in paid work, teaching social competence, and providing instructional training for daily living skills.
  • Assistive Technology: Addressing technology needs to support autonomy.
• Core Competencies: $OTs$ work to build self-determination and self-efficacy. High self-determination is correlated with improved life outcomes, as measured by Arc’s Self-Determination Scale ($SDS$) and the General Self-efficacy Scale ($GSE$) ($McPherson\, et\, al.\, 2016$).

Quantitative Findings and Research Methodology

• Data Collection Period: Literature search conducted from February $18^{th}$, $2023$, to February $27^{th}$, $2023$.
• Databases Targeted: $CINAHL$, $PubMed$, and Google Scholar.
• Search Phrases: Used terms like "occupational therapy," "young adults," "transition," and "developmental disabilities" with "AND"/"OR" operators.
• Research Volume:
  • Total articles reviewed: $44$.
  • Articles selected for in-depth analysis: $14$.
• Levels of Evidence:
  • Level I: $1$ Systematic Review (Santiago\, &\, Perez\, 2021).
  • Level III: $2$ Pretest-posttest studies (H\text{\o}jberg\, &\, Steffensen\, 2008; $Keptner\, et\, al.\, 2016$).
  • Level IV: $2$ studies ($Eismann\, et\, al.\, 2017$; $Merz\, et\, al.\, 2020$).
  • Mixed-method: $3$ studies ($McPherson\, et\, al.\, 2016$; $Neece\, et\, al.\, 2009$; $Nota\, et\, al.\, 2007$).
  • Qualitative: $4$ studies (Grounded theory/Phenomenology).
• A Notable Statistic: Less than $7\%$ of students with developmental disabilities receive $OT$ services during the transition process, indicating a significant under-utilization of the profession ($Eismann\, et\, al.\, 2017$).

Impact of Specific Disabilities on Occupational Performance

• Intellectual Disabilities (e.g., $ASD$, Down Syndrome): Struggle most with:
  • Social participation and education.
  • Home establishment and management.
  • Safety and emergency maintenance.
  • Employment acquisition and job performance.
  • Social/emotional health wellness and caring for others (Young\, &\, Suarez\, 2023).
• Physical Developmental Disabilities (e.g., $CP$): Struggle most with:
  • $ADLs$ and $IADLs$.
  • Functional mobility.
  • Leisure and physical activity.
  • Driving and community mobility ($Boisselle\, 2023$).

Clinical Bottom Line and Best Practices

• Client and Family-Centered Approach: Best practice involves recognizing the support the family provides and building rapport through person-centered assessments ($Benson\, et\, al.\, 2021$).
• Resource Education: $OTs$ must educate both the parent and the young adult about available community resources before, during, and after transition.
• Coaching Model: Transition services should use coaching for life skills to help clients acquire, retain, and apply knowledge to independent living.
• Habituation Strengthening: $OTs$ use $MOHO$ to help individuals become accustomed to their new environment, promoting competence in new roles and routines (Arvidsson\, &\, Jonsson\, 2006).
• Need for Advocacy: Due to the lack of documentation and research (only $14$ high-quality articles found), $OTs$ must establish their importance on interdisciplinary teams to ensure more than $7\%$ of the population receives needed services.