SAFE care for neurodevelopmental disabilities in children and youth

• All health care personnel must be trained in the fundamentals of NDDs, as well as the consequences of non-SAFE health care practices that may include trauma.

• Communication needs must be consistently accommodated and supported by clinicians, health care environments, and health settings.
• Care teams must engage patients with NDDs and their families in mutual, shared, and supported decision-making across the health care experience and throughout the lifespan.

• Health care settings should proactively invite patients and families to collaboratively develop patient-specific accommodation and support plans for use during health care encounters to address their complex needs.
• Health care settings must ensure access to interprofessional expertise, materials, and technology, and environmental adaptations needed to support patients with NDDs.

• Health care settings must include youth and adults with NDDs in their diversity, equity, inclusion, and belonging efforts.
• Professionals must recognize the impact of structural or medical ableism on people with NDDs and recognize that there is a higher-than-average prevalence of disability in many marginalized racial, ethnic, gender, and sexual identity groups.

• Health care settings must conduct an initial, as well as regular, needs and readiness assessments to evaluate their current state of practice and existing policies for people with NDDs. Based on identified barriers and facilitators, health care systems must develop and execute strategic plans to create sustainable programs and policies specific to their individual contexts.
• Health care settings must engage in continuous quality improvement of their efforts to support care for people with NDDs to ensure timely, equitable, safe, effective, and culturally relevant service provision.
• Health care settings, partnering with individuals with NDD and the public in general, must advocate for changes in reimbursement and payment models, accreditation requirements, and the passage of state and federal laws and regulations that require improvement in care for people with NDD.

Occupational therapy can:

Establish a therapeutic plan. Using the Occupational Therapy Practice Framework, practitioners must emphasize the importance of establishing a therapeutic relationship with each client and designing a treatment plan based on knowledge about the client’s environment, values, goals, and desires (OTPF-4; AOTA, 2020). The inclusion of occupational therapy services in various health care settings should be explored. This includes well visits, dentist visits, and hospitalizations to name a few.

Establish a therapeutic plan. Using the Occupational Therapy Practice Framework, practitioners must emphasize the importance of establishing a therapeutic relationship with each client and designing a treatment plan based on knowledge about the client’s environment, values, goals, and desires (OTPF-4; AOTA, 2020). The inclusion of occupational therapy services in various health care settings should be explored. This includes well visits, dentist visits, and hospitalizations to name a few.

Occupational therapy can:

Create your client’s OT profile. Consider the occupational history, experiences, values, and needs of your client to tailor your client’s treatment plan.

Occupational therapy can:

Provide continued care. The occupational therapy profession’s core belief in the positive relationship between occupation and health and its view of people as occupational beings should integrate throughout the lifespan (OTPF-4; AOTA, 2020). This includes establishing collaborative relationships that allow for continuation of care during transitional stages.

Occupational therapy can:

Create an inclusive environment. Occupational therapy practitioners should treat all individuals equitably and without bias, while exercising cultural humility and intelligence when interacting with clients, families, and support systems. “Occupational justice involves the concern that occupational therapy practitioners have with respect, fairness, and impartiality and equitable opportunities when considering the contexts of persons, groups, and populations” (OTPF-4; AOTA, 2020).

Occupational therapy can:

Engage in client-centered practice. Care should be inclusive of the whole person including mental and physical wellbeing by addressing social emotional needs. Occupational therapy practitioners can support teams in various innovative areas (e.g., sensory supports for dental care visits).

Occupational therapy can:

Get involved. Patient- and family-reported outcomes should be a measure of care and impact on quality of life. Occupational therapy practitioners can address barriers that impact quality of care to decrease and avoid poor outcomes.

Occupational therapy can:

Get creative. “Occupational therapy practitioners recognize areas of occupational injustice and work to support policies, actions, and laws that allow people to engage in occupations that provide purpose and meaning in their lives” (OTPF-4; AOTA, 2020). Advocate for your client’s needs!

• Risk of physical and emotional harm to people. This includes accidents and injuries. As well as being forcibly separated from others and being forcibly made to stop moving.
• Care that isn’t complete, or care that is not good enough.
• “Foregone care,” which means care that you may need, but don’t use. This can lead to untreated conditions. It can also lead to more people having certain health conditions.

• Biomedical model of disability that emphasizes disability as a problem to be solved.
• Quality-of-life measures that equate functioning with quality of life.
• Outcome measures such as disability-free life expectancy.
• Reliance on language that is stigmatizing and/or emphasizes deficits.
• Interpreting/describing behaviors as “challenging” rather than a form of communication, a reflection of previous trauma, and/or manifestation of a co-occurring mental health problem.

• Medicaid and Supplemental Security Income rules that limit the ability to accumulate financial assets one can have while qualifying for needed benefits.
• Reimbursement practices and organizational workflows that do not offer the flexibility needed to adapt care for individuals with NDDs.
• Not including persons with NDDs or their caregivers in the development of policies that affect them.
• Policies that facilitate physical and pharmacologic restraint or seclusion for people with NDDs.

• Not having exam tables that can adjust in height for an individual to transfer from a wheelchair or walker.
• Not having a scale that can accommodate a wheelchair.
• Not having equipment that can accommodate people who do not communicate through speech (e.g., MRI equipment where patients are instructed to “just say something” if they are uncomfortable).
• Lack of awareness of sensory needs before imposing input (e.g., use of cold stethoscopes, direct light into eyes, or flavored dental fluoride application).

• Staff not knowing how to assist patients with transfers or lifts.
• Staff unfamiliar with augmentative communication devices.
• Staff assuming nonspeaking individuals have no capacity for communication.
• Treating patients inappropriately for their age because of their disability.

• Not having environments to limit exposure to aversive stimuli such as bright lighting and/or loud or sudden sounds.
• Exam rooms that are too small for necessary equipment.
• Not having resources to support navigating the physical environment and appointments (e.g., social story or visual schedule).

• Inappropriately excluding individuals with NDDs from research studies.
• Excluding people with NDDs from providing input on research studies where it would be valuable to gain their perspectives.
• Not providing adequate supports for people with NDDs to advise or lead research.