Overview of the SAFE Care Foundational Premises
It was developed through an extensive consensus-based process, involving a wide range of stakeholders, that the Supporting Access for Everyone (SAFE) Initiative established first-of-its-kind guidelines for providing accessible, equitable healthcare to youth with neurodevelopmental disabilities (NDDs). Healthcare settings seeking to become more inclusive of neurodivergent patients can learn from this groundbreaking consensus statement which lays out fundamental premises and tangible recommendations.
Essentially, SAFE Care is proactively tailored to the individual needs of patients, not forced conformity to a rigid system. Providing care that respects the autonomy, humanity, and individual circumstances of individuals is what people want and understand. Preventing emotional or physical harm is its top priority. Most importantly, it is based on the experiences and wellbeing of patients and their families rather than on arbitrary efficiency or profit metrics.
The 5 Key SAFE Care Domains
To manifest these ideals, the SAFE consensus centers on implementing changes across 5 key domains:
1. Training
Those who deal with NDD patients need training not only in diagnosing and treating them, but in providing trauma-informed, culturally-responsive support. Understanding NDD diversity, avoiding ableist biases, and learning vital skills like communication accommodations are essential for admissions staff as well as nurses and technicians.
2. Communication
Communication tailored to each patient’s needs and preferences is the lynchpin of accessible health care. We need to systematically incorporate AAC devices, visual supports, and provide ample time for receptive/expressive delays. It means sharing treatment plans with patients and caregivers in a collaborative manner.
3. Access & Planning
Equality demands proactively reaching out to families to develop individualized accommodation plans before appointments, rather than leaving that onus on overburdened caregivers. From expedited intake processes to providing sensory toolkits and quiet waiting areas, healthcare facilities must make environmental modifications to reduce barriers and distressing stimuli.
4. Diversity, Equity, Inclusion, Belonging & Anti-Ableism (DEIBA)
NDD communities must be represented in all DEIBA efforts, with autistic and developmentally disabled individuals having voices in institutional policymaking, training development, advisory roles and research studies. There must also be recognition of how racial, gender and other compounding marginalization amplify ableist discrimination.
5. Policy & Structural Change
None of these transformative initiatives will be sustainable without overhauling reimbursement models, accreditation mandates, legislation and conducting consistent quality improvement audits. From the highest administrative levels, healthcare systems must develop strategic implementation plans, solicit community feedback and advocate for equitable standards.
Co-Leading Change with the Neurodivergent Community
Underpinning all these domains is the foundational premise that youth with NDDs and their allies are the ones who must help co-lead and steer these reforms. Their input is essential for identifying pain points, collaborating on potential solutions and ensuring the cultural shift sticks. Allyship from neurotypical health professionals is also vital, but neurodivergent stakeholders must have agency over policies impacting their lives.
While sweeping in scope, the SAFE principles underscore pragmatic, common-sense practices already being successfully adopted at pioneering institutions. From clinical centers developing “healthcare passports” to ambulatory practices instituting basic etiquette like dimming lights and minimizing noise – this roadmap translates lived experiences into actionable change.
The SAFE Path is a Critical First Step
Given the immense need for improved accessibility across the entire healthcare continuum, SAFE lays vital groundwork for upending entrenched ableism. But it is merely a first step, with robust research, cross-sector collaboration, funding and sustained advocacy still required to turn these principles into lasting systemic reform.
