Individuals with a neurodevelopmental disability (NDD) face significant health care barriers, disparities in health outcomes, and high rates of foregone and adverse health care experiences. The Supporting Access for Everyone (SAFE) Initiative was developed to establish principles of health care to improve equity for youth with NDDs through an evidence-informed and consensus-derived process. With the Developmental Behavioral Pediatric Research Network, the SAFE cochairs convened a consensus panel composed of diverse professionals, caregivers, and adults with NDDs who contributed their varied expertise related to SAFE care delivery. A 2-day public forum (attended by consensus panel members) was convened where professionals, community advocates, and adults with NDDs and/or caregivers of individuals with NDDs presented research, clinical strategies, and personal experiences. After this, a 2-day consensus conference was held. Using nominal group technique, the panel derived a consensus statement (CS) on SAFE care, an NDD Health Care Bill of Rights, and Transition Considerations. Ten CSs across 5 topical domains were established: (1) training, (2) communication, (3) access and planning, (4) diversity, equity, inclusion, belonging, and anti-ableism, and (5) policy and structural change. Relevant and representative citations were added when available to support the derived statements. The final CS was approved by all consensus panel members and the Developmental Behavioral Pediatric Research Network steering committee. At the heart of this CS is an affirmation that all people are entitled to health care that is accessible, humane, and effective.
Approximately 1 in 6 youth has a neurodevelopmental disability (NDD), characterized as multifaceted conditions that impact cognition, communication, motor, social, and/or behavior skills1 (see Table 1 for a glossary of key terms). Although highly heterogeneous, youth with NDDs are more likely to have substantial medical, mental health, and other support needs.1 Youth and adults with NDDs (eg, autism spectrum disorder, intellectual disability, attention-deficit/hyperactivity disorder, etc) frequently report challenges accessing medical care and have been found to have poor long-term health outcomes and higher rates of morbidity and mortality compared with neurotypical adults, often because of avoidable causes.2 –8 These disparities often begin in childhood, with children with NDDs receiving fewer preventative care well-visits and immunizations than neurotypical peers.9 ,10 In the absence of safe and accessible care, people with NDDs experience higher rates of foregone health care and more adverse events during health care encounters, including seclusion, restraint, accidents, and injury, compared with people without NDDs.11 –14 Adding further complexity, not all youth with neurodevelopmental differences seeking health care have been diagnosed with an NDD, and are even less to likely to be recognized as needing supports. Ableism, a form of discrimination that undervalues people with disabilities and assumes inferiority compared with nondisabled peers, is one factor influencing both underrecognition and care disparities. Structural ableism refers to discriminatory processes and policies that systematically reinforce and perpetuate these ableist ideas (Table 1) and maintain pervasive inequities. Recently, the National Institute on Minority Health and Health Disparities designated people with disabilities as a population with health disparities to support research addressing these forms of discrimination and other barriers to care.7
List of Key Terms
| Term | Definition |
|---|---|
| Ableism75 ,77 : | A form of discrimination against people with disabilities that undervalues people with disabilities and assumes inferiority compared with nondisabled peers. Ableism may lead to a focus on “fixing” rather than accepting, supporting, and including individuals with disabilities. Ableism can occur at the individual level, as well as at the structural level. |
| Accommodation: | Individualized changes to the environment, health care practice, or service delivery for the purpose of reducing or eliminating barriers to care |
| Care teams: | Everyone within a health care setting who directly interacts with patients with NDDs and their families from the first intake call to the point of discharge team. This may include, but is not limited to, clinicians, direct support professionals, front desk staff, intake specialists, care coordinators, etc. |
| Diagnostic overshadowing: | The tendency to attribute all future problems to a primary diagnosis, particularly a neurodevelopmental disability or mental health problem, thereby leaving other coexisting conditions undiagnosed |
| Environmental adaptation: | Modifications to aspects of the environment (eg, sensory stimuli, signs and displays, furniture arrangements) to better meet the needs of an individual |
| Health care settings: | The physical environment where individuals with NDDs and their families receive care. This can encompass a wide range of settings (eg, inpatient, outpatient, the emergency department, surgical settings). |
| Health care systems: | Differentiated from health care settings, health care systems are responsible for organizing, funding, supporting, and overseeing health care service delivery |
| Individualized care plan: | Documented and concrete guidelines on how to address the cognitive, communication, social, emotional, behavioral, and/or sensory needs of a specific patient, distributed to all team members, and available in the patient’s medical record. |
| Neurodevelopmental disabilities/disorders1 : | A group of multifaceted conditions that impact cognition, communication, motor, social, and/or behavior skills and daily functioning across a variety of domains. Examples include autism spectrum disorder, intellectual disability, communication disorders, attention-deficit/hyperactivity disorder, and motor disorders. |
| Neurodiversity97 : | A framework emphasizing natural differences in how people’s brains work, along with acceptance as opposed to seeking a cure. Neurodiversity approaches suggest that disability presents as a mismatch between the individual’s characteristics and their environment. |
| Patient care navigation systems98 ,99 : | Interventions designed to reduce barriers to care by engaging community health workers, often from similar racial and ethnic backgrounds who are trained to work as a liaison between patients and families and health care settings. |
| Shared decision-making61 ,62 ,100 : | An interactive and collaborative process in which patients, families, and clinicians play equal roles in clinical decision-making, resulting in developing a care plan on the basis of informed choice and evidence-based care. |
| Structural ableism44 : | Discriminatory processes and policies that systematically reinforce and perpetuate ableist ideas, privilege able-bodied people, fail to represent or meaningfully include disabled persons’ voices, and maintain and reproduce unequal outcomes for disabled people. |
| Supported decision-making101 : | A strategy that allows people with NDDs to retain their decision-making capacity by choosing supporters such as friends, family members, or professionals to help them make informed choices. |
| Term | Definition |
|---|---|
| Ableism75 ,77 : | A form of discrimination against people with disabilities that undervalues people with disabilities and assumes inferiority compared with nondisabled peers. Ableism may lead to a focus on “fixing” rather than accepting, supporting, and including individuals with disabilities. Ableism can occur at the individual level, as well as at the structural level. |
| Accommodation: | Individualized changes to the environment, health care practice, or service delivery for the purpose of reducing or eliminating barriers to care |
| Care teams: | Everyone within a health care setting who directly interacts with patients with NDDs and their families from the first intake call to the point of discharge team. This may include, but is not limited to, clinicians, direct support professionals, front desk staff, intake specialists, care coordinators, etc. |
| Diagnostic overshadowing: | The tendency to attribute all future problems to a primary diagnosis, particularly a neurodevelopmental disability or mental health problem, thereby leaving other coexisting conditions undiagnosed |
| Environmental adaptation: | Modifications to aspects of the environment (eg, sensory stimuli, signs and displays, furniture arrangements) to better meet the needs of an individual |
| Health care settings: | The physical environment where individuals with NDDs and their families receive care. This can encompass a wide range of settings (eg, inpatient, outpatient, the emergency department, surgical settings). |
| Health care systems: | Differentiated from health care settings, health care systems are responsible for organizing, funding, supporting, and overseeing health care service delivery |
| Individualized care plan: | Documented and concrete guidelines on how to address the cognitive, communication, social, emotional, behavioral, and/or sensory needs of a specific patient, distributed to all team members, and available in the patient’s medical record. |
| Neurodevelopmental disabilities/disorders1 : | A group of multifaceted conditions that impact cognition, communication, motor, social, and/or behavior skills and daily functioning across a variety of domains. Examples include autism spectrum disorder, intellectual disability, communication disorders, attention-deficit/hyperactivity disorder, and motor disorders. |
| Neurodiversity97 : | A framework emphasizing natural differences in how people’s brains work, along with acceptance as opposed to seeking a cure. Neurodiversity approaches suggest that disability presents as a mismatch between the individual’s characteristics and their environment. |
| Patient care navigation systems98 ,99 : | Interventions designed to reduce barriers to care by engaging community health workers, often from similar racial and ethnic backgrounds who are trained to work as a liaison between patients and families and health care settings. |
| Shared decision-making61 ,62 ,100 : | An interactive and collaborative process in which patients, families, and clinicians play equal roles in clinical decision-making, resulting in developing a care plan on the basis of informed choice and evidence-based care. |
| Structural ableism44 : | Discriminatory processes and policies that systematically reinforce and perpetuate ableist ideas, privilege able-bodied people, fail to represent or meaningfully include disabled persons’ voices, and maintain and reproduce unequal outcomes for disabled people. |
| Supported decision-making101 : | A strategy that allows people with NDDs to retain their decision-making capacity by choosing supporters such as friends, family members, or professionals to help them make informed choices. |
Although civil rights and legal mandates focus on broad initiatives to provide access to quality health care for all with NDDs, achieving health equity will require individualizing care because NDDs encompass a wide spectrum of needs (across and within specific diagnostic categories), and because of increased rates of co-occurring physical, mental, and behavioral health challenges that can complicate health care delivery.15 ,16
A critical shift in culture, mindset, and practice is necessary if health care is to be delivered equitably to everyone. There is an emerging literature evaluating accommodations, which are adaptations and modifications to policies, practices, and procedures to ensure equal access, and supports for youth with NDDs.17 ,18 There have also been systematic and scoping reviews of the limited empirical studies evaluating the effectiveness of interventions designed to improve the health care experience for people with NDDs and their families. These reviews highlight the significant limitations in the number and quality of interventions and outcomes that have been assessed within health care settings.19 –25 Existing work has been done in a wide range of disciplines (eg, multiple medical subspecialties, nursing, psychology, various allied health fields), without substantive integration into an interprofessional and community-informed framework.26 –28
In this consensus statement (CS), we have aimed to develop principles of health care for youth with NDDs and to delineate critical steps that health care settings and systems must take to achieve improved outcomes.29 This CS constitutes the first interprofessional guide for supporting youth with NDDs in health care settings and is informed by subject matter experts and those with lived experience, as well as available empirical evidence.
Methods
The Developmental Behavioral Pediatric Research Network (DBPNet) convened a group to develop this project, and the Supporting Access For Everyone (SAFE) initiative included the following phases:
Consensus panel formation. In April 2022, the cochairs identified individuals with significant clinical, research, and/or lived experience related to SAFE care delivery. Individuals were identified via Web and literature searches for work related to developing and evaluating interventions to improve the health care experience of youth with NDDs. Panelists were purposefully selected to maximize representation from key health care disciplines and those with hospital administration and policy experience. Additional panelists were selected to represent key constituencies with lived experience (adults with NDDs, caregivers). Finally, panelists were selected to ensure racial, ethnic, gender, and geographic diversity30 ,31 (see https://safedbp.org/ for SAFE panelist biographies).
Open call and public forum. In July 2022, DBPNet partnered with the Association of University Centers on Disability to publicize a call for public testimony and plan a public forum on SAFE care. We sought personal stories and opinions, model clinical initiatives, and/or research findings from “anyone with professional and/or lived experience” related to SAFE care. The call was initially distributed via affiliates of the Association of University Centers on Disability, professional and community advocate e-mail lists and social media, and both purposeful and snowball distribution to clinicians, health care administrators, public health policymakers, adults with NDDs, and families. Written or audio testimony submitted to the SAFE Web site was reviewed by the SAFE cochairs for subsequent presentation at a virtual public forum with a goal of capturing all recurrent themes. The public forum featured a total of 40 presentations. The forum was moderated by the SAFE cochairs and viewed by the consensus panel, allowing them to understand and respond to the research evidence, clinical strategies, and personal experiences shared by presenters.
Consensus panel meeting and statement generation. After the public forum, a 2-day consensus panel meeting was held. The cochairs employed systematic nominal group technique (NGT) to derive CSs on SAFE care.32 ,33 NGT is a qualitative process that has been employed to derive other health care-related CSs,34 –36 and is used to structure small and large group discussions to ensure input from all members and help a group iteratively refine ideas and reach consensus around a set of complex topics.32 ,33 The SAFE NGT process began before the in-person meeting, whereby panelists independently generated key themes of SAFE care on the basis of what they heard during the public testimony, their own experiences, and research studies provided to the panel for review. Second, those responses were grouped by the cochairs into topical domains, and recurrent themes were consolidated. Third, during the in-person meeting, panelists met in small groups and reviewed the consolidated themes within each domain, further refined and consolidated the ideas, and added content as needed. Fourth, each key theme refined by the small groups was discussed by the large group, which engaged in further refinement. Finally, panel members confidentially voted to affirm that each final theme captured a core aspect of SAFE care and accurately captured the sentiments of the group. Further editing and organization occurred during manuscript development, grouping themes into a set of foundational premises describing SAFE care (including an NDD Health Care Bill of Rights; Fig 1) and 10 CSs, organized by topical domains that included: (1) training, (2) communication, (3) access and planning, (4) diversity, equity, inclusion, belonging, and anti-ableism (DEIBA), and (5) policy and structural change (Table 2). A rationale section was included to elucidate the scope and intent of each domain’s statement(s), as well as implementation considerations that describe actionable steps and examples of SAFE care. Research citations were added where applicable. Transition considerations were included to address issues extending to adult health care settings. All edits were affirmed by the panel via e-mail.
SAFE Domains and Consensus Statements
| Domain | Consensus Statements |
|---|---|
| 1. Training | 1. 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. |
| 2. Communication | 2. Communication needs must be consistently accommodated and supported by clinicians, health care environments, and health settings. 3. 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. |
| 3. Access and planning | 4. 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. 5. Health care settings must ensure access to interprofessional expertise, materials, and technology, and environmental adaptations needed to support patients with NDDs. |
| 4. DEIBA | 6. Health care settings must include youth and adults with NDDs in their diversity, equity, inclusion, and belonging efforts. 7. 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 |
| 5. Policy and structural change | 8. 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. On the basis of identified barriers and facilitators, health care systems must develop and execute strategic plans to create sustainable programs and policies specific to their individual contexts. 9. 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. 10. 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. |
| Domain | Consensus Statements |
|---|---|
| 1. Training | 1. 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. |
| 2. Communication | 2. Communication needs must be consistently accommodated and supported by clinicians, health care environments, and health settings. 3. 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. |
| 3. Access and planning | 4. 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. 5. Health care settings must ensure access to interprofessional expertise, materials, and technology, and environmental adaptations needed to support patients with NDDs. |
| 4. DEIBA | 6. Health care settings must include youth and adults with NDDs in their diversity, equity, inclusion, and belonging efforts. 7. 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 |
| 5. Policy and structural change | 8. 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. On the basis of identified barriers and facilitators, health care systems must develop and execute strategic plans to create sustainable programs and policies specific to their individual contexts. 9. 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. 10. 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. |
Results
Foundational Premises of SAFE Care
Universal themes emerged that underpinned each CS. As a first step, health care settings must ensure that they are committed to these foundational concepts and will allocate resources to meaningfully implement them. SAFE care is:
Care that individuals understand and want
Individualized and evolving with the changing needs of a person37
Accessible throughout the entire lifespan38
Equitable and respectful39
Defined and measured by patient experience, quality of care, and psychological well-being of patients and caregivers, and not solely by narrow interpretations of safety, efficiency, and remuneration40
SAFE care reduces or eliminates:
Risk of physical and emotional harm to people, including accident, injury, restraint, and seclusion
Poor quality, inadequate, and incomplete care
Foregone care, which results in untreated health care conditions and increased morbidity and mortality
To achieve SAFE care, proactive partnerships must exist throughout the planning and delivery of care between clinicians, policymakers, health system leaders, adults and youth with NDDs, and families.41 System changes, such as upfront financial investment and resource allocation, must occur to implement the following CSs. This is needed to ensure that staff have sufficient time and training to implement SAFE care.42 Change must become an expectation and not a suggestion.
Consensus Statements
1. Training
CS 1: All health care personnel must be trained in what constitutes an NDD, and the consequences of non-SAFE health care practices, including potential trauma for patients.
Rationale
Stigma, bias, and discrimination contribute to worse health care outcomes for individuals with NDDs, and all patient-facing health care staff will work with youth with NDDs. Although training should begin in preprofessional programs, health care institutions must train all staff, emphasizing that youth with NDDs are entitled to the same respect and care as other patients. Additional training should be tailored to specific health care roles and the nature of staff interactions with youth with NDDs. All employees must understand that youth with NDDs’ responses to care might be influenced by current policies and procedures, and past trauma from the receipt of non-SAFE care. Although training alone will not be sufficient to address all the needs related to SAFE care, as with other DEIBA efforts, it is an essential component of a systematic approach to affect change.43
Implementation Considerations
Key training topics should include:
Ensuring that all staff have a basic understanding of the broad spectrum of NDDs, and knowledge of disability history and culture
Understanding how structural ableism can lead to reduced access, foregone care, and adverse outcomes and/or harm to people with NDDs (Table 3)44
Supporting bidirectional communication using preferred modalities (see the Communication domain45 –47 ).
Preparing and adjusting the environment to limit exposure to aversive sensory stimuli48 (eg, having ear plugs, quiet spaces, separate waiting rooms, perfume-free areas, and dimmable lights available37 )
Avoiding diagnostic overshadowing, which is defined as attributing all future diagnoses to a primary problem49 and developing appropriate differential diagnoses within a scope of practice
Learning to implement individualized behavioral health and accommodation plans to improve access and patient/provider safety
Developing individualized plans, for those staff with greater expertise20 ,23 ,24 ,50 ,51
Training, tailored to the recipient group, should include all health care staff, such as:
Training should be an ongoing process rather than a one-off event, in keeping with continuing education paradigms applied to health care staff.55
The intensity and frequency of training will vary depending on the degree to which staff serve populations with NDDs.
Training teams and curriculum developers need to be identified and should meaningfully involve a diverse range of youth and adults with NDDs, as well as their caregivers.57 –59
Quality improvement activities should systematically evaluate both proximal training outcomes (eg, knowledge, skills, and attitudes), as well as distal outcomes (eg, safety metrics, patterns of health care utilization, and satisfaction measures).
Examples of Structural Ableism in Health Care Settings
| Approach to disability | • 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 |
| Policies | • Medicaid and Supplemental Security Income rules that limit 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 |
| Medical equipment102 | • 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 (eg, MRI equipment where patients are instructed to “just say something” if they are uncomfortable) • Lack of awareness of sensory needs before imposing input (eg, use of cold stethoscopes, direct light into eyes, or flavored dental fluoride application) |
| Training | • 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 |
| Environment | • 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 equipment102 • Not having resources to support navigating the physical environment and appointments (eg, social story or visual schedule) |
| Research | • 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 inadequate supports for people with NDDs to advise or lead research |
| Approach to disability | • 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 |
| Policies | • Medicaid and Supplemental Security Income rules that limit 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 |
| Medical equipment102 | • 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 (eg, MRI equipment where patients are instructed to “just say something” if they are uncomfortable) • Lack of awareness of sensory needs before imposing input (eg, use of cold stethoscopes, direct light into eyes, or flavored dental fluoride application) |
| Training | • 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 |
| Environment | • 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 equipment102 • Not having resources to support navigating the physical environment and appointments (eg, social story or visual schedule) |
| Research | • 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 inadequate supports for people with NDDs to advise or lead research |
2. Communication
CS 2: Communication needs must be assessed, accommodated, and supported by clinicians, health care environments, and health settings.
CS 3: 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.
Rationale
Culturally responsive communication is an essential first step toward the adequate provision of health care for youth with NDDs and their families. Methods of communication are heterogenous and do not always include spoken language.60 All facets of the health care system must have a means to proactively promote effective communication and supported and shared decision-making for youth with NDDs and their caregivers (as appropriate) as part of standard protocolized care.
Implementation Considerations
Communication needs must be assessed proactively and routinely, and not only at the request of youth and families.47 Mirroring universal screening at other health care encounters, a systematic approach to eliciting and recording all youth’s preferred communication approaches should be implemented.
Supported and shared decision-making with youth and their caregivers or identified support people includes4 ,61 ,62 :
Introducing the health care team and explaining the process and procedures
Soliciting input
Providing and receiving feedback
Explicitly valuing the insights, autonomy, and unique life experiences of youth with NDDs, families, caregivers, and support people
Adequate time must be allocated for communication, especially with youth who use augmentative and alternative communication (AAC) strategies,2 and augmentative and alternative communication devices must be routinely incorporated into health care encounters.
Measurement of symptoms (eg, pain) must be appropriate for youth with NDDs.63 ,64
3. Access and Planning
CS 4: Health care settings should proactively invite youth and families to collaboratively develop child-specific accommodation and support plans for use during health care encounters to address their complex needs.
CS 5: Youth with NDDs must have access to interprofessional expertise, materials, and technology, and environmental adaptations within health care settings.
Rationale
People are routinely contacted before a health care encounter to update their medical record and report on new medications or clinical issues. These protocols must be expanded to incorporate the distinct needs of youth with NDDs. The responsibility falls on health care settings to reach out to patients and families, not the other way around. The combination and range of accommodations and environmental adaptations must be tailored to an individual child’s needs. Because of this complexity, successful access and planning require interprofessional collaborative care.
Implementation Considerations
For scheduled and prearranged care, planning should begin in advance of encounters to optimize care.65
Structured care plans (sometimes described as health care “passports66 ”) provide templates to improve communication of critical information between patients and health care providers.66 ,67
Plans should be easily accessible to all team members in the electronic health record.68
Templates should be designed in collaboration with the NDD community and capture universally needed information despite the heterogeneity of NDDs69 (eg, how the person communicates, their needs during procedures, special considerations, etc).
Templates should be evaluated to ensure they result in improvements in health outcomes and satisfaction.70
In some cases, individualized care plans developed as a collaboration between professionals with expertise and patients or caregivers may include:
4. Diversity, Equity, Inclusion, Belonging, and Anti-Ableism (DEIBA)
CS 6: Health care settings must include youth and adults with NDDs in their diversity, equity, inclusion, and belonging efforts.
Rationale
Individuals with NDDs are, themselves, a marginalized group, underrepresented in health professions and exposed to discrimination and inequity in health outcomes, leading to reduced access, potential harm, and health care disparities.11 ,76 This marginalization can often be attributed to an ableist mindset,77 as well as structural ableism. Health care settings must recognize that youth with NDDs may have other marginalized aspects to their identities including, racial, ethnic, linguistic, sexual, gender, religious, disability, and cultural identities. Having intersecting identities can compound health inequities shaped by structural ableism, as well as structural racism.31 ,74 ,75
Implementation Considerations
NDD priorities must be embedded within existing institutional DEIBA initiatives.78 For example, some institutions may recruit medical students and staff with NDDs to develop trainings.79 ,80 Institutions may also recruit faculty with NDDs as members of institutional review boards.
Health care settings must establish diverse patient and family advisory councils that include youth and adults with NDDs and their families.81
Health care settings must conduct community needs assessments to identify unreached, unsupported, and underserved populations within their communities.82
Implicit bias training, now routinely mandated for health care personnel and trainees, must include training in structural ableism.44 ,83 ,84
5. Policy and Structural Change
CS 8: Health care settings must conduct an initial, as well as ongoing, needs and readiness assessment to evaluate their current state of practice and existing policies for youth with NDDs. On the basis of identified barriers and facilitators, health care systems must develop and execute strategic plans to create sustainable programs and policies specific to their individual contexts.
CS 9: Health care settings must engage in continuous quality improvement of their efforts to support care for youth with NDDs to ensure timely, equitable, safe, effective, and culturally relevant service provision.
CS 10: Health care settings, partnering with youth with NDDs, their families, 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 youth with NDDs.
Rationale
Without fundamental changes to health care systems, we cannot expect existing disparities to dissipate. Support for youth with NDDs must be embedded as part of routine care, evaluated rigorously, and continuously improved. These efforts will only be sustainable if health care settings consider them fundamental to their mission and engage in regular efforts for continuous improvement. Broader system changes related to reimbursement and payment must be advocated for in the same way that health care settings have advocated for other health care priorities. System change requires both an assessment of current practice and the development of an implementation plan that regularly evaluates progress and advocates for key system-level improvements that will ensure sustainability. This statement and the implementation considerations below provide numerous examples of care processes, accommodations, and outcomes that can be operationalized into an ongoing assessment. Although a standardized assessment like the Americans with Disabilities Act Checklist for Existing Facilities,85 which focuses on mobility issues, does not yet exist for people with NDDs, this should not be a reason to not undertake ongoing assessment.
Implementation Considerations
Quality improvement efforts across the health care system need to be put in place to improve each of the following areas and to provide team members with iterative feedback23 ,24 ,86 –88 :
Electronic health record
Patient care navigation tools
Tools to assess patient needs
Accommodations
Personnel availability
Coordination of care across the health care system
Government relations and those who negotiate insurance contracts must actively address reimbursement inequities.89 –91
As a part of quality improvement efforts, data used to measure improvement should include metrics such as:
Patient and family satisfaction
Safety measures including frequency of restraint
Recidivism rates of accommodation use
Provider confidence
Test and procedure completion rates
Health outcomes for youth with NDDs.
Some metrics such as length of a visit or number of procedures may increase because of improved communication and accommodations, and should not be interpreted as inefficiency or excessive health care utilization.
Transition Considerations to Adult Care
The core principles of SAFE care must extend to adult health care settings to ensure equitable access across the lifespan. The current absence of adult-specific recommendations must be rectified and does not excuse adult health settings from advancing efforts to tailor care for individuals with NDDs. Adults require adult medical expertise and support, and there is ample evidence demonstrating disparate physical and mental health outcomes for adults with NDDs.17 ,92 Although outside the scope of the SAFE initiative’s primary focus on pediatric care, the strategies and considerations described in this document should extend across the lifespan until there are expanded action statements and approaches for adults with NDDs.
Implementation Considerations
Transition-age adolescents and adults with NDD should not be forced to remain in pediatric care systems when adult medical care is more appropriate.93 ,94
Pediatric settings must educate patients with NDDs and families to be “adult health care system” ready by developing transition programs.
Transition visits, which often include considerable nonface-to-face time reviewing records and speaking with multiple care providers, must be adequately reimbursed.
Adult health care providers must be trained and prepared to welcome and support adults with NDDs.
Adults with NDDs must be accommodated in health care settings.95 ,96
The need for supported decision-making needs to be proactively assessed to ensure an individual with NDD is maximally empowered to guide their own care.
Discussion
This is the first CS to define the principles of practice in health care settings for youth with NDDs and to outline actionable steps that health care settings must take to equitably serve this population. The SAFE foundational principles and CS were derived by a consensus panel composed of a diverse group of people with professional expertise and lived experience, informed by extensive community input and literature review, and developed by using NGT to achieve consensus on each CS. Our approach highlighted the importance of interprofessional–community collaboration in identifying priorities and strategies for change and the value of obtaining input from invested members of the public. This CS was designed to have immediate implications for health care settings to improve training, care delivery, and policies.
Access to health care for people with NDDs needs to urgently improve, with reductions in the rates of foregone care, adverse outcomes, and morbidity and mortality. Successful implementation requires a shift in culture, mindset, and practice despite potentially encountering significant obstacles. At the heart of this CS is an affirmation that all people are entitled to health care that is accessible, humane, and effective.
There are several strengths and limitations to this CS. The greatest strength of this statement was incorporating varied perspectives from health care professionals, adults with NDDs, caregivers of youth and adults with NDDs, members of the public, and DBPNet. The most significant limitation of this statement is the lack of existing research evaluating the efficacy of many of the accommodations, support strategies, and training approaches described in this statement. Therefore, we were not able to complete traditional evidence grading for a best practices statement, relying instead on NGT to develop a consensus among an expert panel. Additionally, it is not clear if the available support approaches evaluated for one group of youth with NDDs will generalize to other NDD populations. Lastly, the perspective of youth with NDDs was not obtained or represented on the consensus panel.
Call to Action
This CS is the beginning of the work needed to implement SAFE care. There is a need for more research to identify effective tools and strategies that have been implemented within pediatric health care settings and across different populations of youth with NDDs. Studies need to be large, systemwide, multisite, community-informed research efforts with measurable outcomes, and funders need to prioritize this type of research. Adults and youth with NDDs should be included in research design and execution. Additional work needs to focus on whether and to what extent implementing SAFE care improves access, reduces foregone care and adverse outcomes, and ultimately impacts morbidity and mortality rates of people with NDDs. Funding also needs to be devoted to developing assessment of structural ableism within health care settings. Efforts will be needed to disseminate effective evidence-based and community-supported strategies, tools, and accommodations so that health care settings can implement the CS with fidelity.
Work needs to be devoted toward understanding the financial impact of SAFE care. Although some of the changes described in this statement, such as longer visits, more accommodations, and developing proactive care plans, may incur cost, there may also be significant cost savings if more accurate medical histories are obtained, length of hospital stays are reduced, incomplete tests or procedures that need to be repeated are decreased, and there are reduced rates of missed or delayed diagnoses that can result in a higher level of disease severity at the time of presentation. In addition, cost savings may also occur if there is less staff absence, turnover, or disability because of accidents and injury because of encounters with patients with NDDs.
This document reflects the current consensus on SAFE care, which we expect to evolve over time as additional research and community contributions respond to the document. Research will need to be conducted to determine the impact of SAFE across the entire health care system. We call on regulatory bodies such as the Joint Commission to adopt SAFE care as part of their accreditation standards, particularly since its mission is to continuously improve health care for the public by setting quality standards.
We believe that this CS lays the groundwork to begin to transform the quality of health care and will improve accessibility for all.
Acknowledgments
We thank the SAFE consensus panel: Scott Allen, MS; Paige Cervantes, PhD, BCBA; Donnie TC Denome, MPH; Varleisha D. Gibbs, PhD, OTD, OTR/L; Rachel Honore; Yetta Myrick, BA; Christina Nicolaidis, MD, MPH; Morénike Giwa Onaiwu, PhD, MA; Lauren Raskin Ramos, MPH; Wendy J. Ross, MD, FAAP; Mary Rumple, BA, CCLS; Matthew Siegel, MD; Rena Sorensen, PhD; Sarah Spence, MD, PhD; Jackie Ward, DNP, RN, NE-BC.
We also thank the numerous individuals and groups who supported the SAFE initiative, including Jaclyn Cacia and Jazmine Smith from DBPNet; Jackie Czyzia, Rachel Miller, Jeanette Córdova, and Oksana Klimova from Interdisciplinary Technical Assistance Center on Autism and Developmental Disabilities; Maura Maloney from the Health Resources and Services Administration; and all individuals who submitted or presented content to the SAFE public forum.
We also thank the following individuals who contributed as members of the DBPNet Steering Committee, listed by institution: Albert Einstein College of Medicine/Children’s Hospital at Montefiore Medical Center: Ruth Stein; Baylor College of Medicine: Holly Harris; Boston Children’s Hospital, Harvard School of Medicine: William Barbaresi; Children’s Hospital Colorado: Sandra Friedman; Children’s Hospital Los Angeles: Douglas Vanderbilt; Cincinnati Children’s Hospital Medical Center/University of Cincinnati: Susan Wiley; Hasbro Children’s Hospital/Brown Medical School: Pamela High; Lucile Packard Children’s Hospital: Heidi M. Feldman; New York University Grossman School of Medicine: Alan Mendelsohn; Rainbow Babies and Children’s Hospital: Nancy Roizen; University of Arkansas for Medical Sciences: Jill Fussell; University of California, Davis, Medical Investigation of Neurodevelopmental Disorders Institute: Robin Hansen; University of Oklahoma Health Sciences Center: Amy Bax. DBPNet is supported by cooperative agreement UT5MC42432 from the Maternal and Child Health Bureau, Health Resources and Services Administration, US Department of Health and Human Services. This information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the US Government.
Drs Weitzman, Nadler, and Augustyn conceptualized and designed the study, drafted the initial manuscript, cochaired the consensus panel, moderated the public forum and the consensus panel meeting, and oversaw all aspects related to developing the consensus statement; Dr Blum participated in the public forum and consensus panel meeting; and all authors conceptualized and designed the study, drafted the initial manuscript, critically reviewed and revised the manuscript, approved the final manuscript as submitted, and agree to be accountable for all aspects of the work. Panel members contributed to writing and editing, but were not responsible for completion of the final manuscript.
FUNDING: Supported by the Developmental Behavioral Pediatric Research Network and the Association of University Centers on Disability. The funder had no role in the design or conduct of this study. However, the director of the Maternal and Child Health Bureau Division of Maternal and Child Health Workforce Development was invited by the project cochairs to participate on the consensus panel because of her role in leading Maternal and Child Health workforce development at the federal level. She participated in the consensus process and review of the manuscript in a manner identical to other consensus panel members.
CONFLICT OF INTEREST DISCLOSURES: Dr Weitzman is a past consultant for Helios/Meliora. The other authors have indicated they have no conflicts of interest relevant to this article to disclose. The Developmental Behavioral Pediatric Research Network is supported by cooperative agreement UT5MC42432 from the Maternal and Child Health Bureau, the Health Resources and Services Administration, and the US Department of Health and Human Services. This information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by, the Health Resources and Services Administration, the US Department of Health and Human Services, or the US government.
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