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We pediatricians consider ourselves as compassionate professionals, optimistic about the potential of all children. This is reflected in the American Academy of Pediatrics’ equity statement of “its mission to ensure the health and well-being of all children. This includes promoting nurturing, inclusive environments and actively opposing intolerance, bigotry, bias, and discrimination.”
A committee of the Developmental Behavioral Pediatric Network developed and published a consensus statement specifically about problems in the care of individuals with neurodevelopmental disabilities (NDD) called the Supporting Access for Everyone (SAFE) initiative. All of us care for children with NDD as one in six are affected with these conditions that impact cognition, communication, motor, social, and/or behavior skills such as autism, ADHD, intellectual disabilities (ID), learning disorders, hearing or vision impairment, and motor disabilities such as cerebral palsy. Children with NDD are overrepresented in our daily practice schedule due to their multiple medical, behavioral, and social needs. NDD are also more common among marginalized children with racial, ethnic, sexual, or gender identity minority status compounding their difficulties in accessing quality care.
NDD present similar challenges to care as other chronic conditions that also require longer visits, more documentation, long-term monitoring, team-based care, care coordination, and often referrals. But most chronic medical conditions we care for such as asthma, diabetes, cancer, hypertension, and renal disease have clear national guidelines and appropriate billing codes and are not stigmatizing. Most also do not intrinsically affect the nervous system or cause disability as for NDD that alter the behavioral presentation of the individual in a way that changes their care.
Discrimination against individuals with NDD and other disabilities, called “ableism,” can take many forms: assuming a child with communication difficulty or ID is unable to understand explanations about their care; the presence of one NDD condition ending the clinician’s search for other issues; complicated problems or difficult behaviors in the medical setting truncating care, etc.
Adjustments Needed for Special Needs
As pediatricians we already adjust our interactions, starting instinctively, to the development level of the child we perceive before us. We approach infants slowly and softly, we speak in shorter sentences to toddlers, we joke around with school-aged children, and we take extra care about privacy with teens. This serves the relationships well for neurotypical children. But our (and our staff’s) perceptions of children with autism, ID, genetic syndromes that include NDD, or motor disabilities based on their behavioral presentation may not accurately recognize or accommodate their abilities or needs. Communication and environmental adjustments may need to be much more individualized to provide respectful care, comfort and even safety.
As an example, at this time 1 in 36 children have autism with or without ID. Defining features of autism include differences in social communication, repetitive or restrictive interests or behaviors, and hypersensitivity to the environment plus any coexisting conditions such as anxiety and hyperactivity. But most children with autism have completely age appropriate and typical physical appearance and their underlying condition may not even be known. The office setting, without special attention to the needs of a child with autism, may be frightening, loud, too bright, too crowded, fast paced, and confusing. The result of their sensitivities and difficulty communicating may lead to increased agitation, repetitive behaviors (sometimes called “stimming”), shrieking, attempts to escape the room, refusal to allow for vital signs or undressing, even aggression. Strategies for calming a neurotypical child such as talking or touching may make matters worse instead of better. We need help from the child and family and a plan to optimize their medical encounters.
If not adequately accommodated, children with many varieties of NDD end up not getting all the routine healthcare they need (eg vaccinations, blood tests, vital signs, even complete physical exams including dental) as well as having more adverse events during health care, including traumatizing seclusion, not allowing a support person to be present, restraint, injuries, and accidents. When more complex procedures are needed, eg x-ray, MRI, EEG, lab studies, or surgery, successful outcomes may be lower. Children with NDD have higher rates of often avoidable morbidity and mortality than those without, in part due to these barriers to complete care. While environmental accommodations to wheelchair users for accessibility has greatly improved in recent years, access to other kinds of individualized accommodations have lagged behind.
Accommodation Planning
There are a variety of factors that need to be taken into consideration in accommodating an individual with NDD. The family becomes the expert, along with the child, in knowing the child’s triggers, preferences, abilities, and level of understanding to accept and consent for care. An accommodation plan should be created using shared and supported decision making with the family and child and allowing for child preferences, regardless of their ability level, whenever possible. Development of an accommodation plan may benefit from multidisciplinary input, eg psychology, physical therapy, speech pathology, depending on the child’s needs and the practice’s ability to adapt.
The SAFE initiative is in the process of creating a checklist aiming to facilitate a description being created for each individual to help plan for a successful medical encounter while optimizing the child’s comfort, participation, and safety. While the checklist is not yet ready, we can start now by asking families and children in preparation for or at the start of a visit about their needs and writing a shared document that can also be placed in the electronic health record for the entire care team for informing care going forward.
It is especially important for the family to keep a copy of the care plan and for it to be sent as part of referrals for procedures or specialty visits so that the professionals can prepare and adapt the encounter. An excellent example is a how some hospitals schedule a practice visit for the child to experience the sights and sounds and people the child will encounter, for example, before an EEG, when nothing is required of the child. Scheduling the actual procedure at times of day when clinics are less crowded and wait times are shorter can improve the chances of success.
Some categories and details that might be included in an accommodation plan are listed below:
You might start the plan with the child’s preferred name/nickname, family member or support person names, and diagnoses along with a brief overview of the child’s level of functioning. Then list categories of needs and preferences along with suggestions or requests.
- Motor: Does the child have or need assistance entering the building, visit room, bathroom, or transferring to the exam table? What kind of assistance, if any, and by whom?
- Sensory: Is the child disturbed by noise, lights, or being touched? Does the child want to use equipment to be comfortable such as headphones, earplugs, or sunglasses or need a quiet room, care without perfumes, or dimmed lighting? Does the child typically refuse aspects of the physical examination?
- Behavioral regulation: What helps the child to stay calm? Are there certain triggers to becoming upset? Are there early cues that an upset is coming? What and who can help in the case of an upset?
- Habits/preferences: Are there certain comfort objects or habits your child needs? Are there habits your child needs to do, such as a certain order of events, or use of social stories or pictures, to cooperate or feel comfortable?
- Communication: How does the child make his/her needs known? Does the child/family speak English or another language? Does he/she use sign language or an augmentative communication device? What level of understanding does your child have; for example, similar to what age for a typical child? Is there a care plan with accommodations already available that needs review or needs revision with the child’s development or is a new one needed? Was the care plan developed including the child’s participation and assent or is more collaboration needed?
- History: Has your child had any very upsetting experiences in healthcare settings? What happened? Has the trauma been addressed? Are there reminders of the trauma that should be avoided?
- Other: Are there other things we should know about your child as an individual to provide the best care?
There are many actions needed to do better at ensuring equitable care for individuals with NDD. We should educate our office and medical staff about NDD in children and the importance of accommodating their needs, and ways to do it. The morning huddle can be used to remind staff of upcoming visits of children who may need accommodations. We then need to use quality improvement methods to check in periodically on how the changes are working for the children, families, and practice in order to continually improve.
The overall healthcare system also needs to change. Billing codes should reflect the time, complexity of accommodations, and documentation that were required for care. Episodes of the visit may need to be broken up within the day or over several days to allow the child to practice, calm down, and cooperate and this should be accounted for in billing. Given that NDD are generally lifelong conditions, payment systems that require measures of progress such as value-based payment based on improved outcomes will need to be adjusted to measure quality of care rather than significant progress.
We need to advocate for both individual children and for system changes to work toward equity of care for those with disabilities to make their lives more comfortable as well as ours.
Dr. Howard is assistant professor of pediatrics at The Johns Hopkins University School of Medicine, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at [email protected].
We pediatricians consider ourselves as compassionate professionals, optimistic about the potential of all children. This is reflected in the American Academy of Pediatrics’ equity statement of “its mission to ensure the health and well-being of all children. This includes promoting nurturing, inclusive environments and actively opposing intolerance, bigotry, bias, and discrimination.”
A committee of the Developmental Behavioral Pediatric Network developed and published a consensus statement specifically about problems in the care of individuals with neurodevelopmental disabilities (NDD) called the Supporting Access for Everyone (SAFE) initiative. All of us care for children with NDD as one in six are affected with these conditions that impact cognition, communication, motor, social, and/or behavior skills such as autism, ADHD, intellectual disabilities (ID), learning disorders, hearing or vision impairment, and motor disabilities such as cerebral palsy. Children with NDD are overrepresented in our daily practice schedule due to their multiple medical, behavioral, and social needs. NDD are also more common among marginalized children with racial, ethnic, sexual, or gender identity minority status compounding their difficulties in accessing quality care.
NDD present similar challenges to care as other chronic conditions that also require longer visits, more documentation, long-term monitoring, team-based care, care coordination, and often referrals. But most chronic medical conditions we care for such as asthma, diabetes, cancer, hypertension, and renal disease have clear national guidelines and appropriate billing codes and are not stigmatizing. Most also do not intrinsically affect the nervous system or cause disability as for NDD that alter the behavioral presentation of the individual in a way that changes their care.
Discrimination against individuals with NDD and other disabilities, called “ableism,” can take many forms: assuming a child with communication difficulty or ID is unable to understand explanations about their care; the presence of one NDD condition ending the clinician’s search for other issues; complicated problems or difficult behaviors in the medical setting truncating care, etc.
Adjustments Needed for Special Needs
As pediatricians we already adjust our interactions, starting instinctively, to the development level of the child we perceive before us. We approach infants slowly and softly, we speak in shorter sentences to toddlers, we joke around with school-aged children, and we take extra care about privacy with teens. This serves the relationships well for neurotypical children. But our (and our staff’s) perceptions of children with autism, ID, genetic syndromes that include NDD, or motor disabilities based on their behavioral presentation may not accurately recognize or accommodate their abilities or needs. Communication and environmental adjustments may need to be much more individualized to provide respectful care, comfort and even safety.
As an example, at this time 1 in 36 children have autism with or without ID. Defining features of autism include differences in social communication, repetitive or restrictive interests or behaviors, and hypersensitivity to the environment plus any coexisting conditions such as anxiety and hyperactivity. But most children with autism have completely age appropriate and typical physical appearance and their underlying condition may not even be known. The office setting, without special attention to the needs of a child with autism, may be frightening, loud, too bright, too crowded, fast paced, and confusing. The result of their sensitivities and difficulty communicating may lead to increased agitation, repetitive behaviors (sometimes called “stimming”), shrieking, attempts to escape the room, refusal to allow for vital signs or undressing, even aggression. Strategies for calming a neurotypical child such as talking or touching may make matters worse instead of better. We need help from the child and family and a plan to optimize their medical encounters.
If not adequately accommodated, children with many varieties of NDD end up not getting all the routine healthcare they need (eg vaccinations, blood tests, vital signs, even complete physical exams including dental) as well as having more adverse events during health care, including traumatizing seclusion, not allowing a support person to be present, restraint, injuries, and accidents. When more complex procedures are needed, eg x-ray, MRI, EEG, lab studies, or surgery, successful outcomes may be lower. Children with NDD have higher rates of often avoidable morbidity and mortality than those without, in part due to these barriers to complete care. While environmental accommodations to wheelchair users for accessibility has greatly improved in recent years, access to other kinds of individualized accommodations have lagged behind.
Accommodation Planning
There are a variety of factors that need to be taken into consideration in accommodating an individual with NDD. The family becomes the expert, along with the child, in knowing the child’s triggers, preferences, abilities, and level of understanding to accept and consent for care. An accommodation plan should be created using shared and supported decision making with the family and child and allowing for child preferences, regardless of their ability level, whenever possible. Development of an accommodation plan may benefit from multidisciplinary input, eg psychology, physical therapy, speech pathology, depending on the child’s needs and the practice’s ability to adapt.
The SAFE initiative is in the process of creating a checklist aiming to facilitate a description being created for each individual to help plan for a successful medical encounter while optimizing the child’s comfort, participation, and safety. While the checklist is not yet ready, we can start now by asking families and children in preparation for or at the start of a visit about their needs and writing a shared document that can also be placed in the electronic health record for the entire care team for informing care going forward.
It is especially important for the family to keep a copy of the care plan and for it to be sent as part of referrals for procedures or specialty visits so that the professionals can prepare and adapt the encounter. An excellent example is a how some hospitals schedule a practice visit for the child to experience the sights and sounds and people the child will encounter, for example, before an EEG, when nothing is required of the child. Scheduling the actual procedure at times of day when clinics are less crowded and wait times are shorter can improve the chances of success.
Some categories and details that might be included in an accommodation plan are listed below:
You might start the plan with the child’s preferred name/nickname, family member or support person names, and diagnoses along with a brief overview of the child’s level of functioning. Then list categories of needs and preferences along with suggestions or requests.
- Motor: Does the child have or need assistance entering the building, visit room, bathroom, or transferring to the exam table? What kind of assistance, if any, and by whom?
- Sensory: Is the child disturbed by noise, lights, or being touched? Does the child want to use equipment to be comfortable such as headphones, earplugs, or sunglasses or need a quiet room, care without perfumes, or dimmed lighting? Does the child typically refuse aspects of the physical examination?
- Behavioral regulation: What helps the child to stay calm? Are there certain triggers to becoming upset? Are there early cues that an upset is coming? What and who can help in the case of an upset?
- Habits/preferences: Are there certain comfort objects or habits your child needs? Are there habits your child needs to do, such as a certain order of events, or use of social stories or pictures, to cooperate or feel comfortable?
- Communication: How does the child make his/her needs known? Does the child/family speak English or another language? Does he/she use sign language or an augmentative communication device? What level of understanding does your child have; for example, similar to what age for a typical child? Is there a care plan with accommodations already available that needs review or needs revision with the child’s development or is a new one needed? Was the care plan developed including the child’s participation and assent or is more collaboration needed?
- History: Has your child had any very upsetting experiences in healthcare settings? What happened? Has the trauma been addressed? Are there reminders of the trauma that should be avoided?
- Other: Are there other things we should know about your child as an individual to provide the best care?
There are many actions needed to do better at ensuring equitable care for individuals with NDD. We should educate our office and medical staff about NDD in children and the importance of accommodating their needs, and ways to do it. The morning huddle can be used to remind staff of upcoming visits of children who may need accommodations. We then need to use quality improvement methods to check in periodically on how the changes are working for the children, families, and practice in order to continually improve.
The overall healthcare system also needs to change. Billing codes should reflect the time, complexity of accommodations, and documentation that were required for care. Episodes of the visit may need to be broken up within the day or over several days to allow the child to practice, calm down, and cooperate and this should be accounted for in billing. Given that NDD are generally lifelong conditions, payment systems that require measures of progress such as value-based payment based on improved outcomes will need to be adjusted to measure quality of care rather than significant progress.
We need to advocate for both individual children and for system changes to work toward equity of care for those with disabilities to make their lives more comfortable as well as ours.
Dr. Howard is assistant professor of pediatrics at The Johns Hopkins University School of Medicine, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at [email protected].
We pediatricians consider ourselves as compassionate professionals, optimistic about the potential of all children. This is reflected in the American Academy of Pediatrics’ equity statement of “its mission to ensure the health and well-being of all children. This includes promoting nurturing, inclusive environments and actively opposing intolerance, bigotry, bias, and discrimination.”
A committee of the Developmental Behavioral Pediatric Network developed and published a consensus statement specifically about problems in the care of individuals with neurodevelopmental disabilities (NDD) called the Supporting Access for Everyone (SAFE) initiative. All of us care for children with NDD as one in six are affected with these conditions that impact cognition, communication, motor, social, and/or behavior skills such as autism, ADHD, intellectual disabilities (ID), learning disorders, hearing or vision impairment, and motor disabilities such as cerebral palsy. Children with NDD are overrepresented in our daily practice schedule due to their multiple medical, behavioral, and social needs. NDD are also more common among marginalized children with racial, ethnic, sexual, or gender identity minority status compounding their difficulties in accessing quality care.
NDD present similar challenges to care as other chronic conditions that also require longer visits, more documentation, long-term monitoring, team-based care, care coordination, and often referrals. But most chronic medical conditions we care for such as asthma, diabetes, cancer, hypertension, and renal disease have clear national guidelines and appropriate billing codes and are not stigmatizing. Most also do not intrinsically affect the nervous system or cause disability as for NDD that alter the behavioral presentation of the individual in a way that changes their care.
Discrimination against individuals with NDD and other disabilities, called “ableism,” can take many forms: assuming a child with communication difficulty or ID is unable to understand explanations about their care; the presence of one NDD condition ending the clinician’s search for other issues; complicated problems or difficult behaviors in the medical setting truncating care, etc.
Adjustments Needed for Special Needs
As pediatricians we already adjust our interactions, starting instinctively, to the development level of the child we perceive before us. We approach infants slowly and softly, we speak in shorter sentences to toddlers, we joke around with school-aged children, and we take extra care about privacy with teens. This serves the relationships well for neurotypical children. But our (and our staff’s) perceptions of children with autism, ID, genetic syndromes that include NDD, or motor disabilities based on their behavioral presentation may not accurately recognize or accommodate their abilities or needs. Communication and environmental adjustments may need to be much more individualized to provide respectful care, comfort and even safety.
As an example, at this time 1 in 36 children have autism with or without ID. Defining features of autism include differences in social communication, repetitive or restrictive interests or behaviors, and hypersensitivity to the environment plus any coexisting conditions such as anxiety and hyperactivity. But most children with autism have completely age appropriate and typical physical appearance and their underlying condition may not even be known. The office setting, without special attention to the needs of a child with autism, may be frightening, loud, too bright, too crowded, fast paced, and confusing. The result of their sensitivities and difficulty communicating may lead to increased agitation, repetitive behaviors (sometimes called “stimming”), shrieking, attempts to escape the room, refusal to allow for vital signs or undressing, even aggression. Strategies for calming a neurotypical child such as talking or touching may make matters worse instead of better. We need help from the child and family and a plan to optimize their medical encounters.
If not adequately accommodated, children with many varieties of NDD end up not getting all the routine healthcare they need (eg vaccinations, blood tests, vital signs, even complete physical exams including dental) as well as having more adverse events during health care, including traumatizing seclusion, not allowing a support person to be present, restraint, injuries, and accidents. When more complex procedures are needed, eg x-ray, MRI, EEG, lab studies, or surgery, successful outcomes may be lower. Children with NDD have higher rates of often avoidable morbidity and mortality than those without, in part due to these barriers to complete care. While environmental accommodations to wheelchair users for accessibility has greatly improved in recent years, access to other kinds of individualized accommodations have lagged behind.
Accommodation Planning
There are a variety of factors that need to be taken into consideration in accommodating an individual with NDD. The family becomes the expert, along with the child, in knowing the child’s triggers, preferences, abilities, and level of understanding to accept and consent for care. An accommodation plan should be created using shared and supported decision making with the family and child and allowing for child preferences, regardless of their ability level, whenever possible. Development of an accommodation plan may benefit from multidisciplinary input, eg psychology, physical therapy, speech pathology, depending on the child’s needs and the practice’s ability to adapt.
The SAFE initiative is in the process of creating a checklist aiming to facilitate a description being created for each individual to help plan for a successful medical encounter while optimizing the child’s comfort, participation, and safety. While the checklist is not yet ready, we can start now by asking families and children in preparation for or at the start of a visit about their needs and writing a shared document that can also be placed in the electronic health record for the entire care team for informing care going forward.
It is especially important for the family to keep a copy of the care plan and for it to be sent as part of referrals for procedures or specialty visits so that the professionals can prepare and adapt the encounter. An excellent example is a how some hospitals schedule a practice visit for the child to experience the sights and sounds and people the child will encounter, for example, before an EEG, when nothing is required of the child. Scheduling the actual procedure at times of day when clinics are less crowded and wait times are shorter can improve the chances of success.
Some categories and details that might be included in an accommodation plan are listed below:
You might start the plan with the child’s preferred name/nickname, family member or support person names, and diagnoses along with a brief overview of the child’s level of functioning. Then list categories of needs and preferences along with suggestions or requests.
- Motor: Does the child have or need assistance entering the building, visit room, bathroom, or transferring to the exam table? What kind of assistance, if any, and by whom?
- Sensory: Is the child disturbed by noise, lights, or being touched? Does the child want to use equipment to be comfortable such as headphones, earplugs, or sunglasses or need a quiet room, care without perfumes, or dimmed lighting? Does the child typically refuse aspects of the physical examination?
- Behavioral regulation: What helps the child to stay calm? Are there certain triggers to becoming upset? Are there early cues that an upset is coming? What and who can help in the case of an upset?
- Habits/preferences: Are there certain comfort objects or habits your child needs? Are there habits your child needs to do, such as a certain order of events, or use of social stories or pictures, to cooperate or feel comfortable?
- Communication: How does the child make his/her needs known? Does the child/family speak English or another language? Does he/she use sign language or an augmentative communication device? What level of understanding does your child have; for example, similar to what age for a typical child? Is there a care plan with accommodations already available that needs review or needs revision with the child’s development or is a new one needed? Was the care plan developed including the child’s participation and assent or is more collaboration needed?
- History: Has your child had any very upsetting experiences in healthcare settings? What happened? Has the trauma been addressed? Are there reminders of the trauma that should be avoided?
- Other: Are there other things we should know about your child as an individual to provide the best care?
There are many actions needed to do better at ensuring equitable care for individuals with NDD. We should educate our office and medical staff about NDD in children and the importance of accommodating their needs, and ways to do it. The morning huddle can be used to remind staff of upcoming visits of children who may need accommodations. We then need to use quality improvement methods to check in periodically on how the changes are working for the children, families, and practice in order to continually improve.
The overall healthcare system also needs to change. Billing codes should reflect the time, complexity of accommodations, and documentation that were required for care. Episodes of the visit may need to be broken up within the day or over several days to allow the child to practice, calm down, and cooperate and this should be accounted for in billing. Given that NDD are generally lifelong conditions, payment systems that require measures of progress such as value-based payment based on improved outcomes will need to be adjusted to measure quality of care rather than significant progress.
We need to advocate for both individual children and for system changes to work toward equity of care for those with disabilities to make their lives more comfortable as well as ours.
Dr. Howard is assistant professor of pediatrics at The Johns Hopkins University School of Medicine, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at [email protected].