Chapter 734

Health and Wellness for Children With Disabilities

Maria G. Martinez, David M. Kanter, Margaret A. Turk

See also Chapter 17 .

The expansion of the disability definition to include children with special healthcare needs, chronic conditions, and activity limitations from any cause (e.g., limitations in usual daily activities such as age-appropriate self-care, mobility, communication, and cognition) has made the health issues of the more traditional childhood disability types (e.g., cerebral palsy, intellectual disability, spina bifida, congenital musculoskeletal disorders) more difficult to identify. U.S. data identify developmental, emotional, and behavioral conditions as the leading conditions with activity or functional limitations, with physical health conditions comprising a smaller proportion of self-identified disabilities (although mobility and motor control issues may be noted among the aforementioned nonphysical conditions). Childhood cognitive, mental, and physical health problems contribute to continued economic and health problems into adulthood. Because these problems can respond to childhood and adolescent health promotion interventions, monitoring children with disabilities throughout their development is helpful in providing information and support to children and adolescents, their parents, and families to promote health over a lifetime.

Health Promotion Definitions and Background for Disability

The World Health Organization (WHO) defines health promotion as “the process of enabling people to increase control over, and to improve, their health.” For people with disabilities, this concept is important because they are both underserved and have comparatively large health disparities. The WHO further defines health promotion approaches as including more than health education and consisting of community action, supportive and accessible environments, policy changes, health service modifications, and development of personal skills. Health and wellness programs also include traditional preventive management strategies, such as anticipatory guidance. There is ample evidence that engaging in specific areas of health promotion results in improvement, although the evidence for its influence on adult health is less robust.

Children with disabilities encounter many barriers to healthy behaviors (Table 734.1 ). Both broad and focused health promotion programs consider severity of condition, barriers and resources, and self-efficacy and resiliency to achieve health-promoting behaviors. Children with disabilities may also require modeling or assistance to apply healthy behaviors to their particular disability or economic, social, and environmental circumstances.

Table 734.1

Barriers and Facilitators for Children to Engage in Healthy Behaviors

BARRIERS

FACILITATORS

• Lack of knowledge and skills • Fear of injury or failure • Negative attitudes by parents, peers, healthcare providers • Poor parental healthy behaviors • Stress in the close family network • Personal choices • Fatigue • Lack of initiative • Limited function or capability • Inability to control behaviors • Inaccessible facilities or resources • Needing adult or aid assistance • Economic restrictions • Policies and procedures of facilities or programs • Noninclusive providers • Transport challenges

• Education or knowledge about healthy behaviors • Engaging child in discussions and decisions • Promotion of activities by rehabilitation and other healthcare professionals • Family support and participation • Involvement of friends and peers in activities • Desire to be active • Models or directions for participation with adaptations • Creative and knowledgeable professionals • Making activities a part of the routine—repetition and consistency promote ongoing activities • Accessible facilities and opportunities, with knowledgeable staff • Policies and resources promoting participation • Welcoming and inclusive providers • Adaptable approaches

Children and adults (and their families) often view health differently than those without disabilities. Disability may influence health and vice versa, but their perception of their own health and wellness does not equate with their level of disability. Children with congenital or acquired disabilities have a narrow view of healthy living, concentrating on nutrition and secondarily on physical activity, with little understanding of how they apply to their own condition. Experiences as a child with a disability often foreshadow adult behaviors, especially negative attitudes toward therapy, exercise, and activity. Beliefs of parents, families, and healthcare providers also influence the views of health by children with disabilities. Health promotion programs for these children must (1) understand and support the role and well-being of parents, (2) recognize that parents of children with more functional limitations may require more resources and support, (3) involve children with disabilities in design of programs and decisions about participation, and (4) address barriers to participation, perceived and real (see Table 734.1 ).

An effective health and wellness program should involve multiple approaches and opportunities for success, including partnerships with families, school staff, and rehabilitation providers. Competency requires addressing any mismatch between the child's positive sense of health and well-being and that expected by the healthcare providers; limitations of an education-only model; engaging the child in discussions about the importance of healthy behaviors, ways to engage in healthy behaviors related to the child's disability and circumstances, and decisions about participation; and parent and family involvement coupled with sensitivity for the already overwhelming support a family provides for the child with a disability.

Anticipatory Guidance, Counseling, and Preventive Care

Preventive healthcare through health education, anticipatory guidance, and participation in screening and immunization schedules is the mainstay of pediatric public health programs (see Chapter 28 ). Bright Futures, developed by the American Academy of Pediatrics and their collaborators and supported by the Maternal and Child Health Bureau, Health Resources and Services Administration, provides a knowledge base for pediatric healthcare providers and the public about anticipatory guidance, health promotion, and prevention for children and adolescents, but it has few references to disability. Anticipatory guidance refers to general information related to growth/development and healthy practices. Counseling refers to advice given regarding specific conditions, which could include discussions of applications of general guidance to children with disabilities. For the general population, 25% of parents receive no information and <50% receive all recommended guidance. Although parents of children with special healthcare needs (the broad inclusive definition of disabilities) report similar or better receipt of general preventive information, it is not clear whether those with higher severity of functional limitations receive this guidance or counseling, and whether it is provided in the context of disability and other circumstances.

Children with special healthcare needs require typical prevention, as well as more specific counseling related to their disability. Some of this more specific counseling can be managed by specialty care providers, although children with special healthcare needs have difficulty obtaining appropriate specialty outpatient services. Additional barriers to care, especially with increasing age of the child, are the lack of accessible medical equipment and facilities. Although discussions of health risks with adolescents about smoking, drinking, and protected sexual activity should be undertaken, the discussions may require a different focus for adolescents with disabilities. Higher violence and abuse rates toward children with disabilities are reported, for which providers must be vigilant.

The recommendation is to recognize the need for modifications to typical guidance, to be alert for any signs of violence, and to broaden counseling to include questions and discussions about conditions associated with the specific disabilities (e.g., epilepsy or cognitive impairments often seen with cerebral palsy, or neurogenic bladder and bowel in spinal cord dysfunction) or secondary conditions, such as pain, osteoporosis/fractures, or fatigue seen in many children and adolescents with disabilities.

Physical Activity and Exercise

National health guidelines recommend at least 60 min of physical activity daily for children, but any activity increase from sedentary levels to even moderate activity (30-40 min of moderate intensity or 20 min of more strenuous activity) provides some health benefit. Health professionals should give specific advice about how children with disability can increase their level of activity. Exercise and activity increase aerobic capacity, functional ability, and quality of life for children with many kinds of disabilities and chronic diseases (e.g., cerebral palsy, spinal cord dysfunction, cystic fibrosis, asthma, intellectual disabilities, diabetes). And yet, most healthcare providers expect sedentary lifestyles for children and adolescents with disabilities, whatever their functional abilities. For children with disabilities, school physical education and recess programs can support activities at or greater than the recommendation, and school requirements can reinforce activity expectations. The need for exercise beyond physical therapy should be clarified to help children understand the benefits and purpose of both. The activities in which youth with disabilities wish to participate can be supported. Children with disabilities who participate in physical activities report social benefits, such as developing friendships, building a support system, gaining knowledge of self, and acquiring a sense of accomplishment. These factors also contribute to higher adherence to activities. Children with disabilities may also be more likely to participate in physical activities when those activities are supervised and organized, as opposed to free play in an open room. In order for children with disabilities to engage in physical activity in supported environments, school and public playgrounds must be made sufficiently accessible to support community physical activity. A number of agencies have endorsed the Commit to Inclusion campaign to promote building healthy, inclusive communities for people of all ages with disability (e.g., the President's Council on Fitness, Sports and Nutrition, along with the National Center on Health, Physical Activity and Disability, the American Association on Health and Disability, and the Center on Disability at the Public Health Institute).

Physical activity for children and adolescents improves fitness and quality of life for youth with developmental disabilities (Table 734.2 ). These exercise and fitness programs require 2-3 mo of participation, at least twice a week, to achieve any changes, and many of the changes achieved are more-longer lasting than expected. These programs are not traditional therapy, and participation in therapy is not a substitute. These focused fitness and exercise programs generally require the support and direction of rehabilitation professionals, although programs can be community based in nonmedical surroundings.

Table 734.2

Examples of Effective Exercise Programs for Children With Disabilities

PROGRAM	DESCRIPTION	OUTCOMES/COMMENTS
Center-based fitness program and home program*	Children with a variety of disabilities Group exercise: 2×/wk for 14 wk; warm-up, aerobics, strengthening, cool-down Home program: 2×/wk for 12 wk using video exercises	Improved walking efficiency, strength, general function Group treatment more effective by measures and by satisfaction
Group aquatics aerobic exercise program †	Children with a variety of disabilities, >50% able to walk 2×/wk for 14 wk Recreation to achieve target heart rate; aquatic strengthening program	Improved walk/run, not strength to isometric testing Required adults monitoring to maintain target heart rates
Group training class ‡	Children with cerebral palsy able to walk 2×/wk for 4 wk Warm-up, circuit training stations (treadmill, balance, stairs, closed-chain exercises)	Improved muscle strength, mobility, function except fine-motor test–maintained 8 wk later Therapists conducted and monitored
Strength training §	Children with cerebral palsy, including a majority able to walk with assistive devices 3×/wk for 6 wk Progressive strength training program, conducted in the home	Improved perceptions of strength, walking, stair management and improved psychologic benefits Clinicians to monitor, problem solve; some need for direct parental involvement
Walking–jogging program ‖	Children with Down syndrome 3×/wk for 10 wk 30 min sessions, achieving 65–70% peak heart rate	Difficulty promoting increasing activity intensity Improved peak exercise time and grade, but not in aerobic capacity; improved walking capacity
Treadmill training program ¶	Children with intellectual disabilities Daily for 2 mo Progressive treadmill use with goal of 20-30 min	Improved heart rate with and without activities Therapist developed and monitored, community staff implemented
Peer-guided exercise**	Adolescents with intellectual disabilities 2×/wk for 15 wk Typical adolescents and those with disabilities paired to support each other in 1 hr aerobic, weight-training, flexibility activities	Improved curl-ups, 6 min walk, and body mass index High attendance, less compliance with weight training

^* Fragala-Pinkham MA, Haley SM, Rabin J, Kharasch VS. A fitness program for children with disabilities. PhysTher 85(11):1182–1200, 2005.

^† Fragala-Pinkham M, Haley SM, O'Neil ME. Group aquatic aerobic exercise for children with disabilities. Dev Med Child Neurol 50(11):822–827, 2008.

^‡ Blundell SW, Shepherd RB, Dean CM, Adams RD, Cahill BM. Functional strength training in cerebral palsy: a pilot study of a group circuit training class for children aged 4-8 years. ClinRehabil 17(1):48–57, 2003.

^§ McBurney H, Taylor NF, Dodd KJ, Graham HK. A qualitative analysis of the benefits of strength training for young people with cerebral palsy. Dev Med Child Neurol 45(10):658–663, 2003.

^‖ Millar AL, Fernhall B, Burkett LN. Effects of aerobic training in adolescents with Down syndrome. Med Sci Sports Exerc 25(2):270–274, 1993.

^¶ Lotan M, Isakov E, Kessel S, Merrick J. Physical fitness and functional ability of children with intellectual disability: effects of a short-term daily treadmill intervention. ScientificWorldJournal 4:449–457, 2004.

^** Stanish HI, Temple VA. Efficacy of a peer-guided exercise programme for adolescents with intellectual disability. J Appl Res Intellect Disabil 25(4):319–328, 2012.

Recreation and organized sports are other areas where children and adolescents with disabilities can engage successfully, at times with modifications. Participation improves cardiopulmonary parameters, motor function, social competence, and general sense of well-being. Many children with disabilities require 1-on-1 instruction for development of skills, with a goal of participation in activities with their peers. Perceived barriers to participation in sports differ based on the source: children were concerned about dependency; parents required more information about possible sport participation; professionals noted family's attitudes carried great influence. Programs through Special Olympics International are an opportunity for children and adolescents to engage in supportive and monitored environments for sport and recreation.

Rehabilitation professionals can assist with problem-solving activity participation, such as using computerized technologies for “exergaming” (e.g., Wii, Xbox, PlayStation), developing individual or group challenges with mobile devices (e.g., activity trackers such as FitBit, mobile phone apps), adaptation of equipment (e.g., modified upper-limb prosthesis to allow baseball glove use or modified bicycle equipment), and knowledge of adapted recreation programs in the area (e.g., horseback riding, winter/water sports) to increase participation.

Nutrition and Obesity

See also Chapter 60 .

Managing the combination of nutrition and physical activity is the key ingredient of weight control. Obesity also affects children with special needs. Estimates suggest that children with physical activity limitations were twice as likely as the general population to be overweight, and youth with cognitive impairments are at increased risk. It is unclear if obesity is a cause for the activity limitations or is a result of the limited activity, which may be an important distinction in developing interventions. The concern with obesity contrasts with early life weight gain needs of many children with disabilities, and may be confusing for parents and families when the focus changes to weight decrease. Confounding factors related to monitoring percent body fat in children with disability include (1) the propensity for some disabilities, often those that are genetically mediated, to be associated with obesity; (2) standards of measurement may not be appropriate for certain diagnoses or disability types (e.g., expected body composition differences, short statures, contractures, or limb deficiencies or amputations); (3) obesity may be a side effect of medication and this effect must be balanced against the drug benefits (e.g., antidepressants, mood stabilizers, steroids); and (4) the social network of family, friends, schools, and healthcare providers may unwittingly influence healthy habits in a negative way, including use of food as reward for behavior management. Both children and their parents should be a part of the conversations related to obesity or any weight-related topic. Information must be presented in a direct and understandable way, and modified for the child's and parents’ needs. Discussion of promoting health through nutrition and physical activity, while problem solving challenges to participation, may be a better approach than explaining body composition and metabolic pathways.

Emotional Health and Leisure Activities

Emotional health is often overlooked in children with disabilities, unless mental health or challenging behaviors are the cause for the disability. Youth and adolescents with disabilities appear to be at higher risk for feeling low, stressed, or anxious (especially those with higher levels of limitations), and those with mental health needs may have lower adaptive functioning, a family history of mental illness, or a diagnosis of autism spectrum disorder. Adolescents with physical disabilities participate in fewer social activities, have fewer close or intimate friends, and have few plans for ongoing education. There is a risk for continued isolation into adulthood. Medications may be considered, but effectiveness is not guaranteed, and unwanted side effects may produce more health conditions. Counseling requires insurance support or discretionary funding.

Leisure and recreational activities provide social supports, additional stress-coping mechanisms, and ability to develop social skills and a stronger personal identity. Girls with disabilities tend to engage in social or skill-based activities, and boys in physical activities, with decreasing participation with increasing age. In general, encouraging socialization through leisure activities, recreation, or sports and physical activity can be a part of a routine health visit.

Dental Care

Dental care is a frequently unmet healthcare need for children with disabilities. The principal deficits are in receipt of further or specific dental care (not preventive services) and that the severity of the condition and low income may be associated with unmet dental needs. Condition severity may also predict the degree to which parents are interested in oral health–related education and actually engage in oral health efforts. Challenging behaviors often limit dental care, and the use of behavior management techniques and education programs have been effective in allowing both preventive and additional dental care.

Role of Healthcare Providers

Primary care and other healthcare providers should be mindful of discussing and promoting health and healthy behaviors with children and adolescents with disabilities and their families (Table 734.3 ). Once initial discussions have ensued, referral to healthcare professionals with expertise in modifications needed for a more tailored approach to health promotion may be indicated.

Table 734.3

Targeting Healthy Behaviors for Children With Disabilities

HEALTH ACTIVITY TARGET	RELEVANCE TO CHILDREN WITH DISABILITIES
General prevention	• Recognize risks for less healthy behaviors, and barriers and facilitators about behavior changes and participation. • Cover typical topics for all children; counsel regarding disability or situation context. • Specifically monitor for abuse and violence. • Provide typical age-appropriate adolescent information about smoking, drinking, substance abuse, sexual contacts; refer if unable to provide. • Monitor for disability-specific health conditions; may require referral.
Physical activity	• Promote exercise and activity—should be an expectation for activity. • Ensure that family and child/adolescent are knowledgeable about benefits and possible adaptation. • Review need for possible dietary changes. • Consider engaging rehabilitation professionals.
Nutrition and obesity	• Recognize obesity can cause limitations, and can be the result of poor dietary habits and limited activity. • Follow percent body fat in a consistent way, recognizing the need for accurate measures or limitations of measures (e.g., weight, BMI, skinfold thickness, other traditional measures) in many disability conditions. • Ensure that family and child/adolescent are knowledgeable about healthy nutrition. • Consider referral to nutritionist or other professional to engage patient and family in modeling/direction or behavior suggestions. • Review need for increased activity level with dietary changes.
Emotional health	• Question for sense of anxiety/feeling low, stress management and ability to adapt, social supports. • Consider medications and counseling based on expected effect, monitor effects/side effects; consider referral, making sure that insurance/payment coverage is available. • Consider recreation and leisure activities to promote social support and ability to develop social skills.
Recreation and leisure	• Question about social activities outside the home; promote importance for development of social skills, sense of self, support. • Consider referral to community programs or rehabilitation professionals.
Dental	• Discuss more than preventive dental care. • Suggest behavior strategies if there are problems engaging in dental appointments and refer for this service as needed.

734.1

Home Mechanical Ventilation and Technology Dependence

Robert J. Graham

Keywords

• home mechanical ventilation
• children with special healthcare needs
• technology dependence
• medical home
• quality of life
• chronic illness

See also Chapter 446.4 .

Children with technology dependence represent a particularly complex and potentially vulnerable cohort of children with special healthcare needs (CSHCN).

Following the decision to pursue technology supports for a child, the reality of homecare is daunting. This chapter, coupled with that on Long-term Ventilation (see Chapter 446.4 ), provides an approach when considering provisions for the CSHCN and their families.

Preparation

There are emotional challenges associated with integration of technology supports into “routine” care and assuming an altered role as a parent and care provider. Addressing practical needs, however, can help attenuate some of the anxiety, as well as allow families to focus on, or revisit, the global goals of care, quality of life, and the role of technology. The family will need to consider each of the following implications.

• Financial (e.g., insurance, subsidies, alternative funding, and parental employment): Independent of personal resources, the majority of families with children requiring technology assistance report some degree of financial burden. These costs arise from the direct outlay for equipment and medications, lost work-time or need to discontinue/change vocations, home adaptations, and other indirect costs. Accessing a financial counselor or case manager may help identify and navigate through local, state, and federal resources. Additional considerations should also be paid to personal trusts, wills, and estate planning, as all of these have implications for long-term benefits and financial supports for the individual with special healthcare needs.
• Equipment and supplies: Ideally the equipment intended for use at home will be tested before discharge to home. Testing ensures proper function as well as any tolerance. Electrical compatibility with the home service should be confirmed. Delivery of backup devices (e.g., tracheostomy tubes including a smaller size for contingency planning, batteries for ventilators, and portable oxygen tanks to supplement electric oxygen concentrators) as well as emergency supplies (e.g., self-inflating respiratory bags, epinephrine for those who have allergy histories, or prophylactic antiepileptic medication for those prone to breakthrough seizures) should be confirmed. Medication supplies and refills should be sufficient to allow for the scheduling of follow-up visits. Providers responsible for recertification or reordering should be identified.
• Training: Standards for training and demonstration of competency varies between institutions and across providers. Families and their medical teams should come to an agreement on minimum safety preparation and the number of responsible parties available to assist in the home. Hospital-based training around ventilator use and troubleshooting, central-line care, tracheostomy tube exchanges and suctioning, wound care, and other interventions could include basic life support classes, 1-on-1 sessions with nurses, respiratory therapists, or other staff, with hands-on or mannequin simulation. Assumption of full care by families while in the hospital can be informative for all stakeholders and reassuring to families; supported replication of the demands of homecare before discharge is ideal.
• Augmented staff: Home nursing, hospice, personal care assistants, extended family, and friends represent additional resources for the child and their family. Allowances vary based upon the child's age, independence, medical condition, technology dependence, goals of care, and other factors. These individuals may require additional training, but augmenting numbers of proficient homecare providers is crucial for safety and consistency of care. When considering homecare provision, families should consider the type of personnel and how additional supports would allow the child to attend school, the parent to work or maintain the household, continue care when the parent is sick or incapacitated, or assist with other children.
• Monitoring: Continuous direct observation is not practical, or often desirable, in the community setting. Providers and families should agree upon the balance of extrinsic monitoring (e.g., pulse oximetry and heart rate) and intrinsic device alarms (e.g., high and low minute ventilation, disconnect, and pressure ranges on a ventilator), based on the child's individual risks as well as the environmental circumstances. Typically capnography is not available except in cases of central hypoventilation syndromes, but can complement oximetry. Simple audio and video monitors can be used to augment surveillance and may help families in their activities of daily living. Alarm fatigue, as experienced by hospital-based providers, should also be discussed, as it can be of great consequence where the resources are not as robust.
• Adaptations to the homecare setting: Modifications to the home may be required to ease care and optimize safety. Ramps for wheelchair access will permit ingress and egress, and lift systems can minimize physical burden and injury risk to providers. Doorways can be expanded to permit access to multiple rooms, and alternative bath and toileting accommodations may be needed. Electrical system upgrades with grounding and increased amperage may be required for some equipment.
• Transportation: Discharge planning for a child with technology dependence should include transportation to school, community programs, routine family activities, and scheduled or urgent medical services. Proximity (rural or urban), the child's mobility, weather, and the need for monitoring en route are other considerations. Adaptive car seats or car beds can be purchased. Personal vehicles may need expensive modifications, including lifts and power inverters. Allowances may also be required for one person to drive while another, nurse, parent, or care assistant, tends to the child. If traveling long distances, perhaps on vacation, advanced planning might include identification of hospitals along the route and reciprocal equipment companies to assist with unexpected supply needs.
• Air transportation: If a family anticipates travel by plane, contingencies should be made for oxygen support at altitude, recognizing that most commercial airlines pressurize their cabins to the equivalent of 7,000 to 8,000 feet. Portable oxygen sources may have less liter flow capacity than stationary or home devices. Space and limited supplies inflight are also considerations. Power wheelchairs are prone to damage when placed in cargo holds, and ground crews likely require explicit instructions. Providers may need to write letters for airport security and airlines for excess baggage, electronic equipment, medication, and fluid allowance. Families can also consider sending additional supplies to the final destination in advance.
• Environmental stressors: Extreme temperatures, heat or cold, variability in humidity, and other environmental variables can greatly impact the well-being of a child with underlying cardiorespiratory insufficiency or other special healthcare needs. Home adaptations to permit climate control for the child's room may be required. Families may consider prewarming, or cooling, vehicles for routine excursions, and limitations on day-to-day activities are warranted at times. Augmented hydration needs should be reviewed with medical providers, along with routine sunscreen and preventative measures.

Preparation for transition to the homecare setting may include a period of quiescence, depending upon the circumstances and family preferences. Establishing a period of stability, when there has been no need to alter in supports, may minimize unplanned readmissions.

Community Resources

The transition from the acute care or rehabilitation facility to homecare setting is often much anticipated and welcomed. This step can also be frightening and overwhelming, whether it represents the first time home or a return after an acute illness or planned surgery. Hospital-based providers can partner with families to alleviate some anxiety as well as avoid potential pitfalls through proactive engagement. Hand-off to outpatient and community stakeholders can include the following:

• The community medical practice: Updates on problem lists, projected follow-up, medication and equipment needs, routine health maintenance and preventative measures (e.g., immunizations), special considerations for nutrition, identification of specialty providers and follow-up schedules, and case-specific risks.
• First responders: Confirmation that the family has capacity to call emergency services, outreach to police and ambulance services to outline baseline needs, special condition-specific interventions or precautions, identification of equipment that may need to be taken with the child in the event of an emergency, determination of emergency destination (i.e., local hospital or referral center), and clarification of resuscitation status and life-sustaining therapies.
• Therapy programs: Physical, occupational, speech-language/feeding, and other therapists benefit from hospital-based assessments as well as outlines of expectations, restrictions, and uncertainties.
• Educational programs/schools/day-habilitation: Integration into community services requires evaluation of developmental needs as well as potential adaptive settings, equipment, services, staffing, transportation, and services for all ages.
• Power and water: Alerting local housing, social, power, and water authorities to medical necessities can facilitate prioritization of service restoration during natural disasters or other interruptions, as well as identify programs to defray incurred costs with increased technology driven electrical usage (e.g., home ventilators, oxygen concentrators, and climate control).

Families may find additional resources through faith-based institutions, nonprofit and advocacy groups (e.g., Kiwanas, Shriners, Boy Scouts), and condition-specific entities, such as the Muscular Dystrophy Association. Outreach to other families with similar circumstances can also be helpful with the caveat that their recommendations reflect their own goals and lived experience with special healthcare needs.

Subacute Care

Local resources for medical services should be identified in advance. These begin with the primary care and extend to local and regional hospitals. It is important to determine the range of services available as well as to identify specific providers who would familiarize themselves with a given case. The child with technology dependence will experience intercurrent illnesses or unexpected accidents that require evaluation, but may not always necessitate transport to tertiary care or referral centers. Individual care plans can be developed in conjunction with the family and local providers and may include thresholds for transfer.

Families should also consider bringing home equipment and supplies when presenting to urgent and acute care settings. Devices, such as biphasic positive airway pressure (BiPAP) masks and cough assist machines, or compounded medications may not be available at every facility. Short-term evaluations may become protracted, and lack of routine care provision may compound the immediate issues.

Emergency and Acute Care

Providers and families should acknowledge that CSHCN are at risk for repeated hospitalization. Progression of underlying illnesses (e.g., heart failure), planned surgical interventions (e.g., spinal instrumentation, bronchoscopy surveillance, tendon releases), or superimposed acute illnesses (e.g., pneumonia, gastroenteritis, appendicitis, recurrent seizures) may necessitate readmission. Those children who are technology dependent have a higher likelihood of requiring critical care services due to the nature of their needs as well as their vulnerability. Preventable equipment-related issues may be obviated through the planning described previously. Once hospitalized, CSHCN are at greater risk of medical error and incur more interventions when compared with otherwise healthy children. Parents should be encouraged to develop a medical passport and reference list of providers to facilitate communication and consistency of care. Referencing established care guidelines and, again, developing individualized care plans may be helpful.

Quality of Life

CSHCN of increasing complexity and technology dependence are thriving in the homecare setting due to advances in medical care, shared decision-making, community services, and most notably, extensive, vigilant, and proactive care efforts by their families. Adaptations allow for participation in all aspects of family, school, and community activities. While individual trajectory and subsequent needs may be difficult to predict, all stakeholders should acknowledge the impact of chronic care on the family unit and health-related quality of life. The evolution of a medical home for this cohort of children will require provisions for family mental health, sibling supports, respite, and other measures to optimize outcomes.

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