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Children and youth with special health care needs

Children and youth with special health care needs
Literature review current through: Jan 2024.
This topic last updated: Jul 25, 2023.

INTRODUCTION — Children and youth with special health care needs (CYSHCN) are those who have or are at increased risk of developing a chronic condition and require services beyond that usually required by children. (See 'Terminology' below.)

A broad range of conditions can result in special health care needs. Examples include problems such as cystic fibrosis, asthma, diabetes mellitus, food allergy, sickle cell disease, juvenile idiopathic arthritis, genetic disorders, myelomeningocele, neuromuscular disease, epilepsy, congenital heart disease, trauma-related injury, and human immunodeficiency virus (HIV), as well as disorders of speech, language, learning, and behavior.

This topic will provide an overview of aspects of care that are relevant to all CYSHCN – regardless of their underlying condition. The management of specific conditions that result in special health care needs is discussed in individual topic reviews (eg, cystic fibrosis, autism spectrum disorder).

TERMINOLOGY

Children and youth with special health care needs (CYSHCN) – Children and youth <21 years who have or are at increased risk of developing a chronic physical, developmental, behavioral, or emotional condition and require health and related services of a type or amount beyond that usually required by children [1].

Disability – An umbrella term that encompasses dysfunction at the level of the body or body part (ie, impairment), whole person (ie, activity limitation or disability), or of the whole person in the social context (ie, participation restriction or handicap) [2,3]. Disability is influenced by environmental and personal contextual factors (eg, access to resources, health service use, etc).

Medically complex – A subset of CYSHCN who have multiple significant chronic health problems that affect multiple organ systems and limit function, and often requires the care of an array of community- and hospital-based providers and medical technology [2,4].

To be considered as having a complex medical condition in the National Survey of Children's Health (NSCH), a child must meet the following criteria [5]:

Positive response to the NSCH screener question indicating need or use of more medical care, mental health, or educational services than is usual for most children of the same age

Positive response to at least three of the remaining four NSCH screener questions:

-Need for prescribed medicines

-Functional limitation

-Need for physical, occupational, or speech therapy

-Presence of emotional, developmental, or behavioral problems

Visit to at least two specialists in the previous year

Technology dependent/assisted – A subset of CYSHCN who use technology temporarily or permanently to compensate for loss of function or activity [2,6]; examples of technology include mechanical ventilation, wheelchairs, facilitated communication, and feeding tubes.

EPIDEMIOLOGY — The prevalence of special health care needs among children is difficult to determine given the wide spectrum of conditions meeting the definition. Data from the 2020-2021 National Survey of Children's Health (NSCH) indicate that 19.5 percent of children <18 years of age in the United States (more than 14 million children) have special health care needs [7]. In the 2016-2019 NSCH, approximately 25 percent of CYSHCN had functional limitations and 19 percent reported that daily activities were consistently affected [8]. Although children with medical complexity represent just 1 percent of children in the United States, they represent as much as one-third of the total expenditure for health care on children [9].

In the 2020-2021 NSCH, the estimated prevalence of caregiver-reported receipt of services for developmental needs in children age 3 through 17 years was 7.9 percent [10]. The prevalence of caregiver-reported services for developmental needs was greater among males than females (10.4 versus 5.3 percent).

TYPES OF SPECIAL NEEDS — CYSHCN require a variety of health and related services depending upon their chronic condition. These needs often are unmet or unrecognized, particularly among CYSHCN with more severe limitations [11-20]. Care coordination provided within a medical home model of care helps to address unmet needs for CYSHCN and their families [11,21-24]. (See 'Framework of care' below and 'Care coordination' below.)

Special needs and services for CYSHCN may include, but are not limited to:

Prescriptions.

Rehabilitative therapies (eg, occupational therapy, physical therapy, speech therapy) [25].

Assistive devices/medical technology/durable medical equipment (eg, wheelchair, insulin pump, supplemental oxygen, orthotics).

Vision care and/or eyeglasses [26].

Hearing care and/or hearing aid(s).

Diapers and other home hygiene supplies (bathing systems, catheters).

Preventive dental care and dental treatment – The American Academy of Pediatric Dentistry recommends at least twice yearly dental check-ups for most children, including CYSHCN. Pediatric dentists have advanced training that focuses on care for CYSHCN and are preferred if available. (See "Oral and systemic health" and "Preventive dental care and counseling for infants and young children".)

Home health care services (home health aides/home nursing).

Nutrition therapies (eg, feeding tubes, speech/swallowing therapy) or special diets [27]. (See "Cerebral palsy: Overview of management and prognosis", section on 'Growth and nutrition'.)

Referrals for specialty medical services, educational services, or social services.

Behavioral or mental health care [28].

Respite or hospice care.

Family mental health counseling and family therapy.

Transportation – Safe transportation of CYSHCN is discussed separately. (See "Promoting safety in children with disabilities", section on 'Safe transportation'.)

Guardianship, power of attorney, and/or support for transition to adult services.

PSYCHOSOCIAL AND ECONOMIC CONSEQUENCES — Having a child with chronic illness affects family life and the wellbeing of family members [29-31]. Home nursing, therapy, or special equipment may alter the home environment. The amount of time required for health care visits, therapies, and hospitalizations may result in social isolation from friends and extended family [32,33]. Caregivers may have difficulty finding time to devote to the siblings of the chronically ill child. Families of CYSHCN also may have increased levels of stress, family discord (including divorce), and added pressures on typically developing siblings [34-36].

Having a child with chronic illness also may have economic consequences [33,37-39]. Families with children who have disabilities or chronic illness appear to have more financial difficulties than families with children who do not have special health needs [40]. Children with chronic conditions have greater health needs and greater costs, which are directly related to severity [41-47].

CYSHCN are more likely than children without special needs to have public insurance (eg, Medicaid) to cover their health care needs. Some have dual insurance coverage, with public insurance supplementing commercial insurance [48,49]. Commercial insurance policies alone may have inadequate depth and breadth of coverage for services such as home health care, medical equipment, or additional therapies (eg, physical, occupational, speech therapies). They also may have high deductibles and copayments or a lifetime ceiling on benefits. Caregivers may need to pay out of pocket for medications, equipment, services, and/or therapy not fully covered by their commercial insurance [41,50-52].

Among families of CYSHCN, caregivers of children with activity limitations are significantly less likely to work, and, when employed, work fewer hours than caregivers of children without activity limitations [40,53,54]. The potential for career advancement for caregivers may be limited geographically by the need to maintain a therapeutic relationship with the child's health care providers and needed services and appointments.

FRAMEWORK OF CARE — The framework of care for CYSHCN below is based upon the Maternal and Child Health Bureau (MCHB) Blueprint for Change [55,56]. The MCHB Blueprint emphasizes four critical areas for a well-functioning system: health equity, family and child well-being and quality of life, access to services, and financing of services [56].

The goal is that CYSHCN enjoy a full life, from childhood to adulthood, and thrive in systems that support their families and their social, health, and emotional needs and ensure dignity, autonomy, independence, and active participation in their communities [56].

The MCHB Blueprint assumes that [56]:

Disability is part of the human experience and does not diminish an individual's right to participate in or contribute to society.

Racism is a social risk factor that profoundly affects the health of children, adolescents, young adults, and their families.

Although CYSHCN require more and different types of services than children without special health care needs, existing systems do not ensure access to these services, especially for CYSHCN affected by discrimination and poverty.

CYSHCN are more severely affected by the adverse effects of social determinants of health and inequities than children without special health care needs.

The MCHB Blueprint affirms six previously defined components of a well-functioning system [56]:

Medical home

Family partnership

Early and continuous screening

Coordinated services

Adequate insurance

Health care transition

CYSHCN, and particularly children with medical complexity, depend on a range of medical and community-based services to thrive. Care mapping is a tool that is utilized to depict the range of services needed for a child [2,57]. A guide for care mapping is available through Boston Children's Hospital. It is essential that the approach to care is integrated and coordinated, addressing psychosocial determinants of health for the CYSHCN and their family and building family resilience [31].

Medical home — Optimal health care for CYSHCN seeks to maximize health, development, and family functioning and to prevent critical medical and health events to the extent possible [2]. The medical home is the foundation for optimal health care. It is a model of care centered on shared responsibility with the family and the community for the complete care of the child. The medical home provides medical care that is [58-61]:

Accessible, using a community-based team if possible

Continuously available

Patient- and family-centered

Culturally sensitive

Comprehensive (ie, includes primary, preventive, and specialty care)

Coordinated across time and the continuum of care

The benefits of a medical home for CYSHCN include streamlined care, efficient use of resources, decreased out-of-pocket expenditures, expanded expertise and competence for the involved providers, establishment of a forum for problem solving, and improved satisfaction for the patient, family, and provider [62-66]. The medical home also provides an effective model for implementing successful transitions for CYSHCN [67]. Transition planning includes both transition to adult-oriented systems and transition from inpatient to outpatient settings [68,69]. (See 'Transition planning' below.)

The primary care provider often directs the medical home, but the location may vary depending upon medical complexity, clinical experience, and availability of resources. As examples, for a child with cystic fibrosis, the medical home may be the hospital-based pulmonary clinic; for a child with lymphoma, the medical home may be the oncology clinic.

Practices typically need to implement specific tools and processes to effectively care for CYSHCN (eg, population registries, designated care coordinators, a quality improvement culture, family partnerships) [70]. The National Resource Center for Patient/Family-Centered Medical Home provides information and resources related to establishing a medical home for CYSHCN.

Patient- and family-centered care — Provision of patient- and family-centered care is a core principle of caring for CYSHCN. Patient and family-centered care focuses on the individuality and personality of the child, family needs, and the concerns of health care and service providers with whom the child interacts [53,71]. The family is understood to be the child's primary strength and support and is a full and equal partner in shared decision making [2,72-75]. Working with caregivers in authentic partnerships helps them to navigate the health care system.

Features of patient- and family-centered care include [71,73]:

Providing information that is open, objective, and unbiased so families can effectively participate in care

Recognizing families as the center of their child's health care and allowing them to set goals for care planning and the future

Respect for and honoring differences (eg, cultural, language, care preferences values, beliefs)

Collaborating to make medical decisions that best fit the needs, strengths, values, and abilities of all involved parties; the family is included in these decisions at the level of their choosing

Negotiation of desired outcomes of care

Reflection of the child in the context of their family, home, school, and daily activities and consideration of the child's quality of life within their community

Flexibility in policies, procedures, and practices so services can be tailored to the needs, beliefs, and cultural values of each child and family

Recognition and promotion of the strengths of children and families to empower them to participate in health care choices and decisions

Practice transformation supported by team-based care and quality improvement benefits from family partners in the office setting. The National Institute for Children's Healthcare Quality has published a guide to help recruit and train parent/caregiver partners [76]. The Institute for Patient and Family Centered Care provides guidelines for implementing and maintaining patient- and family-centered care in primary care or ambulatory practice setting [77]. Additional information and resources related to shared decision-making for children with disabilities are provided in the supplementary data for reference [74].

Primary and preventive care — Although the components of routine health care maintenance are similar for CYSHCN and children without special needs, CYSHCN may need to be seen more frequently and may need more frequent screening for certain conditions. In addition, CYSHCN often develop acute intercurrent illnesses that must be distinguished from acute manifestations of their chronic condition and treated appropriately.

Office and practice accommodations that may ease care for CYSHCN include availability of home visits, longer appointments, previsit preparation and planning [78], and examination rooms large enough for the child, family, caregiver(s), and any necessary equipment [30,79]. Team-based care, incorporating designated office staff, family members, and community partners, is essential for successful assessment of needs and care integration [80].

Routine health care maintenance — Routine health care maintenance is as important for CYSHCN as treatment for the chronic condition [81-84]. The management of specific conditions that result in special health care needs is discussed in individual topic reviews (eg, Down syndrome, Turner syndrome). (See 'Special populations' below.)

Routine health care maintenance includes [85]:

Immunizations CYSHCN should receive immunizations as recommended by the Advisory Committee on Immunization Practices in the United States or according to their country’s recommended schedule. (See "Standard immunizations for children and adolescents: Overview", section on 'Routine schedule'.)

Screening and surveillance – CYSHCN undergo routine screening as recommended for children without special needs, including developmental surveillance and screening and postpartum depression screening. (See "Screening tests in children and adolescents", section on 'Common screening tests in pediatrics' and "Postpartum unipolar major depression: Epidemiology, clinical features, assessment, and diagnosis", section on 'Screening'.)

It is particularly important to screen CYSHCN for:

Vision and hearing impairment (See "Vision screening and assessment in infants and children", section on 'Vision assessment in children with special health care needs' and "Hearing loss in children: Screening and evaluation".)

Developmental problems – CYSHCN are at increased risk for developmental problems. Routine developmental surveillance and age- or concern-based developmental screening are recommended. (See "Developmental-behavioral surveillance and screening in primary care".)

Behavior and mental health problems – CYSHCN should be screened at least annually for behavioral or mental health problems and referred to mental health specialists for further evaluation, counseling, or therapy as indicated [86]. Although most CYSHCN do not have serious mental health problems, the rate of psychological difficulties is greater among children with chronic conditions than among their peers without chronic conditions, particularly in adolescents [28,87-89]. Similar to children and youth without special health care needs, CYSHCN benefit from behavioral health integration [31,90]. (See "Developmental-behavioral surveillance and screening in primary care", section on 'Approach to screening'.)

Maltreatment and neglect – Children with disabilities, particularly those with intellectual disability, mental/behavioral problems, and conduct disorder, are at greater risk of physical and sexual abuse than children without disabilities [69,91-93]. Abuse or neglect may have contributed to the disability for some children.

Health care providers should monitor CYSHCN for signs or symptoms of child abuse and refer the child for appropriate treatment if indicated. (See "Physical child abuse: Recognition".)

Acknowledging family strengths, addressing family stressors, offering support and assistance with parenting skills, and helping caregivers to obtain home health or respite care services may help to prevent maltreatment [92].

Social determinants of health – Screening for social and structural determinants of health can assist in appropriate resource allocation and ensure that patient and family needs are met [94-97]. (See 'Types of special needs' above.)

Dental care – CYSHCN should receive routine dental screening and fluoride varnish application in accordance with Bright Future Guidelines. CYSHCN have greater unmet needs for dental care than children and youth without special health care needs [98,99]. The American Academy of Pediatric Dentistry provides guidelines on management of dental patients with special health care needs [100], including guidelines to mitigate disparities in oral health [101].

Anticipatory guidance – In addition to routine age-appropriate anticipatory guidance for children without special needs, anticipatory guidance for CYSHCN includes [102-105]:

Preparing the family for how the illness may affect the child's development, behavior, ability to perform activities of daily living, and family life.

Preparing children for the possibility of illness exacerbation or relapse, changes in treatment, or upcoming procedures. CYSHCN are at greater risk for infectious illnesses, increased duration of illness, noninfectious complications (eg, metabolic problems), adverse drug reactions, and drug errors than children and youth without special health care needs [105,106].

Encouraging participation in developmentally age-appropriate activities, such as attendance at school and the development of relationships with peers. To the extent allowed by their condition, CYSHCN should follow the same rules of behavior and be disciplined in the same way as their siblings.

Encouraging activities (eg, adapted sports and recreation), interests (eg, music, art), and skill development (eg, computer skills) to promote adjustment and acceptance of limitations.

The American Academy of Pediatrics (AAP) provides guidance for promotion of sports, recreation, and physical activity for children and adolescents with disabilities [107].

Encouraging families to prepare a disaster plan and "disaster kit" (eg, a completed Emergency Information Form, batteries, medications, special dietary foods) [108-110].

Encouraging the family to help the child develop self-reliance and assume increasing responsibility for self-care, depending on the degree of disability and the developmental level of the child. (See 'Transition planning' below.)

Siblings of CYSHCN should be monitored for psychosocial functioning, stress, and overall wellbeing as part of the family [111-113]. The Sibling Support Project provides information and resources to optimize functioning and support of siblings of CYSHCN [114,115].

Guiding adolescents and young adults with special needs through puberty and emerging issues of sexuality [116-118]. Like all adolescents, CYSHCN require screening, guidance, and counseling on issues related to sexuality, gender identity, and sexually transmitted infections.

Resources for clinicians and caregivers include:

-The AAP clinical report on healthy sexuality for children and adolescents with disabilities [118]

-The AAP clinical report on sexuality education for children and adolescents, including those with chronic conditions and disabilities [119]

-The Autism Research Centre and American Association on Intellectual and Developmental Disabilities policy statement on sexuality [120]

-The Autism Speaks Autism Treatment Network/Autism Intervention and Research Network on Physical Health (ATN/AIR-P) Puberty and Adolescence Resource

-The Healthy Bodies Toolkit (available in English and Spanish) developed at the Vanderbilt Kennedy Center Leadership Education in Neurodevelopmental Disabilities program

Assessment and referral — CYSHCN, particularly those who are medically complex, require periodic comprehensive assessments to determine individual needs and to ensure physical and mental wellbeing [104]. They may require a variety of services to address all of their needs. Worksheets and checklists can be used to identify specific needs and to formulate plans to address the needs (form 1) [102,104,121,122]. (See 'Types of special needs' above.)

In addition to referrals for specialty care (eg, neurology, gastroenterology), CYSHCN may need referrals for [85,123,124]:

Early intervention or special education services including support for 504 plans or Individualized Education plans [125] (see "Definitions of specific learning disorder and laws pertaining to learning disorders in the United States", section on 'Laws affecting the education of students with disabilities')

Rehabilitative services (eg, physical therapy, speech therapy) [25]

Nutrition

Social work

Individual or family counseling

Home nursing/home health aide services

Behavior therapy

Transportation

Legal support for guardianship and power of attorney when indicated [126]

Palliative or hospice care (see "Pediatric palliative care")

Support and advocacy — Pediatric clinicians can provide support and advocacy for CYSHCN and their families by [31,71]:

Using team-based care strategies to periodically assess the family's coping and stability (eg, by asking if the caregivers have any concerns about finances, health care, schooling, siblings, and relationships) [30,31].

Recommending and encouraging the use of appropriate support and community resources [102,127,128]. (See 'Patient- and family-centered care' above and 'Community-based services and supports' below and 'Resources and support services' below.)

Establishing mechanisms to ensure that family feedback is solicited and incorporated into practice transformation and establishing caregiver partners and family advisory councils.

Ensuring that the child receives educational services to maximize educational abilities [129]. Information about federal, state, and local special education requirements is provided separately. (See "Definitions of specific learning disorder and laws pertaining to learning disorders in the United States" and "Specific learning disorders in children: Role of the primary care provider", section on 'Communicating with the school team'.)

Facilitating connections with other families who are willing to provide caregiver-to-caregiver support.

Providing information about the Family and Medical Leave Act and respite care. (See 'Respite care' below.)

Having proactive discussions about the child's prognosis to determine the family's preferences regarding resuscitation and end-of-life care [30].

Helping them obtain financial support (eg, through Medicaid, Supplemental Security Income (SSI), or Title V) [29]. (See 'Health coverage' below.)

Providing guidance on transition to adulthood including SSI, guardianship, housing, and adult medical providers.

Care coordination — Care coordination is an essential construct within the medical home model, warranting special attention to care planning, team-based care, and supporting the family's goals. Effective care coordination results in the seamless provision of health care across the care continuum (ie, care integration) and is associated with improved quality of life and family outcomes [130-132].

Care coordination is defined by involving the patient and/or family as partners to address the interrelated medical, social, developmental, behavioral, educational, and financial needs of CYSHCN and enhance the family's caregiving capability to achieve optimal health and wellness outcomes for all [24,96,130]. Care coordination encompasses case management (ie, management of a specific disease or process), care planning (ie, a written, detailed step-by-step strategy to achieve the goals of care), and care mapping (ie, a visual portrayal of patient and family needs and strengths, including interactive relationships among team members and resources).

CYSHCN often require the care of multiple health professionals (eg, medical specialists, nurses, dentists, occupational therapists, physical therapists, speech therapists, mental health providers, social workers) [104]. For such patients, it is helpful to have a designated "care coordinator" who is the primary contact for patients, families, home-care, and other service providers [2]. The care coordinator may be the primary care provider, a specialist, nurse, social worker, office staff member, or case manager from the state or tertiary care center where the child receives specialty care [24,53,128,133,134]. The AAP policy statement on care coordination includes resources for clinicians [24].

Care coordination may involve one or more of the following [24,59,85,135-137]:

Development of a care plan and medical summary – A comprehensive written or electronic plan of care developed with the family and patient (if developmentally appropriate) that includes:

Child's or adolescent's and caregivers' goals of care

A problem list

Contact information for all providers

Medication list

Plan for the child's or adolescent's care for the next year

Specialists

Home nursing/home health aide services

Educational supports and plans

Therapy services

Contingency plans for illness and travel

Feeding plans

Durable medical equipment (eg, walker, wheel chair, adaptive seating)

The family and all providers involved in the care of the child or adolescent should receive a copy of the plan each time it is updated. A guideline for developing a shared plan of care for CYSHCN had been published by the Lucile Packard Foundation [138]. A sample medical summary form is available through the National Alliance to Advance Adolescent Health.

Maintaining a current Emergency Information Form. A sample form is available from the American College of Emergency Physicians [108].

Providing referrals and scheduling appointments (eg, for specialists, diagnostic studies, rehabilitative care) and ensuring that patients and families get to needed appointments

Providing letters of medical necessity (eg, for medical equipment, supplies, services, utilities), home nursing/medical day care support

Knowledge of community resources and information

Education and schools and linking families to needed services and equipment (eg, interpretation translation services)

Training/educating caregivers or service providers in the community (eg, how to use medical equipment or technology) and partnering with durable medical equipment providers

Overseeing transitions from hospital to home care and vice-versa and ensuring effective communication in hospital discharge planning and follow-up [30,139,140]

Tools to facilitate care coordination and communication include electronic care plans, electronic medical records that are connected between providers, secure messaging, electronic registries, and secure telehealth mechanisms [2,141].

The AAP National Resource Center for Patient/Family-Centered Medical Home provides tools and resources for care coordination. Boston Children's Hospital Pediatric Care Coordination Curriculum provides guidance for implementing care coordination [142].

Special populations — Professional societies have published clinical guidelines for preventive and comprehensive care for many conditions. Examples of policy statements or clinical reports from the AAP and other professional societies include:

Children with congenital heart disease [143]

Children and youth with spina bifida [144,145]

Children and youth with cerebral palsy [146]

Children with Down syndrome [147]

Children with epilepsy [148]

Children with obesity [149]

Children who require chronic home invasive ventilation [150]

Children with fragile X syndrome [151]

Children with Prader-Willi syndrome [152]

Children with Marfan syndrome [153]

Children with achondroplasia [154]

Health coverage — Health coverage for CYSHCN varies from country to country and, within the United States, from state to state. The information below applies to children in the United States.

Medicaid and Supplemental Security Income – Medicaid or the Children's Health Insurance Program (CHIP) covers some expenses if the family is eligible according to their state's income eligibility criteria. Funding for CHIP varies from state to state and may be severely limited or unavailable in some states.

Some CYSHCN also may be eligible for SSI, which provides Medicaid coverage and a monthly cash stipend to eligible applicants [155]. Eligibility is determined by the state's Disability Determination Service Agency based upon written information provided by the pediatric health care provider (table 1), parents, and others. The Social Security Administration (SSA) considers a child to have a disability if [155]:

The child has a physical or mental impairment that results in marked and severe functional limitations

The condition has lasted, or is expected to last, at least a year or is expected to cause death within a year

Certain medical conditions are "presumptively eligible" for SSI benefits (table 2). Children with these conditions may receive SSI benefits for up to six months during the formal eligibility evaluation. The details of SSI eligibility determination are beyond the scope of this review but are available through the SSA. Parents can visit an SSA office or contact the SSA by phone (1-800-772-1213) to apply for SSI benefits for a disabled child [155].

Title V of the Social Security Act – In some states, Title V of the Social Security Act may serve as the payer of last resort for otherwise uncovered health care services. It varies from state to state and is administered by the Department of Health and Human Services Maternal and Child Health Bureau through state departments of health. State-specific information about Title V is available through the United States Department of Health and Human Services.

COMMUNITY-BASED SERVICES AND SUPPORTS

Home-based services — CYSHCN with complex needs may receive much of their care at home [156]. Home care may be provided by trained professionals or family members. Home-based services may include nursing care; home health aide services; physical, speech and/or occupational therapy; early intervention services; nutrition support; and respiratory support [30]. In the United States, home health services are mandated Medicaid benefits if the treating provider deems them "medically necessary to correct or ameliorate a mental or physical illness or condition" [157,158], but availability may be limited. Training of the home care workforce and supporting/training caregivers of CYSHCN with complex needs fosters their living at home with their families [159].

Home care for CYSHCN requires additional care coordination, family resources, and family support. Primary care clinicians can support families of CYSHCN who receive home care services by [160]:

Asking about unmet needs at home

Acknowledging family efforts and their positive impact (eg, fewer hospitalizations)

Assisting the family in their efforts (eg, by providing necessary documentation for financial assistance, training family members or home health care providers)

Assessing patient needs and goals

Assisting families with letters of medical of necessity for services (eg, home nursing, health aide, medical day care)

Maintaining and updating plans of care with home nursing agencies

School-based services — In the United States, the Individuals with Disabilities Education Act (IDEA) guarantees all children early intervention and school-age education that is suited to their individual needs in the least restrictive environment [125]. The IDEA mandates that CYSHCN receive a multidisciplinary evaluation to determine their eligibility for special education services. IDEA services, eligibility, and procedural safeguards are discussed separately. (See "Definitions of specific learning disorder and laws pertaining to learning disorders in the United States", section on 'Individuals with Disabilities Education Act'.)

Respite care — Caring for a child or adolescent with severe and chronic medical needs can be overwhelming for families. Pediatric clinicians can help families identify local respite care providers through the National Respite Locator service. The family should understand that the cost of respite care programs may not be covered by commercial insurance or government assistance programs.

Palliative and hospice care — Palliative care focuses on improving quality of life and preventing and relieving suffering for patients with life-threatening conditions and their families. It is not limited to patients at the end of life. Palliative and hospice care are discussed separately. (See "Pediatric palliative care".)

TRANSITION PLANNING — Approximately 90 percent of CYSHCN survive into adulthood [161]. The transition to self-sufficiency and adult care providers requires advance planning and coordination [162].

Health care — The goal of the transition to an adult health care provider is to maximize lifelong functioning and potential through the provision of continuous, high-quality, developmentally appropriate health care services as the individual moves from adolescence to adulthood [163].

Successful transition is facilitated through (table 3) [67]:

The identification of a health care professional who assumes responsibility for current care, care coordination, future care planning, and attends to the challenges of transition [163]; the pediatric health care provider should speak directly with the internist or family clinician who will assume care and provide a written copy of the medical summary.

The preparation and maintenance of an up-to-date medical summary that is portable and accessible [69,163]; the summary should include pertinent medical history, surgery, therapies, medications, and immunizations [85]. A sample medical summary form is available through the National Alliance to Advance Adolescent Health Got Transition.

The creation of a written health care transition plan by age fourteen years is optimal [69,163]. The adolescent and family should participate in the formulation of the transition plan; at a minimum, the plan should include the services that need to be provided, identification of who will provide the services and how they will be financed, educational/vocational transition, and who will be responsible for ensuring the services are provided (ie, whether it is the young adult responsible for self-management or a guardian/power of attorney).

The application of the same guidelines for primary and preventive care for all adolescents and young adults, including those with special health care needs. (See "Guidelines for adolescent preventive services", section on 'Comprehensive guidelines for adolescents'.)

A number of resources are available to help health care providers, patients, and families address the transition to adulthood (table 4).

Got Transition provides customizable tools for transitioning youth to adult health care providers, transitioning youth to an adult approach without changing providers, and integrating young adults into adult health care utilizing six core elements of transition.

The American College of Physicians provides a set of disease-specific tools to facilitate the transition of care from pediatric to adult care clinicians.

Self-sufficiency — The adolescent or young adult with special needs may have difficulty making decisions regarding education and vocational choices because of developmental problems or dependence on their family [162]. Pediatric health care providers can prepare their patients for self-sufficiency and independent living by encouraging the patients' caregivers to think about the future as early as possible [164,165]. They can do this by asking:

Whether the caregiver has thought about what the child or adolescent might do after they finish high school

If the child or adolescent has a special interest or talent that can be a starting place for thinking about future work or career

Families should be encouraged to allow the child to try new things and to include the child in programs and activities with typically developing children. Providers can foster development of independence and self-advocacy by working and talking directly with the child or adolescent to identify goals and to promote as much autonomy as possible in medical care and decision making.

Pediatric health care providers can initiate prevocational counseling during early adolescence and encourage exploration of various careers through part-time jobs, volunteer work, or mentorship during the primary and secondary school years [166]. Adolescents with special needs should be encouraged to take responsibility for self-care, budgeting an allowance, and household chores in addition to learning to manage any medications.

If possible, health care providers should facilitate connection with families of older CYSHCN (eg, through formal support and information organizations or informal connections among patient families). These connections can provide support for both families and allow the family of the younger child to benefit from the other family's positive and negative experiences [164].

Planning for transition should be part of the annual individualized education program (IEP) for all students who receive special education services between 14 years of age and graduation [85]. The plan should include self-determination and leadership skills and consider the student's preferences for employment, community living, recreation, relationships, transportation, and community integration. Involvement of a multispecialty team is associated with a successful transition [167].

RESOURCES AND SUPPORT SERVICES — The following websites provide advocacy and educational resources health care providers and parents/caregivers/families of CYSHCN:

American Academy of Pediatric Dentistry

American Academy of Pediatrics Children with Medical Complexity

American Academy of Pediatrics Clinical Report on prescribing physical, occupational, and speech therapy services for children with disabilities

American Academy of Pediatrics National Resource Center for Patient/Family-Centered Medical Home

American Board of Pediatrics Roadmap Project

Americans with Disabilities Technical Assistance

Pediatric Care Coordination Curriculum

Catalyst Center

Center for Parent Information and Resources

Council for Exceptional Children

Emergency Information Form for Children with Special Health Care Needs

Got Transition

Institute for Patient- and Family-Centered Care

National Resource Center for Patient/Family-Centered Medical Home

The National Respite Locator service

National Standards for Systems of Care for CYSHCN Version 2.0

Parent Advocacy Coalition for Educational Rights

Special Education Resources on the Internet

Think College

SUMMARY

Terminology – Children and youth with special health care needs (CYSHCN) are those who have or are at increased risk of developing a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that usually required by children. Children with medical complexity are a subset of CYSHCN; they have multiple chronic conditions often requiring the care of an array of community- and hospital-based providers. (See 'Terminology' above.)

Types of special needs – Examples of special needs for CYSHCN include prescriptions; rehabilitative therapies; assistive devices; vision, hearing, or dental care; nutrition therapies; referrals for specialty medical services, educational services, or social services; behavioral or mental health care; and respite or hospice care. (See 'Types of special needs' above.)

Having a child or adolescent with chronic illness affects family life, the wellbeing of family members, and family finances. (See 'Psychosocial and economic consequences' above.)

Framework of care

A "medical home" model of care provides benefits for CYSHCN and their providers, including streamlined care, efficient use of resources, decreased out-of-pocket expenditures, expanded expertise and competence for the involved providers, establishment of a forum for problem solving, and improved satisfaction. (See 'Medical home' above.)

Provision of patient- and family-centered care is a core principle of care in the medical home. Patient and family-centered care focuses on the individuality and personality of the child, family needs, and the concerns of health care and service providers with whom the child interacts. The family is a full and equal partner in shared decision making. (See 'Patient- and family-centered care' above.)

Important aspects of primary and preventive care for CYSHCN include routine health care maintenance (immunizations, screening, dental care, anticipatory guidance); assessment and referral as necessary (eg, for early intervention or special education services, rehabilitative services, home nursing/home health aide services, behavior therapy, transportation); and support and advocacy. (See 'Primary and preventive care' above.)

CYSHCN often require the care of multiple health professionals. Care coordination is an essential construct within the medical home model, warranting special attention to care planning, team-based care, and supporting the family's goals. (See 'Care coordination' above.)

Transition planning – The transition to adult care providers, self-sufficiency, and financial independence requires advance planning and preparation. A number of resources are available to help health care providers, patients, and families address the transition to adulthood (table 4). (See 'Transition planning' above.)

ACKNOWLEDGMENT — The UpToDate editorial staff acknowledges Lindsey K Grossman, MD, and Margaret Ugalde, RN, DrPH, who contributed to earlier versions of this topic review.

  1. McPherson M, Arango P, Fox H, et al. A new definition of children with special health care needs. Pediatrics 1998; 102:137.
  2. Kuo DZ, Houtrow AJ, COUNCIL ON CHILDREN WITH DISABILITIES. Recognition and Management of Medical Complexity. Pediatrics 2016; 138.
  3. World Health Organization. Towards a common language for functioning, disability, and health. Geneva 2002. Available at: http://www.who.int/classifications/icf/en/ (Accessed on November 29, 2017).
  4. Cohen E, Kuo DZ, Agrawal R, et al. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics 2011; 127:529.
  5. Centers for Disease Control and Prevention. National Survey of Children with Special Health Care Needs. https://www.cdc.gov/nchs/slaits/cshcn.htm (Accessed on January 04, 2022).
  6. Antonelli RC, Stille CJ, Antonelli DM. Care coordination for children and youth with special health care needs: a descriptive, multisite study of activities, personnel costs, and outcomes. Pediatrics 2008; 122:e209.
  7. Data Resource Center for Child & Adolescent Health. National Survey of Children's Health. 2020-2021 National Survey of Children's Health. Children with special health care needs. Indicator 1.11: Children with special health care needs. https://www.childhealthdata.org/browse/survey/results?q=9314&r=1 (Accessed on January 22, 2023).
  8. Ghandour RM, Hirai AH, Kenney MK. Children and Youth With Special Health Care Needs: A Profile. Pediatrics 2022; 149.
  9. Berry JG. What children with medical complexity, their families, and healthcare providers deserve from an ideal healthcare system. Lucile Packard Foundation for Children's Health 2015. Available at: https://www.lpfch.org/sites/default/files/field/publications/idealhealthcaresystem_0.pdf.
  10. Data Resource Center for Child & Adolescent Health. National Survey of Children's Health. 2020-2021 National Survey of Children's Health. Indicator 4.11 Special services for developmental needs. https://www.childhealthdata.org/browse/survey/results?q=9398&r=1 (Accessed on January 22, 2023).
  11. Boudreau AA, Perrin JM, Goodman E, et al. Care coordination and unmet specialty care among children with special health care needs. Pediatrics 2014; 133:1046.
  12. Sannicandro T, Parish SL, Son E, Powell RM. Health Care Changes for Children with Special Health Care Needs, 2005-2011. Matern Child Health J 2017; 21:524.
  13. Aboneh EA, Chui MA. Care coordination, medical complexity, and unmet need for prescription medications among children with special health care needs. Res Social Adm Pharm 2017; 13:524.
  14. An R. Unmet mental health care needs in U.S. children with medical complexity, 2005-2010. J Psychosom Res 2016; 82:1.
  15. McManus BM, Prosser LA, Gannotti ME. Which Children Are Not Getting Their Needs for Therapy or Mobility Aids Met? Data From the 2009-2010 National Survey of Children With Special Health Care Needs. Phys Ther 2016; 96:222.
  16. McManus BM, Chi D, Carle A. State Medicaid Eligibility Criteria and Unmet Preventive Dental Care Need for CSHCN. Matern Child Health J 2016; 20:456.
  17. Magnusson D, Palta M, McManus B, et al. Capturing Unmet Therapy Need Among Young Children With Developmental Delay Using National Survey Data. Acad Pediatr 2016; 16:145.
  18. Nageswaran S. Respite care for children with special health care needs. Arch Pediatr Adolesc Med 2009; 163:49.
  19. Inkelas M, Raghavan R, Larson K, et al. Unmet mental health need and access to services for children with special health care needs and their families. Ambul Pediatr 2007; 7:431.
  20. Parasuraman SR, Anglin TM, McLellan SE, et al. Health Care Utilization and Unmet Need Among Youth With Special Health Care Needs. J Adolesc Health 2018; 63:435.
  21. Miller JE, Nugent CN, Gaboda D, Russell LB. Reasons for unmet need for child and family health services among children with special health care needs with and without medical homes. PLoS One 2013; 8:e82570.
  22. Kuo DZ, Berry JG, Glader L, et al. Health Services and Health Care Needs Fulfilled by Structured Clinical Programs for Children with Medical Complexity. J Pediatr 2016; 169:291.
  23. Maypole J, Gavin T, de Banate MA, Sadof M. Lessons Learned, Best Practices: Care Coordination for Children with Medical Complexity. Pediatr Ann 2020; 49:e457.
  24. Council on Children with Disabilities and Medical Home Implementation Project Advisory Committee. Patient- and family-centered care coordination: a framework for integrating care for children and youth across multiple systems. Pediatrics 2014; 133:e1451.
  25. Houtrow A, Murphy N, COUNCIL ON CHILDREN WITH DISABILITIES. Prescribing Physical, Occupational, and Speech Therapy Services for Children With Disabilities. Pediatrics 2019; 143.
  26. Salt A, Sargent J. Common visual problems in children with disability. Arch Dis Child 2014; 99:1163.
  27. Adams RC, Elias ER, Council On Children With Disabilities. Nonoral feeding for children and youth with developmental or acquired disabilities. Pediatrics 2014; 134:e1745.
  28. Adams JS, Chien AT, Wisk LE. Mental Illness Among Youth With Chronic Physical Conditions. Pediatrics 2019; 144.
  29. Pilapil M, Coletti DJ, Rabey C, DeLaet D. Caring for the Caregiver: Supporting Families of Youth With Special Health Care Needs. Curr Probl Pediatr Adolesc Health Care 2017; 47:190.
  30. Elias ER, Murphy NA, Council on Children with Disabilities. Home care of children and youth with complex health care needs and technology dependencies. Pediatrics 2012; 129:996.
  31. Mattson G, Kuo DZ, COMMITTEE ON PSYCHOSOCIAL ASPECTS OF CHILD AND FAMILY HEALTH, COUNCIL ON CHILDREN WITH DISABILITIES. Psychosocial Factors in Children and Youth With Special Health Care Needs and Their Families. Pediatrics 2019; 143.
  32. Hendriks AH, De Moor JM, Oud JH, Franken WM. Service needs of parents with motor or multiply disabled children in Dutch therapeutic toddler classes. Clin Rehabil 2000; 14:506.
  33. Thomson J, Shah SS, Simmons JM, et al. Financial and Social Hardships in Families of Children with Medical Complexity. J Pediatr 2016; 172:187.
  34. Namkung EH, Song J, Greenberg JS, et al. The Relative Risk of Divorce in Parents of Children With Developmental Disabilities: Impacts of Lifelong Parenting. Am J Intellect Dev Disabil 2015; 120:514.
  35. Hartley SL, Barker ET, Seltzer MM, et al. The relative risk and timing of divorce in families of children with an autism spectrum disorder. J Fam Psychol 2010; 24:449.
  36. Miodrag N, Hodapp RM. Chronic stress and health among parents of children with intellectual and developmental disabilities. Curr Opin Psychiatry 2010; 23:407.
  37. Liu CL, Zaslavsky AM, Ganz ML, et al. The financial implications of availability and quality of a usual source of care for children with special health care needs. Matern Child Health J 2008; 12:243.
  38. Okumura MJ, Van Cleave J, Gnanasekaran S, Houtrow A. Understanding factors associated with work loss for families caring for CSHCN. Pediatrics 2009; 124 Suppl 4:S392.
  39. Foster CC, Chorniy A, Kwon S, et al. Children With Special Health Care Needs and Forgone Family Employment. Pediatrics 2021; 148.
  40. Kuhlthau K, Hill KS, Yucel R, Perrin JM. Financial burden for families of children with special health care needs. Matern Child Health J 2005; 9:207.
  41. Newacheck PW, Inkelas M, Kim SE. Health services use and health care expenditures for children with disabilities. Pediatrics 2004; 114:79.
  42. Perrin JM, Shane MW, Bloom SR. Home and Community Care for Chronically Ill Children, Oxford University Press, New York 1993. p.89.
  43. Newacheck PW, McManus MA. Financing health care for disabled children. Pediatrics 1988; 81:385.
  44. Boulet SL, Boyle CA, Schieve LA. Health care use and health and functional impact of developmental disabilities among US children, 1997-2005. Arch Pediatr Adolesc Med 2009; 163:19.
  45. Kuo DZ, Melguizo-Castro M, Goudie A, et al. Variation in child health care utilization by medical complexity. Matern Child Health J 2015; 19:40.
  46. Agrawal R, Hall M, Cohen E, et al. Trends in Health Care Spending for Children in Medicaid With High Resource Use. Pediatrics 2016; 138.
  47. Peltz A, Hall M, Rubin DM, et al. Hospital Utilization Among Children With the Highest Annual Inpatient Cost. Pediatrics 2016; 137:e20151829.
  48. COMMITTEE ON CHILD HEALTH FINANCING. Medicaid Policy Statement. Pediatrics 2013; 131:e1697.
  49. Peters CP. Children with special health care needs: Minding the gaps. National Health Policy Forum, Washington DC, 2005. Available at: www.nhpf.org/library/background-papers/BP_CSHCN_06-27-05.pdf.
  50. Newacheck PW, Kim SE. A national profile of health care utilization and expenditures for children with special health care needs. Arch Pediatr Adolesc Med 2005; 159:10.
  51. Davidoff AJ. Insurance for children with special health care needs: patterns of coverage and burden on families to provide adequate insurance. Pediatrics 2004; 114:394.
  52. Kogan MD, Newacheck PW, Honberg L, Strickland B. Association between underinsurance and access to care among children with special health care needs in the United States. Pediatrics 2005; 116:1162.
  53. Warfield ME, Gulley S. Unmet need and problems accessing specialty medical and related services among children with special health care needs. Matern Child Health J 2006; 10:201.
  54. Liu CL, Zaslavsky AM, Ganz ML, et al. Continuity of health insurance coverage for children with special health care needs. Matern Child Health J 2005; 9:363.
  55. Maternal and Child Health Blueprint for change. Available at: https://mchb.hrsa.gov/programs-impact/focus-areas/children-youth-special-health-care-needs-cyshcn/blueprint-change (Accessed on February 22, 2023).
  56. McLellan SE, Mann MY, Scott JA, Brown TW. A Blueprint for Change: Guiding Principles for a System of Services for Children and Youth With Special Health Care Needs and Their Families. Pediatrics 2022; 149.
  57. Care coordination curriculum: Care mapping. Boston Children's Hospital. Available at: www.childrenshospital.org/care-coordination-curriculum/care-mapping.
  58. Medical Home Initiatives for Children With Special Needs Project Advisory Committee. American Academy of Pediatrics. The medical home. Pediatrics 2002; 110:184.
  59. Turchi RM, Gatto M, Antonelli R. Children and youth with special healthcare needs: there is no place like (a medical) home. Curr Opin Pediatr 2007; 19:503.
  60. Kan K, Choi H, Davis M. Immigrant Families, Children With Special Health Care Needs, and the Medical Home. Pediatrics 2016; 137.
  61. Sadof M, Carlin S, Brandt S, Maypole J. A Step-by-Step Guide to Building a Complex Care Coordination Program in a Small Setting. Clin Pediatr (Phila) 2019; 58:897.
  62. Kisker CT, Fethke CC, Tannous R. Shared management of children with cancer. Arch Pediatr Adolesc Med 1997; 151:1008.
  63. Porterfield SL, DeRigne L. Medical home and out-of-pocket medical costs for children with special health care needs. Pediatrics 2011; 128:892.
  64. Mosquera RA, Avritscher EB, Samuels CL, et al. Effect of an enhanced medical home on serious illness and cost of care among high-risk children with chronic illness: a randomized clinical trial. JAMA 2014; 312:2640.
  65. Turchi RM, Berhane Z, Bethell C, et al. Care coordination for CSHCN: associations with family-provider relations and family/child outcomes. Pediatrics 2009; 124 Suppl 4:S428.
  66. Avritscher EBC, Mosquera RA, Tyson JE, et al. Post-Trial Sustainability and Scalability of the Benefits of a Medical Home for High-Risk Children with Medical Complexity. J Pediatr 2019; 206:232.
  67. Kelly AM, Kratz B, Bielski M, Rinehart PM. Implementing transitions for youth with complex chronic conditions using the medical home model. Pediatrics 2002; 110:1322.
  68. www.gottransition.org (Accessed on August 03, 2017).
  69. White PH, Cooley WC, TRANSITIONS CLINICAL REPORT AUTHORING GROUP, et al. Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home. Pediatrics 2018; 142.
  70. McAllister JW, Cooley WC, Van Cleave J, et al. Medical home transformation in pediatric primary care--what drives change? Ann Fam Med 2013; 11 Suppl 1:S90.
  71. Carosella A, Snyder A, Ward E. What Parents of Children With Complex Medical Conditions Want Their Child's Physicians to Understand. JAMA Pediatr 2018; 172:315.
  72. Kuo DZ, Houtrow AJ, Arango P, et al. Family-centered care: current applications and future directions in pediatric health care. Matern Child Health J 2012; 16:297.
  73. COMMITTEE ON HOSPITAL CARE and INSTITUTE FOR PATIENT- AND FAMILY-CENTERED CARE. Patient- and family-centered care and the pediatrician's role. Pediatrics 2012; 129:394.
  74. Adams RC, Levy SE, COUNCIL ON CHILDREN WITH DISABILITIES. Shared Decision-Making and Children With Disabilities: Pathways to Consensus. Pediatrics 2017; 139.
  75. Hoover CG, Coller RJ, Houtrow A, et al. Understanding Caregiving and Caregivers: Supporting Children and Youth With Special Health Care Needs at Home. Acad Pediatr 2022; 22:S14.
  76. Family engagement guide: The role of family health partners in quality improvement within a pediatric medical home. National Institute for Children's Health Quality, Boston, MA. Available at: https://www.nichq.org/sites/default/files/resource-file/Family_Engagement_Guide_FINAL.pdf.
  77. Advancing the practice of patient- and family-centered care in primary care and other ambulatory settings: How to get started.... Institute for Patient- and Family-Centered Care, Bethesda, MD, 2016. Available at: www.ipfcc.org/resources/GettingStarted-AmbulatoryCare.pdf.
  78. Liddle M, Birkett K, Bonjour A, Risma K. A Collaborative Approach to Improving Health Care for Children With Developmental Disabilities. Pediatrics 2018; 142.
  79. Nathawad R, Hanks C. Optimizing the Office Visit for Adolescents with Special Health Care Needs. Curr Probl Pediatr Adolesc Health Care 2017; 47:182.
  80. Katkin JP, Kressly SJ, Edwards AR, et al. Guiding Principles for Team-Based Pediatric Care. Pediatrics 2017; 140.
  81. Pless IB, Satterwhite B, Van Vechten D. Division, duplication and neglect: patterns of care for children with chronic disorders. Child Care Health Dev 1978; 4:9.
  82. Palfrey JS, Levy JC, Gilbert KL. Use of primary care facilities by patients attending specialty clinics. Pediatrics 1980; 65:567.
  83. Das M, Spowart K, Crossley S, Dutton GN. Evidence that children with special needs all require visual assessment. Arch Dis Child 2010; 95:888.
  84. Neter JE, Schokker DF, de Jong E, et al. The prevalence of overweight and obesity and its determinants in children with and without disabilities. J Pediatr 2011; 158:735.
  85. American Academy of Pediatrics Council on Children with Disabilities. Care coordination in the medical home: integrating health and related systems of care for children with special health care needs. Pediatrics 2005; 116:1238.
  86. Canty-Mitchell J, Austin JK, Jaffee K, et al. Behavioral and mental health problems in low-income children with special health care needs. Arch Psychiatr Nurs 2004; 18:79.
  87. Weiland SK, Pless IB, Roghmann KJ. Chronic illness and mental health problems in pediatric practice: results from a survey of primary care providers. Pediatrics 1992; 89:445.
  88. American Academy of Pediatrics Committee on Children With Disabilities and Committee on Psychosocial Aspects of Child and Family Health: Psychosocial risks of chronic health conditions in childhood and adolescence. Pediatrics 1993; 92:876.
  89. Curtis CE, Luby JL. Depression and social functioning in preschool children with chronic medical conditions. J Pediatr 2008; 153:408.
  90. Foy JM. The medical home and integrated behavioral health. Pediatrics 2015; 135:930.
  91. Kistin CJ, Tompson MC, Cabral HJ, et al. Subsequent Maltreatment in Children With Disabilities After an Unsubstantiated Report for Neglect. JAMA 2016; 315:85.
  92. Legano LA, Desch LW, Messner SA, et al. Maltreatment of Children With Disabilities. Pediatrics 2021; 147.
  93. Fang Z, Cerna-Turoff I, Zhang C, et al. Global estimates of violence against children with disabilities: an updated systematic review and meta-analysis. Lancet Child Adolesc Health 2022; 6:313.
  94. Garg A, Jack B, Zuckerman B. Addressing the social determinants of health within the patient-centered medical home: lessons from pediatrics. JAMA 2013; 309:2001.
  95. Garg A, Toy S, Tripodis Y, et al. Addressing social determinants of health at well child care visits: a cluster RCT. Pediatrics 2015; 135:e296.
  96. Pankewicz A, Davis RK, Kim J, et al. Children With Special Needs: Social Determinants of Health and Care Coordination. Clin Pediatr (Phila) 2020; 59:1161.
  97. Sokol R, Austin A, Chandler C, et al. Screening Children for Social Determinants of Health: A Systematic Review. Pediatrics 2019; 144.
  98. Chi DL. Oral Health for US Children with Special Health Care Needs. Pediatr Clin North Am 2018; 65:981.
  99. Kane D, Mosca N, Zotti M, Schwalberg R. Factors associated with access to dental care for children with special health care needs. J Am Dent Assoc 2008; 139:326.
  100. American Academy of Pediatric Dentistry. Council on Clinical Affairs. Guideline on management of dental patients with special health care needs. Pediatr Dent 2012; 34:160.
  101. Bastani P, Mohammadpour M, Ghanbarzadegan A, et al. Provision of dental services for vulnerable groups: a scoping review on children with special health care needs. BMC Health Serv Res 2021; 21:1302.
  102. Van Cleave J, Heisler M, Devries JM, et al. Discussion of illness during well-child care visits with parents of children with and without special health care needs. Arch Pediatr Adolesc Med 2007; 161:1170.
  103. Zaslow T, Dorey F, Limbos MA. Literacy-related activities among children with special healthcare needs. Infants Young Child 2008; 21:221.
  104. Houtrow AJ, Kim SE, Chen AY, Newacheck PW. Preventive health care for children with and without special health care needs. Pediatrics 2007; 119:e821.
  105. Edwards JD. Anticipatory Guidance on the Risks for Unfavorable Outcomes among Children with Medical Complexity. J Pediatr 2017; 180:247.
  106. Huth K, Vandecruys P, Orkin J, Patel H. Medication safety for children with medical complexity. Paediatr Child Health 2020; 25:473.
  107. Carbone PS, Smith PJ, Lewis C, LeBlanc C. Promoting the Participation of Children and Adolescents With Disabilities in Sports, Recreation, and Physical Activity. Pediatrics 2021; 148.
  108. Callahan JM, Baldwin S, Bodnar C, et al. Access to Critical Health Information for Children During Emergencies: Emergency Information Forms and Beyond. Pediatrics 2023; 151.
  109. Bagwell HB, Liggin R, Thompson T, et al. Disaster Preparedness in Families With Children With Special Health Care Needs. Clin Pediatr (Phila) 2016; 55:1036.
  110. The Center for Children with Special needs. Seattle Children's. Available at: https://cshcn.org/resources-contacts/emergency-preparedness-for-children-with-special-needs/ (Accessed on December 13, 2017).
  111. Giallo R, Roberts R, Emerson E, et al. The emotional and behavioural functioning of siblings of children with special health care needs across childhood. Res Dev Disabil 2014; 35:814.
  112. Deavin A, Greasley P, Dixon C. Children's Perspectives on Living With a Sibling With a Chronic Illness. Pediatrics 2018; 142.
  113. Martinez B, Pechlivanoglou P, Meng D, et al. Clinical Health Outcomes of Siblings of Children with Chronic Conditions: A Systematic Review and Meta-Analysis. J Pediatr 2022; 250:83.
  114. Roberts RM, Ejova A, Giallo R, et al. A controlled trial of the SibworkS group program for siblings of children with special needs. Res Dev Disabil 2015; 43-44:21.
  115. The Sibling Support Project. 2018. Available at: https://siblingsupport.org/sibshops.
  116. Maart S, Jelsma J. The sexual behaviour of physically disabled adolescents. Disabil Rehabil 2010; 32:438.
  117. Quint EH. Adolescents with Special Needs: Clinical Challenges in Reproductive Health Care. J Pediatr Adolesc Gynecol 2016; 29:2.
  118. Houtrow A, Elias ER, Davis BE, COUNCIL ON CHILDREN WITH DISABILITIES. Promoting Healthy Sexuality for Children and Adolescents With Disabilities. Pediatrics 2021; 148.
  119. Breuner CC, Mattson G, COMMITTEE ON ADOLESCENCE, COMMITTEE ON PSYCHOSOCIAL ASPECTS OF CHILD AND FAMILY HEALTH. Sexuality Education for Children and Adolescents. Pediatrics 2016; 138.
  120. American Association on Intellectual and Developmental Disabilities. Sexuality. Joint Position Statement of AAIDD and The Arc, adopted 2008. Available at: https://aaidd.org/news-policy/policy/position-statements/sexuality (Accessed on August 21, 2019).
  121. Macon T, Miller JE, Gaboda D, et al. Is there differential retention of children with special health care needs in the State Children's Health Insurance Program? Pediatrics 2007; 120:e1217.
  122. Samuels RC, Liu J, Sofis LA, Palfrey JS. Immunizations in children with special health care needs in a medical home model of care. Matern Child Health J 2008; 12:357.
  123. The pediatrician's role in development and implementation of an Individual Education Plan (IEP) and/or an Individual Family Service Plan (IFSP). American Academy of Pediatrics. Committee on Children with Disabilities. Pediatrics 1999; 104:124.
  124. Gay JC, Thurm CW, Hall M, et al. Home Health Nursing Care and Hospital Use for Medically Complex Children. Pediatrics 2016; 138.
  125. Lipkin PH, Okamoto J, Council on Children with Disabilities, Council on School Health. The Individuals With Disabilities Education Act (IDEA) for Children With Special Educational Needs. Pediatrics 2015; 136:e1650.
  126. Werner S, Chabany R. Guardianship law versus supported decision-making policies: Perceptions of persons with intellectual or psychiatric disabilities and parents. Am J Orthopsychiatry 2016; 86:486.
  127. Konrad SC. What parents of seriously ill children value: parent-to-parent connection and mentorship. Omega (Westport) 2007; 55:117.
  128. Schmidt S, Thyen U, Chaplin J, et al. Cross-cultural development of a child health care questionnaire on satisfaction, utilization, and needs. Ambul Pediatr 2007; 7:374.
  129. American Academy of Pediatrics Council on Children With Disabilities, Cartwright JD. Provision of educationally related services for children and adolescents with chronic diseases and disabling conditions. Pediatrics 2007; 119:1218.
  130. Kuo DZ, McAllister JW, Rossignol L, et al. Care Coordination for Children With Medical Complexity: Whose Care Is It, Anyway? Pediatrics 2018; 141:S224.
  131. McAllister JW, McNally Keehn R, Rodgers R, et al. Effects of a Care Coordination Intervention with Children with Neurodevelopmental Disabilities and Their Families. J Dev Behav Pediatr 2018; 39:471.
  132. Wolfe I, Satherley RM, Scotney E, et al. Integrated Care Models and Child Health: A Meta-analysis. Pediatrics 2020; 145.
  133. Norlin C, Romeo A, Rocha R. Developing a web site to support the implementation of medical home. AMIA Annu Symp Proc 2007; :563.
  134. Antonelli RC, Antonelli DM. Providing a medical home: the cost of care coordination services in a community-based, general pediatric practice. Pediatrics 2004; 113:1522.
  135. Association of Maternal and Child Health Programs, National Academy of Health Policy, and Lucile Packard Foundation for Children's Health. Standards for Systems of Care for Children and Youth with Special Health Care Needs Version 2.0. June 2017 https://www.lpfch.org/publication/standards-systems-care-children-and-youth-special-health-care-needs-version-20 (Accessed on December 12, 2017).
  136. Stille CJ, Honigfeld L, Heitlinger LA, et al. The Pediatric Primary Care-Specialist Interface: A Call For Action. J Pediatr 2017; 187:303.
  137. Schor EL. Ten Essential Characteristics of Care Coordination. JAMA Pediatr 2019; 173:5.
  138. McAllister JW. Achieving a shared plan of care with children and youth with special health care needs. Lucile Packard Foundation for Children's Health, 2014. Available at: https://www.lpfch.org/publication/achieving-shared-plan-care-children-and-youth-special-health-care-needs.
  139. Mallory LA, Osorio SN, Prato BS, et al; IMPACT Pilot Study Group. Project IMPACT Pilot Report: Feasibility of Implementing a Hospital-to-Home Transition Bundle. Pediatrics. 2017;139(3):e20154626. Pediatrics 2017; 139.
  140. Rauch DA, COMMITTEE ON HOSPITAL CARE, SECTION ON HOSPITAL MEDICINE. Physician's Role in Coordinating Care of Hospitalized Children. Pediatrics 2018; 142.
  141. Mosquera RA, Avritscher EBC, Pedroza C, et al. Telemedicine for Children With Medical Complexity: A Randomized Clinical Trial. Pediatrics 2021; 148.
  142. Pediatric Care Coordination Curriculum. Boston Children's Hospital, 2013. Available at: http://www.childrenshospital.org/~/media/Care%20Coordination/Pediatric%20Care%20Coordination%20Curriculum.ashx%20WNaY0IxcHhTeWFITUFmTjBoM054OFkyN0VydGVaejNuVjFDeHFYbkpiUDZvQmVsRUsxZE0rVFNPZVkyZ1lMWENMTTlcL3JiYjdwRnM9In0%3D.
  143. Lantin-Hermoso MR, Berger S, Bhatt AB, et al. The Care of Children With Congenital Heart Disease in Their Primary Medical Home. Pediatrics 2017; 140.
  144. Burke R, Liptak GS, Council on Children with Disabilities. Providing a primary care medical home for children and youth with spina bifida. Pediatrics 2011; 128:e1645.
  145. Guidelines for the care of people with spina bifida. https://www.spinabifidaassociation.org/resource/guidelinespdfull/ (Accessed on February 22, 2023).
  146. Liptak GS, Murphy NA, Council on Children With Disabilities. Providing a primary care medical home for children and youth with cerebral palsy. Pediatrics 2011; 128:e1321.
  147. Bull MJ, Committee on Genetics. Health supervision for children with Down syndrome. Pediatrics 2011; 128:393.
  148. American Academy of Pediatrics. Epilepsy: National Coordinating Center for Epilepsy https://www.aap.org/en/patient-care/epilepsy/ (Accessed on January 31, 2022).
  149. Hampl SE, Hassink SG, Skinner AC, et al. Clinical Practice Guideline for the Evaluation and Treatment of Children and Adolescents With Obesity. Pediatrics 2023; 151.
  150. Sterni LM, Collaco JM, Baker CD, et al. An Official American Thoracic Society Clinical Practice Guideline: Pediatric Chronic Home Invasive Ventilation. Am J Respir Crit Care Med 2016; 193:e16.
  151. Hersh JH, Saul RA, Committee on Genetics. Health supervision for children with fragile X syndrome. Pediatrics 2011; 127:994.
  152. McCandless SE, Committee on Genetics. Clinical report—health supervision for children with Prader-Willi syndrome. Pediatrics 2011; 127:195.
  153. Tinkle BT, Saal HM, Committee on genetics. Health supervision for children with Marfan syndrome. Pediatrics 2013; 132:e1059.
  154. Trotter TL, Hall JG, American Academy of Pediatrics Committee on Genetics. Health supervision for children with achondroplasia. Pediatrics 2005; 116:771.
  155. Council on Children With Disabilities. From the American Academy of Pediatrics: Policy statements--Supplemental Security Income (SSI) for children and youth with disabilities. Pediatrics 2009; 124:1702.
  156. Romley JA, Shah AK, Chung PJ, et al. Family-Provided Health Care for Children With Special Health Care Needs. Pediatrics 2017; 139.
  157. Simpser E, Hudak ML, SECTION ON HOME CARE, COMMITTEE ON CHILD HEALTH FINANCING. Financing of Pediatric Home Health Care. Pediatrics 2017; 139.
  158. AAP Publications Reaffirmed. Pediatrics 2023; 151.
  159. Foster CC, Agrawal RK, Davis MM. Home Health Care For Children With Medical Complexity: Workforce Gaps, Policy, And Future Directions. Health Aff (Millwood) 2019; 38:987.
  160. Rossfeld ZM. Many families shouldering responsibilities for home health care. AAP News 2017; 38:15.
  161. Blum RW. Transition to adult health care: setting the stage. J Adolesc Health 1995; 17:3.
  162. Scal P. Transition for youth with chronic conditions: primary care physicians' approaches. Pediatrics 2002; 110:1315.
  163. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 2002; 110:1304.
  164. Olsen DG, Swigonski NL. Transition to adulthood: the important role of the pediatrician. Pediatrics 2004; 113:e159.
  165. Hergenroeder AC, Wiemann CM, Cohen MB. Current Issues in Transitioning from Pediatric to Adult-Based Care for Youth with Chronic Health Care Needs. J Pediatr 2015; 167:1196.
  166. Johnson CP. Transition into adulthood. Pediatr Ann 1995; 24:268.
  167. Bent N, Tennant A, Swift T, et al. Team approach versus ad hoc health services for young people with physical disabilities: a retrospective cohort study. Lancet 2002; 360:1280.
Topic 2840 Version 72.0

References

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