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Children with Special Healthcare Needs (CSHCN) are defined by the Maternal and Child Health Bureau as:
There are a wide variety of physical, mental, and psychological health conditions considered to be special healthcare needs in the United States. They range from relatively mild to chronic and severe. The functional impairments of CSHCN include problems with one or more of the following criteria: breathing, swallowing/digestion/metabolism, blood circulation, chronic pain, hearing even with corrective devices, seeing even with corrective devices, taking care of self, coordination/moving around, learning/understanding/paying attention, speaking/communicating, making/keeping friends, and behavior. [2] The list below states health conditions considered to be special healthcare needs.
As of 2009, 15.1% of all children in the US are considered to have special healthcare needs, [2] [3]
The prevalence of children with special healthcare needs in the population depends on several factors, including gender, age, socioeconomic level and family household education. [4] In the National Survey of Children's Health Data in 2007, gender is the strongest predictor of special health care needs—about 60% of children with special health care needs are boys and 30% are girls. [2] A study by Newacheck et al. found that age is also a strong predictor, as school-age children are found to be twice as likely as toddlers to require special needs care, and this prevalence continues to increase as children grow older. [4] Families with income below the federal poverty level are 1/3 more likely to have children with special health care needs, and families with 12 or fewer years of education have increased prevalence of a child with SHCN as well. [4] Family structure also correlates with this prevalence—for single-mother families are 40% more likely to have a CSHCN than two-parent households. [4]
In a comprehensive study by the U.S. Health Resources and Services Administration (HRSA), using the 2007 National Survey of Children's Health data, it was found that children with SHCN when compared to those children without SHCN, face more inadequacies in healthcare, education, health of family, and maintaining a healthy lifestyle. [3] CSHCN face more difficulties with accessing mental health care [3] as well as having a medical home. A medical home is one of the standards of administering healthcare recommended by the Maternal and Child Health Bureau. [5] In school, these children have an increased risk of missing class, being disengaged in the classroom, and repeating a grade. [3] They also have more cases of inadequate sleep every night in comparison to their peers. [3] CSHCN are more likely to not exercise the recommended four times a week, and they have higher chance of being overweight/obese. [3] They also face increased challenges in making friends. [3] The parents of CSHCN have challenges as well. The study by HRSA, found that the parents of special needs children experience more stress, decreased health, and more questioning of their parenting skills. [3] They also experience challenges with health information management and communication among their child's caregivers, where research on the design of digital health tools in this context recommends developing tools that reduce physical documentation needs, support timely access to information, can be customized for specific communication needs, and have shallow learning curves. [6]
Despite these challenges, children with SHCN fare better than non-affected children in preventative health care and preventative dental care. [3] They have a higher rate of having health insurance than normal children. [2] They more frequently complete the recommended annual primary care visit, and bi-annual dentist visit. [2] They also have a tendency to use more Developmental Screening, especially those with public healthcare. [3] Developmental screening is used by doctors to check and evaluate for proper child development over time on a physical and cognitive level. The American Academy of Pediatrics recommends visits for developmental screening at ages 9,18 and at 24–30 months. [7]
Emotional and behavioral disorders (EBD) are disorders that include ADD/ADHD, anxiety, ASD, depression, OCD/conduct disorder, developmental delay and Tourette's Syndrome, and they increase the challenges CSHCN face. [3] 40% of CSHCN have an EBD and 80% of these children also experience another health problem along with their EBD, according to the 2007 National Survey of Children's Health. [2] The Health Resources and Services Administration found that these disorders are associated with an even greater decrease in quality of family-life, education and healthcare. [3] Parent's health worsens and stress increases when they have children with an EBD. [3] These EBD children miss more classes and are more disengaged in class than non-EBD CSHCN. [3] EBD-CSHCN experience reduced family center-care and effective care-coordination. [3] They also face greater difficulty in their ability to make friends than non-EBD CSHCN. [3]
A systematic review of randomized controlled trials found evidence that
The United States governments employs several different programs in order to provide insurance and care for CSHCN. These include Title V grants, Medicaid and Children's Health Insurance Program (CHIP). These three programs vary in their definition and eligibility of care for CSHCN. [1]
Medicaid is the program implemented under Title XIX of the Social Security Act. [9] It is a public insurance program that provides mandatory services for patients such as:
Medicaid requires no co-payment or deductibles. To be eligible for the program one must be in one of four categories. The first is income level, the second is disability criteria, the third is eligibility for institutional level of care, and the fourth is out of home placement. Many CSHCN qualify for Medicaid based on low income level, but some children qualify independently of income level due to their disabilities. Medicaid has a more restrictive definition of disabilities and special healthcare needs than the Maternal and Children's Health Bureau (MCHB), and defines special needs as needs that must impede daily functioning. Medicaid accepts children who need to receive Supplemental Security Income program money, and children who are defined as medically needy. [9] [10] Medically needy children are those whose families have above the maximum income to receive Medicaid, but due to health expenditures their income is lowered to the level required. 40 states currently offer this program. [11] Medicaid programs in each state are administered differently, and federal dollars go to each state based on per capita income levels. As of 2010, the Medicaid program had 405 billion dollars for the entire program. With the new Patient Protection and Affordable Care Act, by 2014 state Medicaid levels will rise to 138% of the Federal Poverty Line, increasing the number of CSHCN receiving Medicaid. [9] [10]
This program, the Children's Health Insurance Program (CHIP), was created with Title XXI of the Social Security Act, [12] and is meant to cover the gap between children who qualify for Medicaid and those who can afford private insurance. [10] It covers children up to nineteen years of age and many states also choose to help insure pregnant women. 46 of the states and the District of Columbia insure up to 200% of the Federal Poverty Line. CHIP receives its funding from the federal government but it is capped, unlike Medicaid. CSHCN who use CHIP receive all of the same federally mandated programs that Medicaid must offer. The program also requires that mental health services be offered as equally as physical health services. [10] [12]
This Social Security Act, Title V, states that $850,000,000 in grant money is to be allotted starting in 2001 and every year after to the states in order to accomplish health goals of the Public Health Service Act as well as the goals of Title V. The Title V grant money is set out to specifically affect CSHCN in several ways. First, it requires states to provide rehabilitation services for blind or disabled individuals under the age of 16. It also allocates money to projects of both national and state importance that help maternal and child health as well as children with special healthcare needs. The act requires that there are community-based programs such as daycare that help provide for CSHCN. Another requirement is the creation of family-to-family health information centers that assist families with CSHCN to make informed decisions regarding healthcare and resources. [13]
This program works with the Maternal and Child Health Bureau, and employs their definition of CSHCN as stated earlier. Title V does not provide as much money as CHIP or Medicaid, but is used to fill the gaps where these programs do not cover. The Title V money is used to help with the Early Periodic Screening Diagnosis and Treatment Program (EPSDT) that is employed by Medicaid to test children. Title V shares the data collection responsibility of these three programs as well as develops educational materials. The Title V programs also have the goal to promote community-based services for all children as well as to promote coordinated care for families. [10] [13]
Children with special healthcare needs require more healthcare for their various health conditions as well as more types of therapies and treatments. [2] Therapies include occupational therapy, physical therapy, and speech-language pathology among others.
The American Academy of Pediatrics (AAP) medical home model is the suggested form of healthcare administration for children with special health care needs due to their increased healthcare needs. [5] In a study by Judith Palfrey et al. it was found to indicate improved health and increase patient satisfaction. [14] This model as defined by the AAP is a total coordination of care for infants, children and adolescents. It consists of a primary physician, preferably a pediatrician, that a child and their family know well and who is a medical advocate for the care of the child. All medical care in the medical home is accessible, continuous, comprehensive, family-centered, compassionate and coordinated. [5] This model requires several elements:
The pediatrician assumes the ultimate responsibility for all care that is provided for the child even though other medical professionals are involved. [5] Currently, 48.9% of CSHCN have access to a medical home while 59.6% of non-affected children have access to a medical home. [2]
Therapies for children with special healthcare needs can be accessed via public schools or private therapists. The Individuals with Disabilities Education Act (IDEA) includes occupational and physical therapy as well as other therapies, as part of the special education that should be offered in all public schools to CSHCN. This act states that all children with disabilities should have access to education that suits their SHCN, including needed therapies. [15] [16] Out of school therapies can also be used be employed by children with SHCN but only 3.2% of CSHCN qualify for uses of special therapy under their insurance programs. [2]
One type of therapy for children with SHCN is occupational therapy. Occupational therapists work with CSHCN by supporting them and their families to learn how to participate in everyday routines and daily activities. They encourage children with physical, cognitive, communication and behavior challenges to develop ways to live, play, learn and make friends despite their special needs. [17] Occupational therapists can work with these children and their schools to create more accommodating learning environments. Another skill these professionals teach to children with SHCN is how to use adaptive equipment such as wheelchairs, eating aids and braces in daily life. Some occupational therapists try to work with very young children at risk for SHCN in order to try and prevent future disability through occupational therapy. [18]
The types of insurance vary for children with special healthcare needs, 9.3% of CSHCN have no insurance at all, 52.4% have private insurance, 35.9% have public insurance and 8.2% have some combination of both public and private. [2] Insurance gaps and other health costs affect 21.6% of families with CSHCN, who state that they face financial problems due to their CSHCN. In total, 34.3% of these families believe that their current insurance is not adequate in providing for all of their additional healthcare costs. [2]
The Maternal and Child Health Bureau requires services to be available that are necessary for CSHCN to transition to all aspects of adult life. [19] 90% of Adolescents with SHCN (ASHCN) are expected to live into adulthood, and access to healthcare decreases as ASHCN grow older according to the Maternal and Child Health Bureau. [20] Youth lose health coverage they received in the past from programs like CHIP as well as Supplemental Security Income once they reach the ages of 18–21. Adult healthcare providers are not as familiar with childhood onset conditions as pediatricians. [20] A study by Jane Park et al. found that mental health conditions increase in prevalence as children get older and age into adulthood, and ASHCN who have mental health conditions (with or without physical conditions) fare worse on their transition to adult healthcare. [21] [22] The MCHB recommends that children should have their transition to adult healthcare be mediated and provided for by their doctors. The Bureau requires that doctors need to have discussed with the adolescents with SHCN and their families three points: how to transition to adult primary care doctors as opposed to pediatricians, how health needs will change as the youth become adults, and how to maintain health insurance as an adult. The doctor is also supposed to encourage youth to take responsibility for their own health needs. [20] Currently 60% of doctors of adolescents with SHCN do not meet these criteria. [2]
Another recommendation for healthcare providers by the Maternal and Child Health Bureau is the creation of a written Healthcare Transition (HCT) plan. [20] According to a study by Peter Scal and Marjorie Ireland, 30.08% of ASHCN had discussed such a plan. It was also found that adolescents who were older and who had more complicated needs were more likely to have an HCT. [23]
The Patient Protection and Affordable Care Act passed by the Obama administration in 2010 sets forth new requirements for ability of adolescents with SHCN to transition healthcare services from pediatric services. The Act also expands their ability to pay for and access these services. [24] It states three criteria that must be met for adolescents. First, adolescents need to have access to a comprehensive healthcare system that they can find a way to pay for, as well as be able to navigate the system. Second, preventable health problems need to be successfully prevented. Third, chronic conditions need to be managed and the transition to adult healthcare needs to be assured. Skills that ASHCN are recommended to possess to accomplish these goals include the ability to describe their own illness, know their own medication and dosages, know how to contact a clinician, and the ability to schedule appointments and call in for refills. [21] [22] [24]
Occupational therapists (OTs) are health care professionals specializing in occupational therapy and occupational science. OTs and occupational therapy assistants (OTAs) use scientific bases and a holistic perspective to promote a person's ability to fulfill their daily routines and roles. OTs have training in the physical, psychological, and social aspects of human functioning deriving from an education grounded in anatomical and physiological concepts, and psychological perspectives. They enable individuals across the lifespan by optimizing their abilities to perform activities that are meaningful to them ("occupations"). Human occupations include activities of daily living, work/vocation, play, education, leisure, rest and sleep, and social participation.
In the United States, Medicaid is a government program that provides health insurance for adults and children with limited income and resources. The program is partially funded and primarily managed by state governments, which also have wide latitude in determining eligibility and benefits, but the federal government sets baseline standards for state Medicaid programs and provides a significant portion of their funding.
A nursing home is a facility for the residential care of older people, senior citizens, or disabled people. Nursing homes may also be referred to as care homes, skilled nursing facilities (SNF) or long-term care facilities. Often, these terms have slightly different meanings to indicate whether the institutions are public or private, and whether they provide mostly assisted living, or nursing care and emergency medical care. Nursing homes are used by people who do not need to be in a hospital, but require care that is hard to provide in a home setting. The nursing home staff attends to the patients' medical and other needs. Most nursing homes have nursing aides and skilled nurses on hand 24 hours a day.
Child life specialists are pediatric health care professionals who work with children and families in hospitals and other settings to help them cope with the challenges of hospitalization, illness, and disability. They provide children with age-appropriate preparation for medical procedures, pain management and coping strategies, and play and self-expression activities. They also provide information, support, and guidance to parents, siblings, and other family members.
Long-term care (LTC) is a variety of services which help meet both the medical and non-medical needs of people with a chronic illness or disability who cannot care for themselves for long periods. Long-term care is focused on individualized and coordinated services that promote independence, maximize patients' quality of life, and meet patients' needs over a period of time.
Early childhood intervention (ECI) is a support and educational system for very young children who have been victims of, or who are at high risk for child abuse and/or neglect as well as children who have developmental delays or disabilities. Some states and regions have chosen to focus these services on children with developmental disabilities or delays, but Early Childhood Intervention is not limited to children with these disabilities.
In clinical diagnostic and functional development, special needs refers to individuals who require assistance for disabilities that may be medical, mental, or psychological. Guidelines for clinical diagnosis are given in both the Diagnostic and Statistical Manual of Mental Disorders and the International Classification of Diseases 9th edition. Special needs can range from people with autism, cerebral palsy, Down syndrome, dyslexia, dyscalculia, dyspraxia, dysgraphia, blindness, deafness, ADHD, and cystic fibrosis. They can also include cleft lips and missing limbs. The types of special needs vary in severity, and a student with a special need is classified as being a severe case when the student's IQ is between 20 and 35. These students typically need assistance in school, and have different services provided for them to succeed in a different setting.
Adolescent medicine, also known as adolescent and young adult medicine, is a medical subspecialty that focuses on care of patients who are in the adolescent period of development. This period begins at puberty and lasts until growth has stopped, at which time adulthood begins. Typically, patients in this age range will be in the last years of middle school up until college graduation. In developed nations, the psychosocial period of adolescence is extended both by an earlier start, as the onset of puberty begins earlier, and a later end, as patients require more years of education or training before they reach economic independence from their parents.
A group home, congregate living facility, care home, adult family home, etc., is a structured and supervised residence model that provides assisted living and medical care for those with complex health needs. Traditionally, the model has been used for children or young people who cannot live with their families or afford their own homes, people with chronic disabilities who may be adults or seniors, or people with dementia and related aged illnesses. Typically, there are no more than six residents, and there is at least one trained caregiver there 24 hours a day. In some early "model programs", a house manager, night manager, weekend activity coordinator, and four part-time skill teachers were reported. Originally, the term group home referred to homes of 8 to 16 individuals, which was a state-mandated size during deinstitutionalization. Residential nursing facilities, also included in this article, may be as large as 100 individuals in 2015, which is no longer the case in fields such as intellectual and developmental disabilities. Depending on the severity of the condition requiring one to need to live in a group home, some clients are able to attend day programs and most clients are able to live normal lifestyles.
Health is the state of complete physical, mental, and social well-being and a positive concept emphasizing social and personal resources, as well as physical capacities. This article lists major topics related to personal health.
Early and Periodic Screening, Diagnostic and Treatment (EPSDT) is the child health component of Medicaid. Federal statutes and regulations state that children under age 21 who are enrolled in Medicaid are entitled to EPSDT benefits and that States must cover a broad array of preventive and treatment services. Unlike private insurance, EPSDT is designed to address problems early, ameliorate conditions, and intervene as early as possible. For the 25 million children enrolled in Medicaid and entitled to EPSDT in 2012, the program is a vital source of coverage and a means to improve the health and well-being of beneficiaries.
The Maternal and Child Health Bureau (MCHB), is one of six Bureaus within the Health Resources and Services Administration, an agency of the U.S. Department of Health and Human Services located in Rockville, Maryland.
The Illinois Department of Healthcare and Family Services (HFS), formerly the Department of Public Aid, is the code department of the Illinois state government that is responsible for providing healthcare coverage for adults and children who qualify for Medicaid, and for providing child support services to help ensure that Illinois children receive financial support from both parents.
Pediatric psychology is a multidisciplinary field of both scientific research and clinical practice which attempts to address the psychological aspects of illness, injury, and the promotion of health behaviors in children, adolescents, and families in a pediatric health setting. Psychological issues are addressed in a developmental framework and emphasize the dynamic relationships which exist between children, their families, and the health delivery system as a whole.
The California Children's Services (CCS) Program, established in 1927, is a partnership between state and counties that provides medical case management for children in California diagnosed with serious chronic diseases. It provides services to more than 165,000 children in California.
Family support is the support of families with a member with a disability, which may include a child, an adult, or even the parent in the family. In the United States, family support includes "unpaid" or "informal" support by neighbors, families, and friends, "paid services" through specialist agencies providing an array of services termed "family support services", school or parent services for special needs such as respite care, specialized child care or peer companions, or cash subsidies, tax deductions or other financial subsidies. Family support has been extended to different population groups in the US and worldwide. Family support services are currently a "community services and funding" stream in New York and the US which has had variable "application" based on disability groups, administrating agencies, and even, regulatory and legislative intent.
Childhood chronic illness refers to conditions in pediatric patients that are usually prolonged in duration, do not resolve on their own, and are associated with impairment or disability. The duration required for an illness to be defined as chronic is generally greater than 12 months, but this can vary, and some organizations define it by limitation of function rather than a length of time. Regardless of the exact length of duration, these types of conditions are different than acute, or short-lived, illnesses which resolve or can be cured. There are many definitions for what counts as a chronic condition. However, children with chronic illnesses will typically experience at least one of the following: limitation of functions relative to their age, disfigurement, dependency on medical technologies or medications, increased medical attention, and a need for modified educational arrangements.
Underinsurance is the state of an individual having some form of health insurance that does not offer complete financial protection. This results in the underinsured individual to therefore lack the ability to cover out-of-pocket healthcare expenses. There is not yet one clear definition that has been established to include all of the domains that must be addressed. There are three domains that are included when considering underinsurance in healthcare. They include; (1) the economic characteristics of health insurance, (2) the benefits that are or are not covered, and (3) actual access to health services and resources. All of these aspects must be considered when defining, measuring, and identifying instances of underinsurance.
As of 2017, approximately 1.4 million Americans live in a nursing home, two-thirds of whom rely on Medicaid to pay for their care. Residential nursing facilities receive Medicaid federal funding and approvals through a state health department. These facilities may be overseen by various types of state agency.
Approximately 180-220 million young people live with disabilities globally, with 80% living in the developing world, therefore lacking access to education, healthcare and employment [1]. Disability includes physical, mental or mental illness. Many young people live a healthy and stable life, although people with disabilities may have more obstacles than those without because of their possible limitations, created by physical weakness and social incapacity..
The NSCH provides a unique view of CSHCN in the context of where they live, play and go to school. It also allows comparisons to children without special health care needs.