All children need access to high-quality health care and other services that meet their unique needs and help them achieve optimal outcomes across the domains discussed in the preceding chapter. This chapter focuses on health care services and programs; the two chapters that follow focus on other services directed at ensuring optimal outcomes in the domain of social and human capital development. It is important to note that children with disabilities require assistance from many domains to meet their unique needs, and that some types of health services are offered through schools, job centers, or other community organizations outside of the traditional health care sector. Positive social and human capital outcomes over the life span, such as having a satisfactory working life, are inextricably linked to such factors as access to physical and mental health treatment and prompt treatment of illness or chronic pain. Therefore, amplifying coordination within and across domains to integrate services and programs for children with disabilities is a key step toward achieving positive outcomes (NAEYC, 2007). However, the regulations, funding sources, public oversight, and service-delivery models for health care programs often differ from those for social and human capital development programs. As the levers of programs and policy change are often separated, the committee ultimately decided to address social and human capital development programs separately in this and the following two chapters.
This chapter explores evidence-based and promising health care services and interventions for children with disabilities and their families. It begins with a discussion of the current landscape of health care service delivery, highlighting a variety of ways children may access needed services.
These include home- and community-based services; hospital-based care and clinical programs; subspecialty outpatient care programs; more recent efforts to move toward a more coordinated and integrated approach to service delivery; and the patient-centered medical home (PCMH), a model designed to achieve such a service-delivery approach. A brief discussion of the promise of telehealth for service delivery is also included. Next, the chapter presents the committee’s review of specialized health care services often needed by children with disabilities and their families, including habilitative and rehabilitative services, assistive technology services, mental and behavioral health care services, health promotion services, and services to support the transition from pediatric to adult health care. This is followed by a discussion of federal programs that support access to and quality of health care services and programs, including public health insurance programs, federal agency programs, and cross-disciplinary partnerships for research and training. The final section presents the committee’s chapter-specific conclusions on health care programs and services for children with disabilities. Throughout the chapter are examples of evidence-based and promising programs. The program descriptions provide an overview of targeted populations, goals and desired outcomes, service methodology, supporting evidence, funding, and marketing and outreach where this information was available.
Children with disabilities generally require the same general health care services needed by every child, but often at increased frequency and intensity, and they also require a variety of specialized services that children without disabilities do not generally need. To ensure optimal health outcomes, all children need access to regular primary health care services, including preventive care, diagnostic care, and treatment. Preventive care focuses on maintaining current health, preventing health problems before they happen, and limiting the secondary consequences of existing health problems. For physical health care, this includes regular checkups; physical examinations; immunizations; and genetic or diagnostic screenings, including testing for infectious diseases in populations believed to be at risk for exposure (AAP, 2011; Edwards Lifesciences, 2011) and screenings for secondary health problems. Preventive services related to mental health care are addressed below. Diagnostic care focuses on understanding the cause of current symptoms and diagnosing illness. When a health problem exists, treatment is provided to control, correct, or reduce the problem.
The needs of children with disabilities and their families often are too diverse and extensive to be met solely by the primary care provider.
Although it is not uncommon for primary care pediatricians to treat children with more common potentially disabling conditions, such as severe asthma or motor disabilities originating in the central nervous system, most pediatricians lack adequate knowledge of more rare and complex conditions, including best practices in the treatment and monitoring of these conditions (Perrin, 2002). As a result, many children with disabilities require services from a wide variety of providers. When specialty care is required, the primary care physician will often refer the child to a subspecialty physician, surgeon, or other professional with extensive, specialized training in a specific set of conditions or impairments. Additionally, as discussed in greater detail below, primary care pediatric practices are increasingly shifting to a team-based approach to care.
Home- and Community-Based Services
Children with disabilities, especially those with severe disabilities, often require home- and community-based services—“services or other supports to help people with disabilities of all ages to live in the community”1—to optimize their health, functioning, and well-being while enabling them to live in their homes and participate in their communities. Such services may include a variety of health services, such as home health care (e.g., skilled nursing care; occupational, physical, and speech therapies; dietary management; pharmacy), durable medical equipment, case management, personal care, caregiver and client training, and health promotion and disease prevention (Perrin et al., 2007). Home- and community-based services also include human services that support the daily living needs of children with disabilities, such as personal care (e.g., dressing, bathing, toileting), transportation; home safety assessments, repairs, and modifications; information and referral services; and legal services (CMS, 2017).
Some hospitals, local areas, and states have initiatives to improve the integration of outpatient home- and community-based care for children upon discharge from the hospital through an individualized treatment plan involving home visits, telehealth services, and online health information portals (Gold et al., 2012; Tibballs et al., 2010). In particular, nurses who visit with children and their families at home after discharge have demonstrated their crucial role in helping families overcome problems with their child’s medications, durable medical equipment, and other health care needs (Wells et al., 2017). Use of home nursing services has also been associated with decreased hospital admissions for children with disabilities due to complex, chronic conditions (Berry et al., 2009; Gay et al., 2016).
Through home- and community-based services, children and families can access available health care services that are delivered in what is ideally a comfortable and private environment for the child.
Hospital-Based Care and Clinical Programs
Excluding neonatal hospitalizations and inpatient stays for pregnant teenagers, 2012 saw approximately 1.8 million hospital admissions for children in the United States (Witt et al., 2014). Among children with disabilities, asthma, mood disorders, and epilepsy were the most common admitting diagnoses.
Community hospitals may not have the resources to treat conditions that affect primarily pediatric populations, particularly those related to mental illness (e.g., anorexia, self-harming behaviors). Pediatric patients require extra time and monitoring, appropriately sized medical equipment, specialized medications, and health care providers who are trained in pediatric care to facilitate the child’s recovery (CHA, n.d.). In rural areas, a lack of subspecialty providers and surgeons makes securing urgent medical care for children with disabilities more challenging, often requiring families to seek treatment farther from home in metropolitan areas (Mink, 2017). Urban community hospitals may excel as trauma centers, but often have few resources to meet the psychiatric or specialized needs of children with disabilities (Mink, 2017).
Designed specifically to meet the unique needs of children and adolescents, children’s hospitals are the primary providers of subspecialty health care services required by children with disabilities and often also provide care for adults with childhood onset conditions that require extensive expertise in rare pediatric conditions. On average, a children’s hospital sees 179,908 outpatient visits, 41,913 emergency room visits, and 7,993 inpatient visits per year; performs 97 percent of all transplants; and delivers 90 percent of all pediatric cancer care (CHA, 2015). Although the concentration of specialized services in children’s hospitals can have great benefits for children with severe disabilities and their families, it can also be associated with increased difficulty in accessing such services. Currently, there are approximately 250 children’s hospitals in the United States—only 1 in 20 U.S. hospitals is a children’s hospital. Consequently, children’s hospitals serve much broader geographies than adult hospitals, and children with disabilities and their families, especially those with severe disabilities or complex medical conditions, often must travel long distances to access needed services (CHA, n.d.). When inpatient care is required, children’s hospitals often provide families who must travel long distances with temporary housing through partnerships with organizations such as Ronald McDonald House.
Children with disabilities due to underlying complex, chronic health problems are frequently hospitalized for an acute illness, exacerbation of a chronic illness, or a major operation or procedure intended to improve their health (Burns et al., 2010; Simon et al., 2010, 2012). Dedicated inpatient clinical services staffed by complex-care hospitalists, nurse practitioners, social workers, and case managers work with families to manage the goals of and plans for admission, perform patient intake, and help with the transition of care from the hospital to the home (Cohen et al., 2011; Srivastava et al., 2009; Stucky et al., 2010). Children’s hospitals are increasingly playing a prominent role in providing inpatient clinical services for children with disabilities due to underlying complex, chronic health problems, with substantial increases in hospital admissions over the last two decades (Berry et al., 2012, 2013).
Specialized outpatient and inpatient clinical programs dedicated entirely to children with complex health conditions have emerged in children’s hospitals across the United States (Berry et al., 2011a; Gordon et al., 2007; Stein, 1978; Stein et al., 1983). Programs devoted to assisting children with complex care needs often interface with a wide variety of community providers and entities upon which children and families depend, such as medical equipment vendors and home health agencies (Gordon et al., 2007). Some programs are highly specialized (e.g., a clinic for cardiac transplant patients), whereas others are not (e.g., a clinic for children who have a chronic condition that affects three or more body systems). Some programs are multidisciplinary (e.g., a cerebral palsy clinic staffed with a developmental pediatrician, orthopedic surgeon, physiatrist, and neurologist), whereas others are not. The structure of complex-care programs is highly diverse, driven by local needs, resources, and other considerations. For example, larger metropolitan areas with children’s hospitals may devote significant resources to focus on disease-specific treatment programs, such as pediatric oncology, while more rural programs are constrained by the high cost of and lack of expertise in treating certain disabilities in children.
Subspecialty Outpatient Care Programs
Long-standing programs have for generations served children with severe, condition-specific disabilities, from spina bifida to cystic fibrosis to sickle cell disease. These programs provide more focused assessments, treatments, and community education to improve the lives of their patients. They employ multidisciplinary teams to treat the whole patient; coordinate care for patients, including primary and specialty care; work closely with families to identify the child’s strengths and challenges; address family and child social and psychological issues related to the child’s condition; and, with the family’s consent, may make recommendations to schools or suggest
durable medical equipment that could benefit the child (MDA, n.d.; SBA, 2015). For example, cystic fibrosis centers, working with the support of the Cystic Fibrosis Foundation, almost always provide services to support the transition of young people with cystic fibrosis to adult services. They also address family and child social and psychological issues related to having this chronic condition.2 In addition, the Cystic Fibrosis Foundation provides substantial data on the quality of the performance of the individual cystic fibrosis centers around the country, helping the centers improve their services.
Toward a Coordinated and Integrated Approach to Delivering Health Care Services
As noted earlier, the needs of some children with disabilities and their families are too complex to be met by providers from a single discipline. Children with disabilities are more likely than their peers without disabilities to have frequent need for assistance in coordinating services among health care specialists (Rossi, 2014). Exposure to high-quality coordinated care management programs focused on the whole child can have a positive impact on the health and well-being of all children, reducing their unmet health care needs and improving their health and functional status (Cohen et al., 2011; Jessop and Stein, 1994). Such care may also help prevent exacerbation of chronic conditions and mitigate severity during acute illnesses, ultimately resulting in fewer hospitalizations and less emergency care (Casey et al., 2011; Cohen et al., 2011; Gordon et al., 2007; Klitzner et al., 2010, Palfrey et al., 2004).
Thus, it is important to recognize that certain health care sectors have operated as discrete entities. A common example is the divide between physical and mental health services. In general, mental health services have their own facilities, are administered under separate guidelines and procedures, and have different procedures for evaluating evidence. At the state level, administration of physical and mental health care is often spread across multiple agencies, frequently resulting in independent payment streams for physical and mental health services, so-called carve-outs. “Because of carve-outs,” Ader and colleagues (2015, p. 914) explain, “primary care clinicians often are not reimbursed for mental health diagnoses and are unable to bring onsite behavioral health clinicians,” limiting their ability to provide prevention and early intervention services for mental health diagnoses and increasing fragmented and uncoordinated care.
Notable increases in the prevalence of mental health and neurodevelopmental conditions leading to childhood disability (NASEM, 2015) and
particularly high rates of mental and behavioral disorders among children with physical and neurodevelopmental disabilities (Merikangas et al., 2015) have provided an impetus to integrate mental and behavioral health into pediatric practice. Accordingly, integration of mental and physical health care services is gaining in popularity and professional support. Such efforts include collocating mental health professionals in pediatric practice with the goal of improving early identification of mental and behavioral health conditions and facilitating communication between mental and physical health service providers to treat the whole child (Kelleher and Stevens, 2009). These team services greatly enhance the ability of community health care providers to address and manage children’s disabilities, including mental health conditions (Kelleher et al., 2006). Accordingly, models incorporating mental health services have increased in recent years and are adding to the evidence base for these approaches (Ader et al., 2015; Kennedy et al., 2009). Models for integrating mental health with primary care are discussed in Box 4-1.
The Patient- and Family-Centered Medical Home
To ensure optimal outcomes, decisions on and the delivery of health care services must focus on the child and family; be individualized to meet the child’s needs; and cut across fragmented settings and service sectors to improve the child’s health, functioning, and quality of life. In recent decades, health care services for children and youth have increasingly moved in this direction (Arvantes, 2009).
Given the divide that often exists across health care sectors and the limited knowledge of complex disabling conditions among primary care pediatricians discussed earlier, pediatric health care practices are increasingly adopting a more integrated and coordinated approach to children’s mental, physical, and subspecialty health care.
The PCMH model is one highly regarded approach to coordinated health care service delivery, an approach recognized as effective for delivering various necessary health and supplementary services to children and their families (Adamson, 2011). The American Academy of Pediatrics (AAP) first introduced the term “medical home” in 1967 to describe a centralized authority, typically a doctor’s office, that would obtain and compile pertinent information from all sources and assume primary responsibility for coordinating a child’s health care services (Sia et al., 2004). According to a 1992 AAP policy statement (reaffirmed in 2008):
The medical care of infants, children, and adolescents ideally should be accessible, continuous, comprehensive, family-centered, coordinated, and compassionate. It should be delivered or directed by well-trained physi-
cians who are able to manage or facilitate essentially all aspects of pediatric care. The physician should be known to the child and family and should be able to develop a relationship of mutual responsibility and trust with them. These characteristics define the “medical home” and describe the care that has traditionally been provided by pediatricians in an office setting. (Dickens et al., 1992, p. 774)
Today, the PCMH is an established model for the delivery of health care services to children, especially those with special physical and mental health care needs who require intensive medical services coordinated across multiple providers, as well as a wide range of social supports, to maintain health and functioning. The PCMH is applicable broadly to all children with disabilities, regardless of (1) their age; (2) the etiology or severity of their disabilities; (3) their cognitive and functional abilities; or (4) their health care needs.
The foundation of the medical home lies in pediatric primary care, where the strongest links to community-based supports and services likely exist (Elias et al., 2012). Primary care–based PCMHs are general pediatric practices in community and academic settings that can actively distinguish and offer enhanced care management services for children with disabilities. In part responding to the growth of chronic health conditions, including mental disorders, among children and youth, PCMHs increasingly use multidisciplinary, team-based care to provide comprehensive services (Katkin et al., 2017). For children with disabilities, primary care PCMHs often assign special staff to assist the children (e.g., nurse practitioner, case manager, or parent consultant), offer an extended length of office visits (e.g., 60-minute well-child checks), create written individualized health plans, and expedite referrals and communication with specialists and other members of the children’s health care team. Applying this approach, primary care pediatricians are transforming their physician-based practices to a team care model whereby the pediatrician’s office coordinates with other physicians and nonphysician personnel to help the family access health care, education, and community services that the child needs to achieve positive outcomes.
However, as noted above, primary care physicians in the community often are not equipped to provide high-quality PCMH care to some children with disabilities, especially those children with rare, complicated, and heterogeneous physical conditions, as well as children relying on major medical technology (e.g., tracheostomy and home mechanical ventilation) to survive. Moreover, meeting many of their health needs (e.g., durable medical equipment, specialized therapies, orphan medications) is beyond the scope of primary care (Berry et al., 2011b; McAllister et al., 2009; Sneed et al., 2004). To address these needs, some primary care clinics have embedded pediatric subspecialists to provide enhanced comanagement of children,
facilitating rapid response to the children’s urgent health problems (e.g., exacerbations of chronic conditions that require assistance from specialty providers) (Mosquera et al., 2014). Coordinated subspecialty programs for children with less common but more severe chronic conditions (e.g., childhood cancer, cystic fibrosis) often include physicians and nurses, along with social workers, nutritionists, and specialized therapists.
As noted earlier, children’s hospitals, where pediatric specialty clinicians, therapies, and other health services needed by children with severe disabilities are often regionally centralized, also provide opportune venues for the delivery of comprehensive and coordinated services through a PCMH. Most house child psychiatry and other subspecialty health care services, and many have begun to incorporate pediatric primary care practices as well. Of note, children’s hospitals provide strong linkages to and involvement of psychiatry in inpatient care for children with chronic physical conditions. For children with disabilities due to complex, chronic physical health conditions, consultative outpatient and inpatient clinical programs have emerged in children’s hospitals across the United States (Berry et al., 2011a; Gordon et al., 2007). Providers in these programs move with the children across the care continuum to help meet their health care needs in emergency departments, hospitals, specialty clinics, and primary care clinics, as well as in the children’s homes and schools (Gordon et al., 2007).
Core Attributes of the Patient-Centered Medical Home
Although there are multiple approaches to implementing the medical home, they all revolve around five core attributes. In the PCMH, care should be (1) patient- and family-centered, (2) comprehensive, (3) coordinated, (4) accessible, and (5) committed to quality and safety. These core functions are described in Table 4-1.
The Institute of Medicine (IOM) (2001, p. 40) defined “patient-centered care” as “providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions.” Patient-centered care recognizes that patients are individual and unique, “known as persons in the context of their own social worlds, listened to, informed, respected, and involved in their care—and their wishes are honored (but not mindlessly enacted) during their health care journey” (Epstein and Street, 2011, p. 100). For pediatric patients, the concept of “patient-centeredness” includes both patient- and family-centered care, as the family is the child’s primary source of strength and support (AAP, 2012). Families are resources for information concerning the child’s well-being, and need to be treated as integral partners of the care team (AAP, 2012). Pediatricians who support the interactional relationship between the child’s health and the family structure observe more adherence
|Patient- and family-centered care||Relationship-based care with an orientation toward the whole person that engages the patient in developmentally appropriate ways, in consultation with the family, to individualize care according to the patient’s needs, culture, values, and preferences.|
|Comprehensive care||Meets the large majority of each patient’s physical and mental health care needs through a team-based approach.|
|Coordinated care||Coordinated across all elements of health care, including specialty care, hospitals, rehabilitation centers, home health care, and community services and supports.|
|Access to care||Service delivery is accessible in a manner that is timely and responsive to patient preferences regarding access.|
|Quality and safety||A systems-based approach is committed to ensuring safety, quality, and quality improvement.|
SOURCE: Adapted from AHRQ, n.d.
The AAP (2012, p. 394) defines “patient- and family-centered care” as “an innovative approach to the planning, delivery, and evaluation of health care that is grounded in a mutually beneficial partnership among patients, families, and providers that recognizes the importance of the family in the patient’s life.” This approach is based on six core principles for patient- and family-centered care, defined by AAP in a 2012 policy statement (see Box 4-2). In summary, these principles are respecting individuality, organizational flexibility, information sharing, formal and informal support across the life span, collaboration, and recognizing and building on the child’s and family’s strengths.
Patient- and family-centered care entails the mutually beneficial and respectful inclusion of families in information sharing, decision making, and treatment (Dunst et al., 1997; Hanson et al., 1997; Moretz and Black, 2007; Smith, 2002). As discussed in Chapter 2, the current structure of health care and other services for children with disabilities places great demands on parents and families. Accordingly, parents need to be involved in partnerships with relevant professional staff, agencies, and community organizations in ways that are empowering and are characterized by mutual
respect, acceptance, support, trust, openness, and understanding of cultural variations and diversity (Dunst and Trivette, 1990). As noted in the AAP (2012) core principles (see Box 4-2), information sharing extends beyond simply providing information to the family, stressing the need to take into account the child’s and family’s health literacy (opportunities for improving health literacy are discussed below). The strengths, capabilities, and weaknesses of the child and family need to be recognized, and parents enabled with the knowledge and skills to be active participants in their child’s care and to promote optimal developmental outcomes. Additionally, given the decentralized and disconnected nature of health care in the United States, such knowledge and skills are critical to helping parents navigate the array of services and policies at the local, state, and national levels as they currently exist.
These objectives can be accomplished by engaging families in meaningful problem-solving partnerships. Sensitivity to families’ needs and unique
situations can help those who work with families of children with disabilities support and improve the functioning of the child. A recent systematic review3 found that “family-centered care for children with special health care needs is associated with improved health and well-being, improved satisfaction, greater efficiency, improved access, better communication, better transition services, and other positive outcomes” (Kuhlthau et al., 2011, p. 136), and such care has previously been shown to improve child and maternal mental health (Stein and Jessop, 1984, 1991).
Having a PCMH is associated with improved access to family support services, which empower families to cope with their child’s disability. Some PCMHs embed community care managers, funded through public programs such as Medicaid, to serve children with disabilities and their
3 The authors examined the literature (N = 24 studies) assessing the relationship between family-centered care and patient and family outcomes; to be included, studies needed to incorporate a focus on family–provider partnerships.
families. On-site and in-person, the care managers assist the PCMH providers with care coordination activities that, in particular, involve interaction with insurance personnel to meet the child’s health care needs (e.g., prior authorizations for medications, approval for durable medical equipment). Care managers may facilitate treatment adherence by accessing Medicaid claims data for medication refills, make home visits to educate families and ensure the safety and stability of the child’s home environment, and communicate and coordinate with the child’s subspecialty providers. Such efforts can increase the use, capacity, and value of primary care for children with disabilities.
Exposure to high-quality care management may increase outpatient office visits for the children who receive it by as much as 70 percent because more visits are necessary to meet the children’s health care needs and optimize their health (Berry, 2015). At the same time, however, high-quality care management may help prevent exacerbations of the children’s chronic conditions, as well as mitigate the severity of acute illnesses that they experience. As a result, the children may require less hospital and emergency department care. High-quality care management programs have been associated with reductions in hospital admissions (26–59 percent), the number of days spent in the hospital (52 percent), and emergency department visits (18–55 percent) (Casey et al., 2011; Cohen et al., 2011; Gordon et al., 2007; Klitzner et al., 2010; Mosquera et al., 2014; Palfrey et al., 2004). High-quality care management also increases the family’s knowledge of their child’s health problems, helps the family cope with those problems, reduces the familial caregiving burden (Okumura et al., 2009), and improves family satisfaction with care (Cohen et al., 2011).
Large-scale studies, frameworks, and incentives of PCMH implementation have focused primarily on adults (Williams et al., 2012). There is limited evidence on PCMH implementation for children (van Cleave et al., 2016), especially for improving care through team-based coordination. Most evaluations of the PCMH are cross-sectional—they focus on whether attributes of the PCMH are associated with better health and functioning outcomes. National surveys have been used to assess whether children have access to a PCMH and whether they receive the care associated with PCMH principles. For example, the National Survey of Children with Special Healthcare Needs evaluates access to a PCMH based on five criteria outlined by the Maternal and Child Health Bureau (MCHB): “(1) having a personal doctor or nurse, (2) having a usual source for sick and well care, (3) receipt of family-centered care, (4) no problems getting needed referrals, and (5) receipt of effective care coordination when needed” (MCHB, 2015, p. 93). These surveys correlate the use of a PCMH with family-reported health outcomes (e.g., health, functioning, hospitalizations) for children. Regarding trends, retrospective pre- and posttest methods (e.g.,
interrupted time series) have been used to assess associations of PCMH exposure with health and functioning. Most of these studies are limited by not using a control group (i.e., children not exposed to a PCMH) when reporting outcomes. A small number of PCMH studies have included a control group, using the methods of prospective, randomized clinical trials. Using these methods, children have been randomized to receive or not receive PCMH care and followed prospectively over time to assess their health and functioning.
Benefits associated with the PCMH include better developmental screening for children, which can result in early detection of a mental and/or physical health condition that could result in disability if not adequately recognized and treated (Guevara et al., 2013). Having a PCMH is associated with improved chronic disease management (Bodenheimer et al., 2002), including better integration of primary care and specialty care health services (Asarnow et al., 2015). This improved management reduces the children’s unmet health care needs and improves their health and functional status (Cohen et al., 2011). For example, in children with attention-deficit hypereactivity disorder (ADHD), the PCMH has been significantly associated with being less likely to have an unmet health need and having fewer missed school days (Asarnow et al., 2015).
One of the key features of care within a medical home is that a well-qualified provider is delivering or directing all aspects of care. When a child has needs for additional services, the PCMH coordinates the care and ensures that the child’s medical, developmental, educational, and psychological needs are being met. Yet while the medical home has the responsibility to ensure that children get referrals and care coordination when needed, many external factors may challenge the medical home in achieving its goals. For children with disabilities, a medical home cannot function independently because children with disabilities tend to need a vast array of services and supports. The medical home can be a connector and facilitator of care only when the other needed services are available. Thus, the concept of the health neighborhood, the natural outgrowth of a well-designed PCMH, is essential for children with disabilities. The health neighborhood consists of the PCMH and other health care providers (e.g., hospitals, pharmacies, diagnostic services, ambulatory care providers, rehabilitative care providers), public health agencies, schools, and social service providers all working to help the child achieve positive near- and long-term health and functioning outcomes (AHRQ, 2011). A functioning health neighborhood centers on the child in her or his medical home and is organized in such a way that needed services are available and when accessed, communicate, coordinate, and collaborate with the medical home (Meyers et al., 2010). In some situations, the locus of care is in a traditional community-based setting, while in others, it is at a complex care clinic or specialty clinic in
a pediatric tertiary care setting, and in some cases, a hybrid model may be the best option. Having a clear delineation of roles and responsibilities of the team members in the health neighborhood and information sharing and goal-directed care organized in a care plan are among the hallmarks of a well-functioning health neighborhood.
Recent advances in telecommunications technologies provide exciting and promising opportunities for the delivery of health care services. The Health Resources and Services Administration (HRSA) (2015) defines telehealth as “the use of electronic information and telecommunication technologies to support and promote long-distance clinical health care, patient and professional health-related education, public health and health administration.” Telehealth is not a specific service, but rather a collection of modes and methods for remote delivery of health care services, such as physical and mental health care, rehabilitation services, and health education. Health care professionals must adhere to the same ethical, medical, and privacy standards when providing telehealth services.
Telehealth can help children with disabilities and their families access health care services in a timely manner and connect directly with specialty service providers whom they might otherwise be unable to access. As noted earlier, for example, accessing specialty health care is particularly difficult in rural areas, where, with some exceptions, few pediatric subspecialists live and work (Syed et al., 2013). Accessing such care can also be difficult in areas of high population density if subspecialists either are not seeing new patients or refuse to accept Medicaid as a form of payment. Synchronous telehealth uses live video to provide real-time, two-way interaction between the patient and service provider. Asynchronous telehealth, also referred to as “store-and-forward,” enables the “transmission of recorded health history (for example, pre-recorded videos and digital images such as x-rays and photos) through a secure electronic communications system to a practitioner, usually a specialist, who uses the information to evaluate the case or render a service outside of a real-time or live interaction” (TRC, n.d.).
Telehealth also includes remote patient monitoring (RPM), the remote collection and monitoring of personal health and medical data, such as vital signs (e.g., heart rate, respiration rate, blood pressure, body temperature), weight, activity level, and sleep data (Malasinghe et al., 2017; TRC, n.d.). The remote delivery of health care services and RPM have been further enhanced and made more accessible by modern advances in mobile communication systems (e.g., cellular connectivity, Wi-Fi) and devices (e.g., smart-phones, tablets, wearable devices), a domain of telehealth referred to as mHealth (or mobile health). However, the emerging field of mHealth goes
beyond such direct services. mHealth enables and encourages children with disabilities and their families to play an increased role in their own care, from monitoring wellness indicators to managing chronic diseases, through the use of smartphone apps and more accessible and affordable wearable devices. It also takes advantage of mobile messaging abilities, such as text messaging and push notifications, to provide a range of health care–related information and services, from targeted health education, promotion, and intervention to universal public health alerts (TRC, n.d.; TTAC, n.d.).
Research indicates that telehealth used in this manner could be useful for providing access to mental health services among populations that ascribe stigma to mental health disorders.4 Although the direct costs of such services may be similar to those of in-office visits, they markedly decrease family costs for transportation, time off from work, or care for other children. A recent meta-review of 80 systematic reviews covering a range of telehealth models found that many indicated similar quality whether the service was provided via telehealth or usual care, and the “clinical effectiveness of telehealth care interventions for patients with long-term conditions appeared to be greatest in those with more severe disease at high-risk of hospitalisation and death” (McLean et al., 2013, p. 1). However, McLean and colleagues (2013) also note a number of limitations in the existing literature, including inconsistent terminology; lack of precision in descriptions of the interventions; short-term and small sample sizes in many of the studies examined in the original systematic reviews; and “poor representation of particular groups, such as those with multiple comorbidities, cognitive impairment, disabilities or social problems” (pp. 7–8).
Other telehealth programs work to improve local providers’ training and capacity to deliver high-quality, up-to-date services in smaller communities. As an example, the Missouri Autism ECHO (Extension for Community Healthcare Outcomes) program, supported by MCHB and the Autism Speaks® Autism Treatment Network, began in Missouri as an effort to help community practitioners across the state learn skills in the assessment and management of autism spectrum disorders. A team of autism subspecialists in Columbia, Missouri, including pediatric developmental and behavioral subspecialists, psychologists, nutritionists, and social workers, organizes biweekly televised conferences during which providers present anonymized case studies to encourage discussion with others on best strategies for care management. The Missouri ECHO program has now expanded to an additional 10 states, and similar programs exist for remotely treating a variety of health conditions, such as juvenile diabetes and epilepsy (Autism Speaks, 2016).
As noted throughout the above discussion, children with disabilities often need an array of specialized health care services. Although each child’s needs will differ based on a variety of factors, including type and severity of impairment, personal factors, and social-environmental factors, the committee identified a number of specialized services that large numbers of children with disabilities require. These services fall into three primary domains: habilitative and rehabilitative services, mental and behavioral health care services, and health promotion services. Services within each of these domains are discussed here.
Habilitative and Rehabilitative Services
Habilitative and rehabilitative services are provided to children and youth who have developmental disorders (i.e., slowing, cessation, or deviation in development) or have experienced temporary or permanent loss or reduction of functioning secondary to an injury or illness. Habilitative services help individuals “keep, learn, or improve skills and functioning for daily living,” while rehabilitative services help individuals “keep, get back, or improve skills and functioning for daily living that have been lost or impaired” (HealthCare.gov, n.d.). Habilitative and rehabilitative services may include physical therapy, occupational therapy, and speech-language therapy. This section focuses primarily on physical and occupational therapy services; because speech and language therapy services are most commonly delivered in school-based settings and to avoid duplication, they are discussed in Chapter 5.
Physical therapy addresses “impairments, activity limitations, and participation restrictions related to (1) conditions of the musculoskeletal, neuromuscular, cardiovascular, pulmonary, and/or integumentary systems or (2) the negative effects attributable to unique personal and environmental factors as they relate to human performance” (APTA, n.d.-b). Occupational therapy helps individuals participate in the daily activities they want and need to do (occupations). It helps people function in all of their environments (e.g., home, work, school, community) and addresses the physical, psychological, and cognitive aspects of their well-being through engagement in occupation (AOTA, 2013). Children in need of therapy services may be identified through physician referral, direct referral from their caregivers (in some states), or team members responsible for their individualized education programs (IEPs) (ECTA, 2017).
Once therapeutic services have been requested, a therapist evaluates the child to determine the appropriate type, frequency, and intensity of services.
Services can be delivered in a variety of settings, including hospitals, clinics, outpatient practices, and schools. School-aged children and youth may receive habilitative and rehabilitative services in school under the Individuals with Disabilities Education Act (IDEA) Part B. The nature and goals of the services may vary depending on whether they are provided through the child’s school or as part of the child’s medical care. For example, services provided under IDEA, including therapy services, must focus on enhancing the child’s ability to participate in the educational curriculum, as discussed in Chapter 5, whereas therapy services provided in a medical context may focus on remediation of impairments or functioning not directly related to the child’s education.
Over the past two decades, physical and occupational therapy have shifted to become more functionally and goal oriented (Law and Darrah, 2014). This shift reflects in part growing evidence that impairment-focused interventions do not necessarily yield significant changes in children’s function. In contrast, task-oriented interventions that emphasize improving the performance of daily life skills rather than altering the underlying impairments are supported by a growing body of evidence (Graham, 2014; Law et al., 2011; Sakzewski et al., 2012). Task-oriented therapy encourages and supports participation in daily activities, which generally results in more frequent practice of emerging skills and better carryover into real-world situations (Gannotti et al., 2014). In other words, across all types of disabilities, functional improvements are more likely to occur when the goals of therapy are clearly delineated, relevant to the child’s daily life, and measurable (Bower et al., 1996).
For sustained positive benefits to be achieved from therapeutic interventions, activities that are the focus of the therapy require sustained practice in the child’s environment and support by the parents or other caregivers (Sneed et al., 2004). However, access to these services for children with disabilities varies considerably, and substantial unmet needs exist across the country (Benedict, 2006). In addition, the likelihood of deriving maximal benefit from habilitative therapies varies according to the patient’s age (early interventions show larger effects [e.g., Spittle et al., 2015]) and type and severity of disability (Park and Kim, 2014).
Additionally, a growing body of research documents the extent to which the environment affects the participation of children with diverse disabilities in home, school, and community (Anaby et al., 2013). A holistic5 child- and family-centered approach is valued by parents and is associated with improved therapy outcomes (Case-Smith et al., 2013; Gillett,
2004; Kingsley and Mailloux, 2013; Kreider et al., 2014; Morgan et al., 2013). Therefore, another major role of pediatric occupational and physical therapists is to work with children and families to identify the barriers preventing children with disabilities from doing the activities they want or need to do and to provide means of removing or circumventing these barriers. Solutions need to be individualized to capitalize on the strengths and resources of both the child and family and accommodate particular limiting features of the child’s condition. In the school environment, physical and occupational therapists work with students’ IEP teams to suggest accommodations and practices that can support learning and participation. For instance, a physical or occupational therapist may recommend that a child with autism spectrum disorder sit on a ball chair to reduce “out of seat behaviors,” or may tape off the child’s personal space on the floor for group activities (APTA, n.d.-a).
The specific form of therapy may vary depending on the nature of the child’s functional difficulties. Neuromotor task training (NTT) is one example of an evidence-based intervention for children with motor coordination problems. NTT emphasizes the integrated nature of cognitive action planning and motor sequence initiation and execution through task-oriented interventions (Niemeijer et al., 2007). A 2007 randomized controlled trial explored the impact of NTT on improving the coordination skills of children with developmental coordination disorder (Niemeijer et al., 2007). Children receiving NTT scored significantly higher than the control group on tests of pediatric motor functioning and showed improved quality of movement patterns, while quality of movement patterns for the control group deteriorated. Cognitive orientation to daily occupational performance (CO-OP) (Smits-Englesman et al., 2013) also addresses motor coordination difficulties by teaching children a problem-solving strategy that helps them discover better solutions to movement problems. For children with hemiplegic cerebral palsy, there is some evidence that intensive activity-based, goal-directed interventions such as constraint-induced movement therapy and bimanual training, as well as goal-directed home occupational therapy programs, are effective in improving skills (Sakzewski et al., 2014).
In recent years, occupational therapy practitioners have increasingly taken advantage of telehealth technologies to assist clients with developing skills; using assistive devices; and creating new routines for participating in school, home, or community activities. While preliminary research indicates that occupational therapy services received via telehealth are effective, a variety of barriers currently hinder greater implementation of this model. The greatest barriers include an inconsistent reimbursement structure for services delivered, variation among state laws, restrictions on providing services across state lines, and limited understanding of the technology among practicing occupational therapists (AOTA, 2013; Cason et al., 2012).
Assistive Technology Services
Many children with disabilities benefit from the use of assistive technology devices to accommodate for a lack of functioning. The term “assistive technology device” was first defined at the federal level6 as “any item, piece of equipment or product system—whether acquired commercially, modified, or customized—that is used to increase, maintain, or improve functional capabilities of individuals with disabilities” (Wise, 2012). Physical, occupational, and speech therapists, as well as pediatric rehabilitative medicine specialists, neurodevelopmental pediatricians and other clinicians, may recommend the use of equipment to aid children in their daily lives.
Assistive technologies may partially or fully mitigate the effects of impairments on everyday completion of daily activities, allow a child to participate successfully, and lessen the need for a caregiver to provide direct assistance (Nicolson et al., 2012; Wise, 2012). For example, nearly one-third of children aged 12–18 wear corrective lenses for visual impairments, making eyeglasses the most ubiquitous assistive device used by children. For children with severe but correctable visual acuity deficits, wearing glasses keeps them from having activity limitations or being restricted in participation (Kemper et al., 2007). As is true for corrective eyewear, a team approach to evaluation for, procurement of, and training in the use of most assistive devices is necessary. These devices can be highly technologically advanced (e.g., a wheelchair controlled by eye gaze) or quite simple (e.g., a wooden board used to help someone with paralysis transfer from one surface to another). Table 4-2 provides examples of assistive technologies for each of the areas of activities and participation in the International Classification of Functioning, Disability and Health (ICF) and describes how a child’s functioning may be improved with the use of the technologies.
Mental and Behavioral Health Care Services
As discussed in Chapter 2, disabilities related to mental health impairments are among the most prevalent disabilities in children, with notable increases in prevalence in recent years. Additionally, children with disabilities due to physical impairments are at increased risk for developing comorbid or co-occurring mental health impairments. Accordingly, mental and behavioral health services—including prevention and early intervention services and treatment services—are vitally important to a large number of children with disabilities. These services are discussed.
6 1988 Technology-Related Assistance for Individuals with Disabilities Act (Public Law 100-407).
|ICF Area of Activities and Participation||Examples of Adaptations|
|Learning and applying knowledge||A child who is blind learns to read Braille. Books are adapted to allow those without sight to read using their fingers.|
|General tasks and demands||A teenager with memory problems after a traumatic brain injury might need a memory aid. Medication dispensers that are adapted with alarms help people remember to take their medications on time.|
|Communication||A child with autism might benefit from an augmentative communication device to allow her or him to express themselves successfully.|
|Mobility||A child with spina bifida might need a walker or crutches to walk because of lower-extremity weakness.|
|Self-care||A child with cerebral palsy might need a feeding tube because of the inability to eat safely as a result of dysphagia.|
|Domestic life||A child with arthritis might need a jar opener to be able to make a peanut butter and jelly sandwich because of limitations in joint range of motion, pain in the hands, or reduced grip strength.|
|Interpersonal interactions and relationships||A child with severe anxiety might need assistance interacting with strangers in the form of a biofeedback app.|
|Major life areas||A child with tetraplegia might need a power wheelchair to attend school and get on and off an adapted school bus.|
|Community, social, and civic life||A child with a limb deficiency might need a special handle for paint brushes to participate in crafts at the local fair.|
Preventive and Early Intervention Services for Promoting Positive Mental, Behavioral, and Social Outcomes
Preventive and early intervention services aim to engage individuals before the development of serious mental illness (or serious emotional disturbance), thus preventing the need for extended mental health treatment in the future by facilitating access to services and supports at the earliest signs of mental health struggles (New York State Department of Health, 2013).
Such services address risk factors for future mental health problems before a specific disorder has been identified (youth.gov, n.d.). Research has consistently shown that the onset of many mental health disorders occurs during childhood and adolescence, and screening, prevention, and early intervention services have been shown to be effective with various impairments and for different age groups, particularly adolescence into young adulthood.
The National Research Council (NRC) and IOM report Preventing Mental, Emotional, and Behavioral Disorders among Young People: Progress and Possibilities (NRC and IOM, 2009) provides an extensive review of the research on prevention and preventive interventions, identifies risk factors for developing mental, emotional, and behavioral disorders, and examines specific preventive interventions. Such interventions include those aimed at modifying risk; promoting protective factors; and reducing the incidence of common mental, emotional, and behavioral disorders, including substance abuse. Recognizing that many contextual factors impact child development, preventive interventions target both children and families in a variety of settings, including the home, school, and community. The report notes “strong empirical support for interventions aimed at improving parenting and family functioning,” and states that “interventions focused on reducing aggressive behavior, avoiding substance use, reducing HIV risk, securing permanent foster care placement, and dealing with difficult family situations such as divorce have all produced beneficial effects” (NRC and IOM, 2009, p. 189). Given the high prevalence of disability due to mental health impairments among children and the increased risk for comorbid mental health conditions among children with physical disabilities, preventive interventions targeting improved mental, behavioral, and social outcomes are of great importance to many children with disabilities.
Preventive interventions targeting mental, behavioral, and social outcomes may be universal, selective, or indicated. Universal preventive interventions are “targeted to the general public or a whole population that has not been identified on the basis of individual risk.” Selective preventive interventions are “targeted to individuals or a population subgroup whose risk of developing mental disorders is significantly higher than average,” and can be based on imminent or lifetime risk, generally identified by biological, psychological, or social factors. Indicated interventions are “targeted to high-risk individuals who are identified as having minimal but detectable signs or symptoms foreshadowing mental, emotional, or behavioral disorder, or biological markers indicating predisposition for such a disorder, but who do not meet diagnostic levels at the current time” (NRC and IOM, 2009, Box 3-1).
Preventive interventions vary not only by the size of the target population (i.e., universal versus targeted versus individual) and level of intensity, but also according to the child or youth’s developmental progress (NRC
and IOM, 2009). For instance, life skills training during elementary school may prepare children for the upcoming social pressures of adolescence, while high school interventions may focus on prevention and recognition of symptoms of eating disorders or substance abuse problems.
Aggressive behavior during childhood is one major risk factor for both externalizing (e.g., ADHD, conduct disorders, impulse control disorders) and internalizing (e.g., depression, anxiety) mental health disorders (Kellam et al., 2008; Tremblay and Schaal, 1996). Research suggests that early age of onset across mental health disorders is “associated with a longer duration of untreated illness, and poorer clinical and functional outcomes” (de Girolamo et al., 2012, p. 47). Failure to identify and treat aggressive and/or antisocial behavior in its early stages jeopardizes later health and functioning outcomes for these individuals, as they are more likely to drop out of school, have negative encounters with the justice system, and have difficulty maintaining employment (Murrihy et al., 2010). Examples of evidence-based prevention and early intervention programs designed to promote positive emotional, behavioral, and social outcomes are provided in Box 4-3.
A variety of preventive interventions also are commonly aimed at decreasing risk factors for and the incidence of substance use disorders (SUDs). Universal strategies, such as public education, use of media, and school-based campaigns, help discourage substance use among broad populations. If aimed at the general public at key transition points, such as the transition from elementary to middle school, such universal prevention initiatives can produce beneficial effects even among high-risk children and their families (NIDA, 2003). Selective strategies, such as screening programs and gatekeeper training for adults who work with at-risk youth, aim to prevent the development of SUDs among specific subsets of the population. Screening for SUDs differs by type of substance, age group, and administering agency, and helps identify children and youth who could benefit from substance use treatment or require more in-depth assessments. The use of various screening tools for identifying potential drug and alcohol use and abuse is common; however, evidence for such screening tools is generally based on expert opinion, as “no clinical trials support the efficacy of screening during clinical encounters” (Knight et al., 2010, p. 104). Initiatives may also target parents and families of children at increased risk for substance use or abuse. For example, Guiding Good Choices7 educates parents on risk factors associated with SUDs and on strengthening family bonding in five 2-hour sessions focused on setting clear expectations, monitoring behavior, and maintaining discipline (NIDA, 2003; TN.gov, 2016). Less severe cases may benefit from brief, on-the-spot interventions to prevent
7 Formerly known as Preparing for the Drug-Free Years.
risky substance use behaviors from becoming full-fledged SUDs (SAMHSA, 2011). Regardless of the level of prevention, the National Institute on Drug Abuse (NIDA) (2003) recommends that all programs be long-term and provide repeated interventions (i.e., booster programs) to reinforce the original prevention goals. For instance, it has been shown that gains from middle school prevention programs diminish absent follow-up programs in high school.
Screening, briefing, and referral to treatment (SBIRT) is an evidence-based practice adopted by many states to prevent problematic use or abuse of or dependence on drugs or alcohol. As an early intervention, SBIRT targets individuals with moderate to high risk of substance use, providing brief interventions on one or multiple occasions before there is a need for more extensive or specialized treatment (TN.gov, 2016). The goal of SBIRT is to prevent addiction in individuals whose use may not have reached the diagnostic level of SUD, as well as to refer individuals displaying symptoms of SUD for more rigorous treatment. Since SBIRT was first implemented in 2003, 19 percent of screened individuals have been given brief interventions or short-term treatments or been referred for more comprehensive treatment services (TN.gov, 2016). SBIRT is not universally implemented by primary care physicians because it takes time to administer; therefore, ongoing studies are examining the efficacy of computer-based brief SUD interventions among vulnerable populations. An SBIRT app also was developed at Baylor College of Medicine to support prevention work by counselors, physicians, and other health care workers (TN.gov, 2016). Efforts to implement SBIRT are currently under way across universities in Tennessee, with funding from the Substance Abuse and Mental Health Services Administration (SAMHSA), to identify individuals who require treatment for SUDs. While approximately 7 percent of individuals screened to date have been referred for further treatment, the screening procedures adopted by the universities are not currently designed to screen for co-occurring mental health disorders.
Mental and Behavioral Health Treatment Services
A wide variety of mental and behavioral health treatment interventions are targeted at children and youth who have demonstrated symptoms of or disability due to mental health impairment. Treatments include psychotherapeutic interventions, psychopharmacological interventions, and some combination of the two. Psychotherapy is defined as “the informed and intentional application of clinical methods and interpersonal stances derived from established psychological principles for the purpose of assisting people to modify their behaviors, cognitions, emotions, and/or other personal characteristics in directions that the participants deem desirable”
Assessment and therapy services may be delivered by a variety of professionals, such as psychologists; clinical social workers; psychiatric
or mental health nurse practitioners; and other master’s-level counselors, clinicians, and therapists (NAMI, 2017). Therapy services may be provided individually, in groups, or to the family and generally occur in a variety of settings, ranging from private practices, community mental health centers, and schools to emergency rooms, hospitals, and residential treatment
centers. Generally, prescribing of medications is limited to medical doctors, primarily psychiatrists and primary care physicians. In some states, psychiatric, mental health, or family nurse practitioners are also qualified to prescribe medications, with varying degrees of supervision by psychiatrists or physicians.
The use of psychotherapeutic approaches with children has a strong evidence base, and a wide variety of psychotherapeutic approaches, techniques, and interventions has been found effective for improving outcomes for children with mental health impairments. The Society of Clinical Child and Adolescent Psychology (APA, 2008) has identified seven evidence-based therapeutic approaches for use with children: applied behavioral analysis, behavior therapy, cognitive-behavioral therapy, cognitive therapy, family therapy, interpersonal psychotherapy, and organizational skills training. Brief definitions of each are provided in Table 4-3.
Psychopharmacological interventions are widely used for various mental health conditions. Although a review of the evidence on specific medications used to treat pediatric mental health issues is beyond the scope of this report, it is important to discuss briefly the use of clinical practice guidelines in psychopharmacological decision making. Clinical practice guidelines are “statements that include recommendations intended to optimize patient care . . . informed by a systematic review of evidence and an assessment of the benefits and harms of alternative care options” (IOM, 2011, pp. 25–26). One such approach is the use of medication algorithms, which provide a decision-making framework to assist clinicians in prescribing medications for mental illness and impairment. Although some critics are concerned that such algorithms may limit the clinician’s role in decision making, Hughes and colleagues (2007) note that “medication algorithms do not limit clinicians’ ability to use their clinical judgment; rather they provide a framework for decision making” (Hughes et al., 2007, p. 682). When used in this way, an evidence-based approach to decisions on medication management as a component of an overarching disease management strategy is promising.
Among the most prominent examples of medication algorithms are those created through the Texas Medication Algorithm Project (TMAP). Initiated by the Texas Department of Mental Health and Mental Retardation and Texas academic medical centers, the project brought together academic clinicians and researchers, practicing clinicians, administrators, consumers, and families to create consensus guidelines for prescribing medication for a variety of mental health impairments, including evidence-based guidelines for pharmacological treatment of childhood major depressive disorder (MDD) (Hughes et al., 1999, 2007) and childhood ADHD (Pliszka et al., 2000, 2006). However, it is important to note a number of limitations in the creation of such algorithms, including the lack of rigorous scientific studies
|Evidence-Based Treatments (conditions effective for in parentheses)||Description|
|Applied behavior analysis (ABA) (ASD)||Individualized, adult-led intervention that uses learning principles to teach socially significant behaviors in real-life settings. Addresses a variety of domains, such as communication, social skills, self-management, cognition, and preacademic skills (e.g., imitation, matching, letter and number concepts).|
|Behavior therapies (ADHD, anxiety, ASD)||Widely varying set of approaches that focus primarily on changing problem thoughts and behaviors that may be unknowingly or unintentionally rewarded within the child’s environment. Behavior therapies help parents and children learn to promote desirable behaviors and reduce unwanted behaviors.|
|Cognitive-behavioral therapy (CBT) (anxiety, behavior problems, depression, PTSD, substance abuse)||Short-term treatments that focus on teaching youth and/or their parents specific skills; focus is on the ways a child’s or adolescent’s thoughts, emotions, and behaviors are interconnected, and how they each affect one another.|
|Family therapies (anorexia, obesity, substance abuse)||Treatments that view psychological problems and their treatment in terms of the interactions among family members and focus on relationship patterns and communication among family members. Families are seen as an integrated, interconnected unit in which psychological functioning is influenced by every family member individually and collectively as an entire system.|
|Interpersonal psychotherapy (depression)||Short-term treatment for child and adolescent depression based on the idea that depression occurs in the context of an individual’s relationships. Helps the child identify areas in need of skill building to improve relationships and decrease depressive symptoms.|
|Multi-systemic therapy (MST) (adolescent antisocial behaviors, delinquency, and substance abuse)||Intervention for youth with significant antisocial behaviors, delinquency, and substance problems. These behaviors are appraised within the larger context of multiple systems of influence, including various social-ecological factors such as individual, family, peer, school, and community influences.|
|Organizational skills training (ADHD)||Intervention that focuses on training children with ADHD to overcome organizational difficulties by teaching them organizational, time management, and planning skills.|
NOTE: ADHD = attention-deficit hyperactivity disorder; ASD = autism spectrum disorder; PTSD = posttraumatic stress disorder.
SOURCE: Adapted from Society of Clinical Child and Adolescent Psychology, n.d.
demonstrating the efficacy and safety of medications for childhood MDD, the lack of research on antidepressant combinations or augmentation for treatment-resistant individuals, and the lack of randomized controlled trials of the algorithm itself (Hughes et al., 2007; Pliszka et al., 2006). Also of concern, particularly for children receiving Supplemental Security Income (SSI) benefits, is that the large majority of drug trials in child and adolescent mental health have not recruited children from lower-income families or children with comorbid medical conditions. Evidence-based medication therapies may work for these children; however, direct evidence of their efficacy in low-income, high-risk populations is lacking.
Health Promotion Services
Health promotion for children and adolescents has been defined as “those strategies that promote child and young people’s health, prevent disease in children and young people, and foster equity for children and young people, within a framework of sustainable development” (Korin, 2016, p. 7). A high-quality health promotion program for children with disabilities aims to prevent or reduce comorbid conditions attributed to insufficient physical activity or poor nutrition (e.g., obesity, hypertension, pressure sores), provide an opportunity for leisure and social enjoyment, and enhance quality of life and functional independence by reducing environmental barriers to good health (Rimmer, 1999). Many of these goals are similar to those of health promotion programs for all children; however, children with disabilities may rely more on these interventions as studies show children with disabilities are less likely to participate in spontaneous physical activity relative to their typically developing peers (Rimmer et al., 2004).
Research has clearly and consistently demonstrated links between regular physical activity during childhood and adolescence and lifelong health and well-being. A recent systematic review found physical activity to have benefits for school-aged children across a variety of health measures, including lower blood pressure, increased bone density, reductions in the number of anxiety and depression episodes, lower body mass index, and fewer injuries. Included studies also suggest that increased physical activity leads to increased health benefits, and that even moderate levels of physical activity are beneficial to the health of high-risk children (Janssen and LeBlanc, 2010).
Recent years have seen growing interest in better understanding the relationship between participation in physical activity and health outcomes for children with disabilities. A recent systematic review (January
2000–January 2016) found that studies were primarily descriptive in nature, “identifying what PA [physical activity] participation looks like and what it means to disabled children, indicat[ing] our understanding of this construct as an index of health is still in its early stages” (Ross et al., 2016, p. 7 [emphasis in original]). Reviewed studies generally took one of two approaches: framing physical activity in the context in which it occurs or “as a multi-dimensional construct . . . described in terms of both performance outcomes (frequency and intensity of physical involvement in PA) and participation outcomes (such as social interactions, perceptions of inclusions or engagement, enjoyment)” (Ross et al., 2016, p. 8). A more comprehensive understanding of the impact of opportunities for physical fitness on the health and well-being of children and youth with disabilities will require innovative research approaches to understand this interaction. One important approach to providing such opportunities—the fitness and health programs of the Special Olympics—is described in Box 4-4.
Reproductive Health and Sexuality Education
For the majority of youth, evidence-based sexuality education is provided in public schools, and it may be the only way some youth learn the science behind puberty and reproduction. However, pediatricians and women’s care specialists play a critical role in ensuring the reproductive health of youth and young adults with disabilities. These health care providers write prescriptions for contraceptives, treat sexually transmitted infections (STIs), and ideally have frank discussions with their maturing patients about how to maintain their sexual health. It is well known, however, that the extent to which adolescents and young adults with intellectual disabilities receive sexuality education, either at home, from their pediatrician, or in schools, is not commensurate with the extent to which they engage in sexual activity (Breuner and Mattson, 2016; Schaafsma et al., 2015). Disability advocates are raising awareness that youth with disabilities are likely to receive less sexuality education than their peers (Murphy and Elias, 2006), and continue to lobby for schools not to remove them from sexual health lessons when scheduling special education services and therapies (AFY, 2017).
Making developmentally appropriate resources available to youth with disabilities is important to help them understand the facts behind their changing bodies and learn about sexual relationships and intimacy to facilitate positive social outcomes. For youth and young adults, other tools for accessing information on human sexuality and reproduction apart from speaking with parents or a physician are available. Online tools available to all youth, in particular, can provide curious youth with disabilities with access to helpful, objective information on their sexual health. For example, The Johns Hopkins University teamed up with MTV’s It’s Your (Sex) Life
website to offer STI and HIV testing kits to youth 14 and older.8 Planned Parenthood® also offers an online chat tool to help teens resolve their questions related to sexual activity and reproductive health (KFF, n.d.).9
Sexuality health programs and interventions designed specifically for youth with intellectual disabilities, including intervention mapping, have yielded positive results in increasing youth with disabilities’ anatomical and functional knowledge of human reproduction (Bartholomew et al., 2011). Other interventions have targeted behavior modification (e.g., learning strategies for refusing unwanted sexual contact) or helping youth identify and articulate their personal attitudes toward sexuality (Schaafsma et al., 2015). In total, a review conducted by Schaafsma and colleagues (2015) found that individuals with intellectual disabilities had acquired new sexuality knowledge from pre- to postintervention assessment in 13 studies. Determining an evidence base for skills training is more difficult. Of five studies that involved teaching self-protection skills, for example, none were able to confirm real-world generalization of the skills acquired during the intervention. Across most of the studies, the exact content taught to participants is not well described, nor are methods for presenting materials in a developmentally appropriate way discussed in detail (Schaafsma et al., 2015).
Improving Child and Family Health Literacy
An important approach to promoting the health and wellness of children with disabilities is helping them and their families obtain and understand health information related to the child’s condition. This can be accomplished by efforts to improve their health literacy. A number of definitions of “health literacy” have been proposed (HHS, 2000; Nutbeam et al., 2017; Parker, 2000; WHO, 1998). To help guide the present discussion, the committee adopted the comprehensive definition of the World Health Organization (WHO): Health literacy is “the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health” (WHO, 1998, p. 10). By developing and refining health literacy skills, patients and their families become more actively engaged in health care decision making with the clinician.
To help patients who have limited health literacy or limited capacity to obtain, process, and understand basic health information and access needed health-related services, new techniques for communicating personal health
8 See https://www.iwantthekit.org/resources/mtvs-its-your-sex-life (accessed December 12, 2017).
9 See https://www.plannedparenthood.org/online-tools/chat (accessed December 12, 2017).
information are being implemented across the health care sector. In general, providers and agencies need to make a concerted effort to present written and verbal information that is accessible, in plain language, and culturally appropriate. Tailoring health information to the specific target population whenever feasible is integral to helping individuals understand that which is most important—how the information applies to them and what actions to take (HHS, 2010).
Parents and caregivers of children with disabilities need to develop special communication skills for teaching developmentally appropriate health literacy to their children. It is important to note that communicating information to children with disabilities does not ensure that they will understand it or how to apply it toward decision making and health behaviors. It is therefore critical that health information presented to children be developmentally appropriate. Evidence suggests that young children regard health impairments as almost “magical” in origin, whereas preadolescents can understand that there are multiple causes of diseases/impairments and that the body may have variable responses to both pathogens and treatments (Perrin and Gerrity, 1981).
To ensure that they are teaching both medically correct and developmentally appropriate information to their children with disabilities, parents also require targeted interventions aimed at improving their own health literacy and teaching them practical skills for engaging in healthy lifestyle choices (DeWalt and Hink, 2009; Fleary et al., 2013). Parents who can communicate greater amounts of health literacy information when caring for their children with disabilities are more likely to see greater self-efficacy in their children during adulthood (Sivanand et al., 2017). Likewise, Abrams and colleagues (2009) note that “children with special health care needs and their families are candidates for enhanced health literacy-related strategies, especially those designed to promote self-management of chronic conditions” (p. S328). They assert that “child health providers must shift from the traditional paradigm of health care encounters as knowledge transfer from provider to patient/caregiver to one of building children’s and parents’ self-efficacy, motivating health-promoting behaviors, and evolving toward a paradigm of partnerships between patients/families and the health care team for decision-making, goal-setting, and self-management” (p. S329) through such techniques as “teach-back.”
The Agency for Healthcare Research and Quality identifies teach-back as a best practice in communicating health information and promoting health literacy (Brega et al., 2015). In simplest terms, the teach-back method involves asking patients to restate information in their own words, thereby encoding instructions into memory and ensuring that the patient comprehends critical aspects of his or her health. Where applicable, patients may also be asked to pantomime medication regimens or practice new
techniques related to medical equipment or assistive technology devices; for example, the communicator might request the patient to “show me how many pills you should take in one day” (Brega et al., 2015). If the patient’s restating of the information is incorrect or incomplete, the communicator restarts the process until he or she is satisfied that the patient comprehends the information (Schillinger et al., 2003). The teach-back method has been shown to improve glycemic control outcomes for diabetic patients with low levels of health literacy (Schillinger et al., 2003), as well as lead to improved outcomes for pulmonary rehabilitation (Ditewig et al., 2010).
Transitioning from Pediatric to Adult Health Care
All youth making the transition from pediatric to adult health care are responsible for constructing their own individualized care system; however, what constitutes an individualized system for young adults is significantly different from the provision of pediatric care. While pediatric health care is often paternalistic, reliant on parental involvement, and oriented to the medical home, services for young adults are organized around silos of subspecialists who may not coordinate care, and the fundamental premise of decision making is that the patient has autonomy in the decision-making process. For young adults with disabilities, the sheer volume of subspecialist appointments and services necessary to maintain health and functioning may greatly outnumber what is required by a healthy young adult without disabilities. Given the dwindling numbers of primary care physicians in recent years, the shortage of doctors who can coordinate care is not anticipated to abate in the near future (Stein et al., 2010).
Often, transition-age youth have established and familiar relationships with their pediatric primary care providers, who know their health and history in great detail. Under optimal circumstances, as these patients mature, their health care providers gradually begin the process of transferring developmentally appropriate aspects of care to them and work to increase their involvement in shared decision making. Unlike pediatric providers, adult health care providers routinely assume that their patients are aware of their full decision-making authority with respect to their care. When young adults with disabilities transitioning to adult health care services are unprepared, they may experience anxiety, fear, and avoidance of care (Stein, 2006).
In recent years, the National Alliance to Advance Adolescent Health has been providing the youth-friendly website www.gottransition.org to educate all transition-age youth, their families, physicians, and policy makers on how to ensure a smooth transition from pediatric to adult health care. For youth and families, topics include testimonials from young adults who have recently transitioned to adult health care, as well as links to helpful
medical technology, such as “medical ID” phone app downloads. Using an online chat layout, the Got Transition? website provides answers to frequently asked questions, such as “How can I keep track of my health care information?” and “What should I bring with me to my appointments?” These online resources can help transition-age youth with disabilities think about the responsibility of managing their own health and provide a safe forum for asking questions during the transition period.
In other circumstances, however, young adults with disabilities may not be fully competent to take control of their health care decisions. For those individuals not deemed competent to assign a medical power of attorney or create a health care proxy, the court may designate a guardian to make medical decisions for them. If the issue is not one of incompetence for decision making but of intellectual disability combined with personal immaturity, young adults may choose to waive Health Insurance Portability and Accountability Act (HIPAA) protections to include their parents in the medical decision-making process. For those young adults whose competence varies (e.g., those who have aperiodic psychotic episodes), clear communication between them and their doctors regarding procedures for times of temporary incompetence is critical to ensuring continuity of care within their legal rights to privacy (Stein, 2006).
Access to and quality of health care services and programs are supported by a number of federal programs. Two public health insurance programs, Medicaid and the Children’s Health Insurance Program (CHIP), help a significant number of U.S. children with disabilities access the necessary health care services discussed above. Other federal programs, including those housed within MCHB, the Centers for Disease Control and Prevention (CDC), and SAMHSA, also help increase access to and quality of health care services and programs for children with disabilities. These programs are discussed below.
Public Health Insurance Programs: Medicaid and the Children’s Health Insurance Program
For most Americans, access to health care is facilitated by private or public health insurance, or in some cases both. A significant portion of U.S. children receive health insurance through one of two public programs—Medicaid and CHIP—that provide access to medically necessary services for beneficiaries as defined in the state health plan of the state in which the child lives.
Established in 1965, Medicaid is today the dominant insurer of low-income adults and children, as well as those with disabilities, in the United States (CMS, 2017). Created in 1997, CHIP extends health insurance coverage to children who are not poor enough to qualify for Medicaid yet not wealthy enough to afford private insurance. As of April 2017, Medicaid and CHIP together insured approximately 35.7 million children from low-income families nationwide (CMS, 2017; KFF, 2017b). According to the most recent data available, from 2016, approximately 52.7 percent of children with special health care needs that are particularly complex (5.1 million of an estimated total 9.8 million children with special health care needs) were covered partially or fully by Medicaid and CHIP (for 43.9 percent, Medicaid or CHIP was the sole source of insurance, while an additional 8.8 percent received Medicaid coverage as a supplement to private insurance); approximately 42.1 percent were covered solely by private insurance.10
Most children are eligible for Medicaid or CHIP because they live in low-income households (“income eligibility”) and meet citizenship and state residency requirements. However, because Medicaid and CHIP are state programs with federal participation, states have wide latitude in determining income eligibility requirements, which vary widely from state to state. By law, all states must provide Medicaid to children aged 6–18 in households below 133 percent of the federal poverty level (FPL),11 with the option of raising eligibility to as high as 375 percent of the FPL. As a result, eligibility for Medicaid ranges from the minimum of 133 percent in 9 states to 324 percent in Washington, DC. Medicaid is currently considered an entitlement program—that is, once a person is eligible for services according to the state plan, that person must be enrolled if he or she applies. In contrast, waiting lists are permitted for CHIP. In other words, if a state exhausts federal or state maintenance-of-effort dollars in the annual CHIP program, it has no obligation to continue enrolling eligible children. States also vary greatly in upper limits of income eligibility for CHIP, ranging from 175 percent of the FPL in North Dakota to 405 percent of the FPL in New York (KFF, 2017a). Recent and ongoing discussions in the U.S. Congress with regard to Medicaid have centered on shifting from the current federal–state funding partnerships to fixed block grants, fully giving states control of how Medicaid dollars are spent. Such an approach would remove the entitlement status of Medicaid, likely leading to waiting lists and/or fewer benefits for children who rely on Medicaid to access health care services.
10 See http://childhealthdata.org/browse/survey/results?q=4828&r=1&g=620 (accessed April 8, 2018).
11 The 2015 FPL for a family of four living in the 48 contiguous states and the District of Columbia is $24,600.
In 33 states and the District of Columbia, a child who receives SSI (see Chapter 5) is automatically eligible for Medicaid. Other states use criteria that are more restrictive or otherwise differ from those of the SSI program to determine Medicaid eligibility for their SSI residents; thus, not all children receiving SSI receive coverage under Medicaid, although most do. Ten “209(b) states” use criteria more restrictive than those of the SSI program to determine Medicaid eligibility for their residents. In other words, for these states, meeting SSI eligibility criteria does not guarantee Medicaid eligibility. Additionally, seven “SSI criteria states” make their own determinations regarding Medicaid eligibility once an individual has met SSI eligibility criteria. The remaining 33 states and the District of Columbia are “1634 states” that accept the determination of SSI eligibility as adequate to support Medicaid eligibility (SSA, 2014). The net result of this variation is that the extent to which a child on SSI can secure Medicaid coverage to meet his or her needs is largely dependent on geography.
States have wide latitude regarding which services are covered and what payments they make to providers, although coverage of basic preventive and routine services (see Appendix D) is required under the Patient Protection and Affordable Care Act (ACA). Although coverage of prescription drugs and specialty services (e.g., speech-language, physical, and occupational therapies; assistive devices; personal care assistance) is optional, they are currently included in all states’ plans. Certain services are mandatory, however, including hospital care, physician services, and laboratory and X-ray services. Other programs and services are intended to evaluate children’s developmental progress and ensure individual and population health.
States also have administrative and budgetary control over their Medicaid and CHIP programs, which results in disparate levels of spending and covered services. The federal–state funding structure for Medicaid and CHIP enables states to access federal matching funds based on per capita income. For Medicaid, wealthier states such as New York and New Jersey receive a 50 percent expenditure match from the federal government, while states with lower per capita incomes receive a higher percentage expenditure match (e.g., Mississippi’s reimbursement for fiscal year [FY] 2018 is 75.65 percent).12 States must contribute the rest of the Medicaid share—thus about 25–50 percent of total program costs. Federal funding matches are similar for CHIP, but at an enhanced rate (approximately 15 percent higher). The ACA has further increased this enhanced rate by an average of 23 percent through September 30, 2019, as an incentive to enroll more children in the program (see Appendix D). An unintended policy
outcome of allowing states to set their own Medicaid budgets is that these federal matching dollars are not equally accessible to residents of all states. States set their provider reimbursement rates, operate their own enrollment systems, and operate their own medical billing systems to process and pay claims (GAO, 2017).
States with Medicaid programs that contract with managed care organizations (MCOs) are required to evaluate the quality and appropriateness of care for services provided to children with special health care needs. MCOs that are compensated through state-paid monthly premiums require evaluation via an external quality review organization. One component of external review is assessing progress on performance improvement projects (PIPs), where individual states choose areas to focus on improving. Several states have committed to PIPs focused on children with special health care needs. For instance, Utah has a PIP in place for improving coordination between mental health and medical providers, while Oregon has a PIP dedicated to coordinating health care and community-based services (KYDOH, 2016; NASHP, 2009).
Each state is required to list the quality measures it uses for evaluating its CHIP plan, and outcomes from the quality measures are reported annually to the U.S. Department of Health and Human Services (HHS) (NASHP, 2009). States are also required to report data on access to primary and specialty care services and care coordination activities. Quality measures for children with special health care needs are complex because states are not required to separate them out as a distinct population. That is, outcomes for children with special health care needs are blended with outcomes either for typically developing children or for adults eligible for Medicaid because of disability. One option is to extrapolate children who used long-term care services in the past year and to let this stand as a variable for children with special health care needs. Other suggested metrics include medical home criteria, parent satisfaction surveys, and disease-specific quality measures (Szilagyi, 2012, p. 134).
Medicaid Early and Periodic Screening, Diagnosis, and Treatment Program (EPSDT)
The EPSDT benefit guarantees comprehensive and preventive health care services for children under 21 who are enrolled in Medicaid. As described by the Centers for Medicare & Medicaid Services (CMS) (2017, pp. 5–13), “The EPSDT program consists of two, mutually supportive, operational components: assuring the availability and accessibility of required health care resources and helping Medicaid recipients and their parents or guardians effectively use them.” States are required to inform all Medicaid-eligible children and their families, including adoptive and
foster care parents of eligible children, about the EPSDT benefit and ensure that these children have access to screening services in accordance with an established periodicity schedule, to diagnosis and treatment services, and to support services (transportation and scheduling assistance). EPSDT screening services include comprehensive assessments of mental and physical health at developmental milestones, a routine schedule of physical exams, appropriate immunizations, necessary laboratory testing (including blood lead level assessments if needed), and preventive and wellness educational materials (CMS, 2017). Although these services are mandated, many children in actuality do not receive them. During a review of nine states’ EPSDT programs, HHS’s Office of Inspector General (OIG) found that 76 percent of children did not receive one or more required medical, vision, or hearing screenings; 59 percent did not receive all five required components of a medical screening; and 41 percent received no required screenings (HHS-OIG, 2010). The OIG recommended that “CMS require states to report vision and hearing screenings, collaborate with States and providers to develop effective strategies to encourage beneficiary participation in EPSDT screenings, collaborate with States and providers to develop education and incentives for providers to encourage complete medical screenings, and identify and disseminate promising State practices for increasing children’s participation in EPSDT screenings and providers’ delivery of complete medical screenings” (pp. ii–iii).
In a 2014 follow-up, the OIG reported that CMS had engaged in a number of promising outreach efforts to encourage participation in EPSDT screenings and mental health assessments, encourage completeness of medical screenings, and work collaboratively with states and providers. These efforts included the creation of a National EPSDT Improvement Workgroup and the creation and distribution of informational resources (i.e., a strategy guide for increasing adolescent well-care visits, an information bulletin aimed at increasing mental health screenings, a guide for states and health care providers on covered services, and a resource page with state-specific information on related topics). However, only 63 percent of eligible children received EPSDT screenings during FY 2013, with only two states meeting the secretary of HHS’s goal of 80 percent participation; between 2006 and 2013, only eight states reached 80 percent participation at least once (HHS-OIG, 2014). Recognizing that some of the steps that had been taken were promising, the OIG concluded that “given that CMS has not yet fully addressed all OIG recommendations, coupled with evidence that children continue to receive fewer medical screenings than required, CMS must continue to focus on EPSDT screenings,” leaving all of the previous recommendations open (HHS-OIG, 2014, p. 9). One pilot study examining the health outcomes of children receiving services from Medicaid’s EPSDT program found that 18 percent of child participants had been referred for
specialty care (Richardson et al., 1995); however, further study is needed to determine what percentage of children referred to specialty services actually receive that care.
As discussed throughout this chapter, access to a variety of quality health care services is critical for children with disabilities. For low-income families, public health insurance programs help children and their families access necessary care. However, some children with disabilities may not meet income requirements for Medicaid eligibility or may need services not traditionally covered by Medicaid. Medicaid waivers give states an opportunity to grant eligibility to persons at risk for institutionalization who would otherwise be ineligible for Medicaid and to offer additional services not covered in the state’s Medicaid plan. Such programs have been used to increase access to health care services for children with disabilities.
The increased flexibility provided by Medicaid waivers makes them attractive to states. As of February 2017, 41 such demonstration waivers were in place, requested by 33 states (Hinton et al., 2017). States have used their waiver authority in a variety of ways, including reforming how services are delivered; expanding Medicaid following passage of the ACA; managing long-term care; improving behavioral health care; and developing services for targeted populations, such as children with disabilities.
Home- and Community-Based Services (HCBS) Waivers Authorized under Section 1915(c) of the Social Security Act, the HCBS waiver program sets aside requirements that certain services be administered in institutions, allowing children and youth to live in their homes and/or communities.13 Children and young adults with intellectual or developmental disabilities make up 42 percent of the HCBS waiver service population (Eiken et al., 2015).
As the prevalence of autism spectrum disorder has increased in recent years, so has the use of HCBS waivers to increase children’s access to services for this disorder. As of 2009–2010, 33 states and the District of Columbia either included autism as a related clause or explicitly listed persons with autism under waivers for people with intellectual disabilities, while 11 states offered autism-specific waivers for children. Eligibility for children’s autism-specific waivers varied among states according to a
13 Children with special health care needs targeted by 1915(c) waivers include the following: those with physical disabilities, autism, brain/spinal cord injuries, developmental disabilities, intellectual disabilities, and serious emotional disturbances or mental illness; children who are “medically fragile and/or technology dependent”; and children and youth living with HIV/AIDs.
number of factors, including whether the waivers consider parents’ income, explicitly extend services to children with pervasive developmental disorder not otherwise specified and/or developmental disability, specify approved diagnostic screening tools, and impose age-related eligibility requirements.
HCBS waivers providing services for children with autism spectrum disorder have been found to differ substantially among states in a number of ways, including targeted populations, service cost estimates, cost control methods, and services covered (Velott et al., 2016). One analysis of services available through children’s autism waivers “reveals a focus on specialized needs of children with [autism spectrum disorder], including intensive, in-home behavioral therapy (e.g., Applied Behavior Analysis), speech therapy, occupational therapy, social skills training, and children’s respite care” (Hall-Lande et al., 2011, p. 6). HCBS waivers for children with autism have been linked to decreased likelihood of hospitalization or use of long-term care and decreased expenditures during hospitalization (Cidav et al., 2014), as well as higher reported family quality of life (Eskow et al., 2011). When HCBS waivers increase the limits on allowable costs for services and the number of enrollment slots, they have been found to reduce the likelihood that parents of children with autism spectrum disorder will be unable to engage in paid employment. Increased enrollment limits are most effective among higher-income households, whereas increased cost limits are most effective among low-income households (Leslie et al., 2017).
The ACA originally stipulated that state Medicaid programs would have until 2019 to meet federal standards for helping elderly patients and patients with disabilities access home- and community-based services. Recently, the deadline for meeting federal standards was extended to 2022. States are still required to submit a plan of action for complying with federal HCBS standards. All states have submitted at least proposed plans; however, only Tennessee has received CMS’s approval for its strategic plan.
Tax Equity and Fiscal Responsibility Act (TEFRA)/Katie Beckett Waivers A second waiver program was created to give states the option of extending Medicaid eligibility to certain children with long-term disabilities and/or complex medical needs who otherwise might not be eligible for Medicaid. The TEFRA waiver is specifically designed for children who meet the Social Security Administration’s definition of disability and have a medical need. Under TEFRA waivers (also known as Katie Beckett waivers), states are allowed to count only the income of children with special health care needs when making Medicaid eligibility decisions and provide services to children in their homes rather than in institutions. The waiver has been in place since 1982, and as of 2001 served nearly 25,000 children with disabilities in 20 states. Currently, 18 states and the District of Columbia participate in the TEFRA/Katie Beckett State Plan Option. States that receive TEFRA
waivers are obligated to serve all children who qualify; there cannot be a waiting list. TEFRA waivers extend only regular Medicaid state plan services to children; they cannot offer additional services, such as respite care or home/vehicle modifications (Semanksy and Koyanagi, 2004). Two states, New Hampshire and Arkansas, have similar programs that make use of state laws rather than the TEFRA option. These programs extend Medicaid eligibility to a broader group of children with disabilities than would a TEFRA program.
Maternal and Child Health Bureau Programs
MCHB has as its main goal enhancement of the health and well-being of women and children, especially those of low income, across the country. Much of the MCHB funding goes to the states in block grants, allowing them to apply the grants as most needed to address state problems and opportunities in maternal and child health. States have a number of performance expectations from their block grants and must report their performance yearly to receive the next year’s grant.
States vary a great deal in their use of these funds, but common themes include efforts to increase use of prenatal care, decrease maternal morbidity and mortality, improve birth outcomes, enhance prevention (through home visiting, screening, and some direct preventive activities), and increasingly implement community interventions to improve child well-being. Approximately two-thirds of the funds go to general preventive efforts, while the other one-third is earmarked for programs for children with special health care needs. Here, too, state programs vary from screening programs, to efforts to provide or improve care coordination, to programs for specific conditions such as asthma or obesity or developmental disabilities.
Through its state block grants, MCHB supports a large number of national programs, many focused on children with special health care needs. A large effort addresses helping states develop systems of care for children with special health care needs, including through work on regionalizing services, developing referral and access programs, strengthening care coordination, and actively engaging parents, as well as building the evidence and research base needed to carry out best maternal and child health activities. Substantial amounts of research related to basic questions about the epidemiology of special health care needs, new strategies and experiments focused on organizing care and increasing collaboration, and ways to enhance family caretaking abilities have come from MCHB support. MCHB also has provided significant support for family groups to have major and increasing roles in program development and oversight. Among other key programs, MCHB supports the Family to Family Health Information Network, with programs in each state to improve family engagement and
literacy. In addition to these general programs, which emphasize many of the commonalities among children with diverse chronic conditions and their families, MCHB supports specific initiatives in hemophilia, sickle cell disease, epilepsy, newborn genetic screening, and autism, mostly in response to specific congressional mandates.
MCHB has long served as a focus for the care of children with special health care needs, with six main goals or emphases: ensuring (1) the organization of community services for easy use by families, (2) access to a medical home, (3) adequate health insurance for children with special health care needs, (4) regular screening of children for special health care needs, (5) adolescents’ receipt of necessary transition services, and (6) the role of families as partners in decision making. MCHB has also worked to influence how other agencies, especially Medicaid/CHIP and the Social Security Administration, work to ensure that children with special health care needs have access to these programs. In recent years, that intergovernmental outreach has extended to the Departments of Education, Housing and Urban Development, and Justice.
Centers for Disease Control and Prevention (CDC)
The CDC’s Disability and Health Branch oversees 19 State Disability and Health Programs designed to improve health and functioning outcomes among people with intellectual or developmental disabilities or significant mobility limitations. The CDC (2017) defines disability as a “long-term limitation in mobility, cognition, vision, or hearing.” As one of the preeminent sources of health-related research in the country, the CDC aims to help states use evidence-based research to create and improve the effectiveness of existing health improvement programs. These programs promote the same healthy behaviors as those recommended for individuals without disabilities. To accomplish this goal, the CDC administers a grant program entitled Improving the Health of People with Mobility Limitations and Intellectual Disabilities through State-based Public Health Programs. At present, 19 states receive one of three types of grants for the purpose of building capacity, implementing new core programs, or adding enhanced activities to existing programs (CDC, 2017). Examples of how states use these grants to implement core programs or enhance activities are highlighted in Box 4-5.
The CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) also provides funding for surveillance, research, and prevention activities related to improving health outcomes (CDC, 2015). In FY 2016, NCBDDD awarded more than $135 million for research aimed at understanding the causes of developmental disabilities and delays and developing strategies for helping the one in six children who have a developmental disability or delay achieve positive health outcomes
(CDC, 2015). Accomplishments in 2016 included publishing treatment recommendations for children with ADHD and tracking autism and the trajectory from evaluation to diagnosis and treatment. Stated future goals include implementing high-volume trainings to educate pediatric behavioral therapy providers on evidence-based treatments for ADHD, as well as helping to improve access to behavioral therapy programs for children with all types of mental illness. NCBDDD’s 2017–2022 strategic plan also calls for increasing the use of best practices in treating and managing developmental disabilities and conducting follow-up research on the impact of services in improving outcomes for children with disabilities.
Substance Abuse and Mental Health Services Administration
As part of HHS, SAMHSA “leads public health efforts to advance the behavioral health of the nation . . . [and] reduce the impact of substance abuse and mental illness on America’s communities” (SAMHSA, n.d.-a).
Among its core missions is “improving access to behavioral health services for children, youth, and their families” (SAMHSA, 2017). One of SAMHSA’s primary concerns has been to increase access to mental and behavioral health care services by promoting health care and health systems integration. Children and youth with mental health conditions have a particular need for integrated care to address all of their chronic and immediate health care needs through the incorporation of primary care into mental health care, or vice versa. As discussed earlier in this chapter, integrated care is important to individuals with disabilities over the life span, as physical and mental health conditions often co-occur. The most common chronic physical health symptoms that co-occur with mental illness are high blood pressure, heart disease, diabetes, obesity, and asthma. Mental health conditions also often lead to substance abuse behaviors during adolescence and adulthood, including smoking, consuming alcohol, and using illicit drugs, all of which have negative effects on physical health. These interrelationships among mental illness, chronic health conditions, and substance abuse necessitate an integrated approach to treating the whole patient (SAMHSA, n.d.-b).
To promote the equal importance of meeting mental and behavioral health care needs and other health needs, SAMHSA administers the Primary and Behavioral Health Care Integration (PBHCI) grant program. This program helps community behavioral health organizations build capacity for providing integrated services. To date, the program has awarded more than $26 million to 100 community behavioral health organizations. HHS’s Office of Disability, Aging, and Long-Term Care Policy (DALTCP) conducted a comparative effectiveness evaluation of the implementation of integrated physical and behavioral health care delivery models for improving the mental and physical health of individuals with serious mental illness or substance abuse disorders. Using a quasi-experimental design, DALTCP compared pre- and postassessments of individuals’ physical and behavioral health status at three intervention sites (i.e., organizations receiving SAMHSA PBHCI grant funding) and three geographically and socioeconomically matched control sites, each site serving a minimum of 450 patients. Control sites offered no primary care services as part of their program and/or had no formal relationship with a primary care provider (DALTCP, 2013).
Data were collected and analyzed using SAMHSA’s national outcome measures (NOMs)—a standardized questionnaire that captures not only behavioral health information but also important indicators of functioning, such as stability in housing, employment, and education (DALTCP, 2013). Other questions probe the patient’s level of social engagement and interactions with the criminal justice system. A difference-in-difference analysis between intervention and control sites suggested that patients in
the integrated health care programs demonstrated greater improvements in diastolic blood pressure, total cholesterol, and plasma glucose compared with patients enrolled in nonintegrated programs (DALTCP, 2013). On the other hand, patients enrolled in nonintegrated programs were more likely than patients enrolled in the integrated programs to self-report that they had stopped smoking. The data did not suggest a clear relationship between integrated health services and improved behavioral health outcomes compared with the control programs, nor did functioning indicators, such as social engagement, differ significantly for patients between the two groups of sites. While patients receiving integrated health care showed decreased levels of substance abuse between pre- and postassessment, patients receiving nonintegrated health care showed lower rates of binge drinking relative to patients in the PBHCI programs (DALTCP, 2013). Mixed results regarding behavioral health and substance abuse outcomes were not unexpected given that both sites provided high-quality mental and behavioral health services to patients. Moreover, future studies could be expanded to include acute, isolated, quantifiable episodes, such as the number of panic attacks, in addition to chronic measures of physical health.
Cross-Disciplinary Partnerships for Research and Training
Finally, the committee thought it pertinent to highlight efforts at creating cross-disciplinary partnerships that engage in research and training on issues related specifically to childhood disability. Two such programs are discussed in this section: University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDDs) and Leadership Education in Neurodevelopmental and Related Disabilities (LEND).
University Centers for Excellence in Developmental Disabilities Education, Research, and Service
UCEDDs are a national network of 68 university centers that conduct interdisciplinary training on working with people who have developmental disabilities and autism spectrum disorder, host community service opportunities, and support research with the goal of positively impacting the lives of individuals with developmental disabilities, as well as their families, by increasing their independence, productivity, and integration into communities. These centers engage in a variety of initiatives to address the needs of those they serve, providing interdisciplinary training, technical support and assistance, and information to individuals with developmental disabilities and their families. Additionally, they promote awareness of intellectual and developmental disability in the community, offering outreach presentations
on autism and developmental disabilities to various audiences, including the general public.
UCEDDs engage in a variety of research collaborations. An example is the Sustainable Implementation of Family-Centered Transition Planning for Young Adults with Autism Spectrum Disorders study with the University of New Hampshire and University of Maine, the goal of which is to develop a sustainable process for implementing a Family-Centered Transition Planning model for youth and young adults with these disorders. Most UCEDDs also run active multidisciplinary clinical programs for children with disabilities, as well as provide direct education and clinical services. Through its Multidisciplinary Diagnostic Team and Comprehensive Referral for Autistic Spectrum Disorders project, for example, the Alaska UCEDD screens, diagnoses, and refers children with autism spectrum disorder and other developmental disabilities. About a dozen states offer cultural diversity training as a “direct service,” while a handful provide or connect individuals with organizations that can supply assistive devices. Indirect services include the development of technology-friendly toolkits to help people with autism spectrum disorder better integrate into society. For example, the Tarjan Center at the University of California, Los Angeles, recently released the PEERS Virtual Coach mobile application, which coaches individuals with autism on learning important skills and strategies via role-play videos and tools for making and keeping friends, all using a mobile device.
General funding for UCEDDs is administered by the Administration on Intellectual and Developmental Disabilities (AIDD),14 which is responsible for implementing the Developmental Disabilities Act of 2000 and the disability provisions of the Help Americans Vote Act. More than 30 UCEDDs receive LEND grants to train students, self-advocates, and community health workers on interdisciplinary service integration models (see the discussion of LEND below). UCEDDs leverage their core funding to partner with other federal, state, and local resources.
Leadership Education in Neurodevelopmental and Related Disabilities
The LEND program provides graduate-level interdisciplinary training to persons from diverse professional backgrounds on how to improve systems of care that promote the prevention of disabilities and ensure access to family-centered, community-based services and supports for children with neurodevelopmental disabilities and their families. LEND grants are funded under the 2006 Combating Autism Act and administered by MCHB. LEND programs operate within universities, typically as part of a
14 AIDD is housed in HHS’s Administration for Children and Families.
UCEDD. There are currently 5215 LEND programs across 44 states, with the 6 other states having various remote partnerships with programs in another state.16 Collectively, LEND programs form a national network that shares information and resources and maximizes their impact. These centers work together to address national issues of importance to children with special health care needs and their families, and to exchange best practices and develop shared products.
Participants in LEND include graduate and postgraduate students, family members, self-advocates, and community professionals who already demonstrate a commitment to promoting quality systems of care for children with disabilities and their families (UWI, 2017). Academic trainees are recruited from the population of advanced-standing, matriculated graduate or professional students/trainees through their home departments and/or through announcements posted by the UCEDD program. Community trainees are practicing health care professionals who work with mentors to create individualized training programs relevant to their current profession. LEND programs also solicit the participation of self-advocates who are adult individuals with either an intellectual or physical disability. Completion of a college degree is not mandatory for self-advocates to enroll (UNC, 2012).
Each academic year, a new class of LEND enrollees begins a rigorous, interdisciplinary study of the special health care needs of children with developmental disabilities.17 Participants are required to commit for two semesters, with the option to continue second-year specialized training either with a mentor or through an externship, if such opportunities are available (UWI, 2017). Each semester, trainees enroll in one required course and work with a leadership mentor to complete 8–12 hours/week of LEND-related experiences, such as participation in clinics, policy development, and advocacy (UNC, 2012). LEND participants also take part in a cross-disciplinary leadership practicum with other maternal and child health fellows that includes a variety of retreats and workshops designed to foster interdisciplinary communication and create networks.
As noted, funding for LEND projects is allocated through the Combating Autism Act of 2006. That act was first reauthorized in 2011 and then again in 2014 as the Autism CARES Act, currently in effect through 2019. In FY
15 Only 43 were funded by MCHB through 2016; the remaining centers opened on July 1, 2017.
16 The number of programs was greatly expanded by the Combating Autism Act of 2006.
17 At the University of Wisconsin’s LEND program, the interdisciplinary curriculum includes training in the following disciplines: audiology, family, genetics/genetic counseling, health administration, human development and family studies, medicine/pediatrics, nursing, nutrition, occupational therapy, physical therapy, psychology, public health, person with developmental disability, social work, special education, and speech/language pathology (UWI, 2017).
2016, federal funding allocations for LEND programs totaled $29 million, with $1 million earmarked for new programs (HRSA, 2016). Various institutions and departments within universities also contribute funding for students on a voluntary basis.
Since 2006, the number of LEND centers has greatly increased, as have the appropriations for each center. Annual reports to Congress during FY 2010–2012 suggest that children are being diagnosed earlier (by age 3) as a result of LEND, and LEND programs are reducing wait times for evaluations, interventions, and admission into services, as well as developing new interventions to advance the field. However, it is also important to note that with the shift to autism-specific legislation as the primary federal funding mechanism for LEND programs, the focus of these programs has shifted from the broader group of children with disabilities to a primary emphasis on children with autism. In FY 2013, 77 percent of LEND program graduates (5 years following completion of the program) were engaged in work related to maternal and child health populations, while 81 percent demonstrated some sort of field leadership in academic, clinical, public health practice, and/or public policy and advocacy activities (HRSA, 2016). Also in FY 2013, LEND training programs collaborated with state Title V (maternal and child health) agencies on more than 6,300 activities in the areas of service, training, continuing education, technical assistance, product development, and research (HRSA, 2016).
Children with disabilities require an array of health care services and supports individualized to meet their specific needs. However, as highlighted throughout this chapter, there is great variability in how, where, and from whom children receive needed services. Consequently, the word system is a misnomer when one is discussing health care services for children with disabilities. As Shi and Singh (2014, p. 3) explain, “U.S. health care delivery does not function as a rational and integrated network of components designed to work together coherently.” The delivery of services is largely in private hands, while major government programs finance and insure health care for large segments of the U.S. population. There is no central oversight of health care delivery and no administrative control by the federal government, contributing to little standardization and wide variability in service availability, accessibility, and quality. As a result, children with disabilities and their families often have difficulty navigating and accessing needed services and supports.
In recent decades, however, pediatric and adolescent health care providers have increasingly been moving toward a more coordinated and integrated approach to delivering health care services to children, especially
those with complex health care needs and disabilities. The most prominent example of this is the implementation of a PCMH, which serves as a centralized source for coordinating multidisciplinary, team-based care to provide comprehensive services. A variety of health professionals (e.g., a physician, nurse, social worker, case manager, patient navigator) in a myriad of practice settings (e.g., primary care clinic, specialty care clinic, children’s hospital, community-based practice, home care organization) can be a PCMH responsible provider. More important than the type of professional or the practice setting is simply having a professional who will take charge, which can be a daunting task given the breadth and variety of health issues experienced by children with severe disabilities.
Based on its review of health care programs and services for children with disabilities, the committee drew the following conclusions:
- 4-1. Home- and community-based services are vital to optimizing the health, functioning, and well-being of children with disabilities while enabling them to live in their homes and increasing opportunities for active participation in their communities.
- 4-2. A wide variety of health care programs and services exist for children with disabilities and their families. When accessible and of sufficient quality, these programs and services provide vital support to children with disabilities and their families and increase the prospects for progress toward optimal near- and long-term outcomes.
- 4-3. The high prevalence of disability due to mental health impairments among children, frequent co-occurrence of physical and mental health conditions, and limitations of available mental health services calls for substantial work to increase the availability and accessibility of mental health care services and the integration of mental health care with the rest of health care services.
4-4. Access to health insurance that adequately covers necessary services is critical to closing gaps in access to health care and related services. Public health insurance programs—Medicaid and the Children’s Health Insurance Program (CHIP)—are important to ensuring continuous access to health care for children with disabilities from low-income families. Medicaid waivers provide an important avenue for states to increase program flexibility, and have been used in a variety of ways, including
- reforming the way in which services are delivered;
- managing long-term care;
- improving mental health care;
- developing services for targeted populations, including children with disabilities;
- expanding eligibility to individuals who do not meet income requirements; and
- ensuring access to services not ordinarily covered by Medicaid.
- 4-5. Given that access to care is a problem across the country, service delivery models that capitalize on modern advances in technology and telecommunications, such as telehealth, present exciting opportunities for increasing the accessibility of specialized health care services, sharing health information, monitoring medical and health data, and increasing the role of children and their families in self-care.
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