CHAPTER 25

Developmental disabilities and many behavioral disorders are lifelong chronic conditions with no medical cures. Even acute behavioral disorders that seem to resolve are often rooted in a child’s neurobiology, from which other behavior problems may arise over a lifetime (see Chapter 11, Making Developmental-Behavioral Diagnoses). While modern medicine provides pharmacological treatments to decrease symptoms of these conditions, patients and their families continue to present to their primary pediatric health care professionals with problems that are not amenable to medication alone. While not always easy to find, there are both governmental and nonprofit programs available to support children with chronic developmental-behavioral disorders and their families. The American Academy of Pediatrics (AAP) emphasizes that primary pediatric health care professionals should provide a medical home for these patients— linking them and their families to appropriate services and resources, including community-based resources—in a coordinated effort to achieve optimal outcomes.¹ Research has indicated that families of children with developmental-behavioral disorders want their primary pediatric health care professionals to help coordinate their children’s care in the manner advised by the AAP, including putting them in touch with parents of children with similar disorders.² For these reasons, primary pediatric health care professionals need to be familiar with social and community services available to children with developmental disabilities and behavioral disorders and their families.

Care Coordination and Case Management

From the time of the initial diagnosis of a developmental disability or behavioral disorder, primary pediatric health care professionals make multiple recommendations for their patients that involve accessing services provided by a third party not under the clinician’s or parent’s control. For example, primary care clinicians often write orders or make recommendations for therapies (eg, speech, occupational, physical, or behavioral therapies), school services (eg, remedial special educational instruction or accommodations and modifications), and evaluations in other clinics (eg, audiology, ophthalmology, or medical genetics); some of these may require the patient’s parent to be reliant on a third party with regard to scheduling and payment. The need for additional third parties to address new situations continues for life, given the chronic nature of many developmental-behavioral disorders. This can cause patients, their caregivers, and their health care professionals ongoing stress due to lack of control. Both primary care clinicians and parents of individuals with developmental-behavioral disorders report confusion over the exact services needed from each of the third parties, frustration over wait times for appointments, and inconsistency regarding insurance or Medicaid coverage for the services.3,4

Primary pediatric health care professionals’ designation of a care coordinator and provision of care coordination services within their practices help clinicians navigate the health care system and access needed services for all of their patients, including those with developmental-behavioral disorders. Building such care coordination services within a pediatric practice is one of the emphasized cornerstones of the AAP family-centered medical home model, so much so that the AAP provides the tools for such coordination through a Web site (https://medicalhomeinfo.aap.org; click on the “Tools and Resources” link on the home page). This Web site also has information regarding Title V Maternal and Child Health Bureau’s children with special health care needs programs and other resources and services available in individual states under “National and State Initiatives” located at the top of the home page.

Various agencies, insurance plans, and most state Medicaid programs offer case managers who can serve as care coordinators for eligible patients. This care coordination is limited to patients meeting inclusion criteria for having a case manager. In the cases of patients eligible for such a service through a managed care organization, the role of the case manager may be limited to seeking only the services aimed at disease management, with no coordination for educational, social support, or secondary behavioral health needs. In light of these possible limitations with use of outside sources, care coordination within the primary care pediatric practice is preferred, since these services would be available to all patients, addressing all condition-related needs and not simply those considered a medical treatment.⁵ At times, however, the use of an outside case manager might be needed. The Henry J. Kaiser Family Foundation Web site provides helpful information about each state’s Medicaid case management services (kff.org/medicaid/state-indicator/targeted-case-management).

Effective care coordination links families to individuals who can (1) help caregivers understand the health care needs of their child and maintain their child’s health history; (2) provide information regarding their child’s medical condition; (3) identify the medical, social, educational, and mental health services their child may need; (4) assist in applying for services for which the child is eligible; (5) develop a written comprehensive plan of care; (6) arrange for services to be provided and monitor the provision of services; (7) follow up on referrals; (8) arrange for transportation; and (9) coordinate among service providers.6 The staff member chosen to be the care coordinator can vary, although there are some indications that the most effective choice with regard to cost and family satisfaction would be a nurse.⁷

Addressing specific nonmedical needs of individuals with developmental-behavioral disorders and their families has various benefits. One study showed that care coordination in the context of a patient-centered medical home helped alleviate the economic burden on families of children with attention-deficit/hyperactivity disorder (ADHD).⁸ Another study showed that having an individual provide case management and counseling for grandparents raising grandchildren with developmental disabilities increased the grandparents’ sense of empowerment and caregiving mastery while decreasing their depressive symptoms.⁹ Case managers also seem to be the key to successful vocational programs for children with developmental disabilities transitioning to adulthood, and they offer hope for reducing the maltreatment of children with disabilities, estimated to be around 3 to 4 times higher than the maltreatment of children without disabilities.^10,11 Care coordination seems to improve continuity of care, decreases delayed or missed services, and improves caregiver satisfaction with medical care.^12,13 Such coordination also seems to reduce fragmented or duplicative care, length and cost of hospital stays, and caregiver stress.¹⁴ Unfortunately, despite the evidence base for care coordination, many families continue to report difficulty accessing these services. In a study involving parents of children with autism spectrum disorder, only 14% of parents who needed care coordination felt that they received the services they needed. The more highly resourced parents in this study (ie, white, English-speaking parents with higher educational levels and private insurance coverage) reported the greatest gaps between their perceived need and receipt of adequate care coordination support.¹⁵ In general, parents of children with autism report significantly more difficulty accessing services than parents of children with other developmental disabilities or behavioral disorders,indicating the critical importance of implementing care coordination systems for these families.¹⁶

Children’s Mental Health Services

The 2009–2010 National Survey of Children with Special Health Care Needs showed that of the approximately 12,042 children in the survey with a chronic emotional, behavioral, or developmental problem, 27.6% of those children required counseling or other mental health services.¹⁷ However, 5.6% of children with special health care needs were not able to receive these services. Mental health services were the most common unmet need reported, particularly for low-income and uninsured children.¹⁷ These data are consistent with findings over the past 30 years.¹⁸ Among children receiving special education services, emotional and behavioral problems are now the most frequently reported reason for limitations in the children’s daily activities.¹⁹ Even among young children (from birth to 3 years of age) with developmental disabilities, a significant number have behavior problems consistent with a psychiatric disorder, including tantrums, aggression, oppositional behaviors, hyperactivity, and self-injury.²⁰ Intervention from behavioral health providers, including behavior therapists and/or psychiatrists, is essential in helping to ameliorate the impact of these behaviors on the child and family. Caring for a child with mental health care needs affects the financial well-being and family caregiving burden more than caring for a child with other special health care needs.21

Undoubtedly, primary pediatric health care professionals and their office staff who are aware of and can access children’s mental health services, while counseling families to alleviate some of the stigma of referral to a mental health provider, can offer hope to the numbers of families projected to have such needs in their practices. Primary pediatric health care professionals can obtain information about state and local mental health services through the National Alliance on Mental Illness (www.nami.org) and Mental Health America (www.mentalhealthamerica.net). Another Web site, www.psychologytoday.com, provides links to psychiatrists, psychotherapists, and other behavioral health providers by city, state, or zip code.

Supplemental Medical Insurance and Other Financial Assistance Programs

The cost of raising a child with a developmental-behavioral disorder can be staggering for families. A recent study found that the lifetime cost of raising a child with autism, for example, was $1.4 million, and the cost of raising a child with both autism and an intellectual disability was $2.4 million. The most significant financial factors involved the expenses associated with lost parental productivity as well as the cost of special education services.²² The Medical Expenditure Panel Surveys of 1999 and 2000 targeting families of youth with disabilities younger than 18 years revealed that these families paid approximately 11% of health care bills out of pocket, with the financial burden worse on families having the most severely affected children, the lowest incomes, and/or the least health insurance.²³ The 2009–2010 National Survey of Children with Special Health Care Needs reported that 21.6% of families of the youth with chronic physical, developmental, behavioral, or emotional conditions on the survey list reported that their child’s health care caused financial problems, and 25% of these surveyed families had to cut back or quit work because of their child’s condition. In addition, 23.6% of the surveyed families reported their children experienced unmet health care needs.¹⁷ Despite the availability of Medicaid and the State Children’s Health Insurance Program (SCHIP) to low-income parents with uninsured children with developmental-behavioral disorders, many parents who qualify for these programs report not using them due to the belief that they are not eligible for the programs or because they feel that the application process is too difficult.²⁴ Expansion of insurance coverage options available through the health care marketplace as part of the Patient Protection and Affordable Care Act (ACA) has reduced the number of uninsured individuals; however, children, including those with special health care needs, were not a priority in the development of the ACA, as adults comprised the majority of the uninsured population.²⁵ Given these factors, it is critical for primary pediatric health care professionals or their office staff to know how to guide families in accessing and applying for supplemental medical insurance and other financial assistance programs that may be available to children with developmental-behavioral disorders and their families.

A key financial assistance program for children with disabilities is Supplemental Security Income (SSI), which provides a monthly financial benefit to families of children with disabilities who meet financial eligibility criteria. Primary pediatric health care professionals can assist families by providing a clear, concise summary of medical records that document the child’s disability to the Social Security Administration. In addition, health care professionals who work with children with disabilities should become familiar with the Medicaid waiver programs in their state, as these provide funding and supplemental services to individuals with disabilities with the goal of helping families with their caregiving needs. Some states have long waiting lists for these Medicaid waiver services, so primary pediatric health care professionals should refer families to these programs as early as possible. Helpful Web sites for clinicians to learn more about financial assistance programs for children and families are included in Table 25.1.

Educational and Advocacy Services

Because primary pediatric health care professionals are often the first individuals to express a concern regarding a child’s development or behavior or the first with whom parents share a concern, they are in a unique position to be able to access appropriate early childhood and special education services for their patients. Children with developmental-behavioral disorders may need special education and related services to be successful in school. Strock-Lynskey and Keller²⁶ detail the history of special education laws beginning with Section 504 of the Rehabilitation Act of 1973. This Act was the impetus for subsequent laws that provide civil rights protections to individuals with special needs, require rehabilitation services in schools, and prohibit discrimination by institutions receiving federal funds. The first law governing the provision of special education services was passed in 1975 with the Education of All Handicapped Children Act (EHA, PL 94–142), which established the right to a free and appropriate education for all children with disabilities from 5 to 21 years of age in the least restrictive environment, regardless of the functioning level of the child’s abilities. In 1986, an amendment to the EHA extended the provision of special educational services to include early childhood intervention for children from birth to 3 years of age and special education to children from 3 to 5 years of age. In 1990, PL 94–142 was reauthorized and renamed the Individuals with Disabilities Education Act (IDEA, PL 101–476). IDEA has been amended twice, in 1997 and 2004, with one of the 2004 provisions emphasizing a family-centered approach by “strengthening the role and responsibility of parents and ensuring that families of such children have meaningful opportunities to participate in the education of their children at school and at home.”27 These laws have also been expanded over the years to include more children with special health care needs living in their local communities, including children in residential settings, in hospitals, or those who are homebound. Partnerships, family choice, and the provision of information needed for parents to become advocates are supported by these laws. In addition, advocates for children with developmental-behavioral disorders can also depend on the Americans with Disabilities Act of 1990, which “prohibits the denial of education services, programs or activities to students with disabilities and prohibits discrimination against all such students,” and Section 504 of the Rehabilitation Act (details at https://www2.ed.gov/about/offices/list/ocr/504faq.html).²⁸ The 2015 Every Student Succeeds Act (ESSA), which replaced the 2002 No Child Left Behind (NCLB) law, continued the NCLB requirement that public schools be held accountable for the educational achievement of students with disabilities.

Infants and young children under 3 years of age with a suspected developmental delay or behavior disorder, as well as children with a medically diagnosed physical or mental condition having a high probability of resulting in delays, are eligible for early childhood intervention referral under Part C of IDEA (see Chapter 6, Early Intervention). Children from 3 to 21 years of age may qualify for special education services through their local public school district under one or more of the following eligibility categories: autism, intellectual disability, specific learning disability, orthopedic impairment, other health impairment (OHI), auditory impairment, deafness, visual impairment, deaf-blindness, emotional disturbance, speech impairment, traumatic brain injury, and multiple disabilities (see Chapter 20, Interpreting Psychoeducational Testing Reports, Individualized Family Service Plans [IFSP], and Individualized Education Program Plans [IEP]).

Primary pediatric health care professionals can assist families whose children have a developmental-behavioral disorder with a timely referral for early childhood intervention, and they can support a parent’s request for a school district special education and related services (such as occupational therapy, physical therapy, and speech/language therapy) evaluation. Physicians are the only individuals who can identify children whose health conditions affect their strength, vitality, or alertness and allow them to access special education services and modifications through the OHI eligibility category, which requires a licensed physician’s documentation. OHI eligibility includes ADHD, developmental coordination disorders, and other medical conditions that negatively impact the child’s education. While not within the realm of special education, Section 504 of the Rehabilitation Act also allows for special accommodations, such as preferential seating and extra testing time, which the clinician can advise parents to seek as needed for their children.

Many families of children with developmental-behavioral disorders have become increasingly knowledgeable about the laws governing their child’s educational rights and have developed advocacy skills to ensure provision of services. Educational advocacy has become a recognized need and service of many disability groups. Across the country, there are seminars, trainings, and conferences for parents and professionals devoted to ensuring the educational rights of children with disabilities. Nonetheless, there are many children who are not yet receiving the services they need in order to maximize their potential. The 2009–2010 National Survey of Children with Special Health Care Needs found that nearly half of school-aged children with developmental problems had difficulty accessing services, and 16.9% did not have an Individualized Education Program (IEP).30

The AAP clinical report on the IDEA for children with special educational needs emphasizes the importance of developing a thorough understanding of the early intervention and special education processes and the critical role of pediatric health care professionals in supporting the child’s receipt of appropriate services.³¹ A primary pediatric health care professional does a great service for the child and parents by listening to parents’ concerns in a time-limited clinic visit and guiding them to the appropriate early intervention or school district evaluations, even when the clinician does not observe the stated behavior or delay. While primary pediatric health care professionals do not have a direct role in remediation, they are able to initiate interventions aimed at helping the child meet his or her full potential. They can monitor the child’s progress, help parents identify their child’s strengths, and advocate for needed educational and therapeutic programs from year to year. They can also help families understand their child’s developmental levels and abilities and accept realistic goals for their child. Community agencies, such as local chapters of The Arc (www.thearc.org), provide training for parents on special education and advocacy skills and may also provide educational advocates to accompany parents to their children’s IEP meetings at school to assist them in accessing the most appropriate special educational and therapeutic services for their children. State contact information and other resources related to IDEA may be found at https://www2.ed.gov/about/contacts/state/index.html and http://idea.ed.gov.

Functional Behavioral Analysis/Behavior Management Counseling Services

Both mothers and fathers of children with disabilities exhibit high rates of depressive symptoms associated with child behavior problems, parental stress, coping style, and support.^32,33

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