Opportunities for Improving Programs and Services for Children with Disabilities (2018) / Chapter Skim
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4 Health Care Programs and Services
4 Health Care Programs and Services
Pages 91-156
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From page 91... ...
. 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.
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From page 92... ...
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.
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From page 93... ...
, durable medical equipment, case management, personal care, caregiver and client training, and health promotion and disease prevention (Perrin et al., 2007)
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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)
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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.
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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.
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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)
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From page 98... ...
. Beyond coordinated care, collocated care models require that at least one behavioral health specialist be housed within the primary care provider's office, which naturally allows for more cooperation and collaborative care relative to re ferring the child to an unaffiliated practice.
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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)
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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)
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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.
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Health information for children and families should be available in the range of cultural and linguistic diversity in the community and take into account health literacy. In hos pitals, conducting physician rounds in the patients' rooms with nursing respect, acceptance, support, trust, openness, and understanding of cultural variations and diversity (Dunst and Trivette, 1990)
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From page 103... ...
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.
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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)
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From page 105... ...
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.
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From page 106... ...
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.
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. 4 Rural Health Information Hub, see https://www.ruralhealthinfo.org (accessed December 12, 2017)
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From page 108... ...
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.
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From page 109... ...
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)
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From page 110... ...
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)
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From page 111... ...
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.
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From page 112... ...
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)
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From page 113... ...
. 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.
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. 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.
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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.
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. Assessment and therapy services may be delivered by a variety of professionals, such as psychologists; clinical social workers; psychiatric
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. 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
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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.
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From page 119... ...
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.
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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)
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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.
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Since 1997, Healthy Athletes has provided more than 1.9 million free health screen ings in podiatry, audiology, dentistry, vision, physical therapy, general health checkups, and health and well-being, as well as education on healthy lifestyle choices and referrals for follow-up care for athletes. It has also trained more than 155,000 health care professionals and students to work with and treat people with intellectual disabilities (Special Olympics, n.d.-a)
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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)
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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.
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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.
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Two public health insurance programs, Medicaid and the Children's Health Insurance Program (CHIP) , help a significant number of U.S.
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. 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)
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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.
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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.
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. 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)
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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.
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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.
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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.
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access to a medical home, (3) adequate health insurance for children with special health care needs, (4)
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Substance Abuse and Mental Health Services Administration As part of HHS, SAMHSA "leads public health efforts to advance the behavioral health of the nation .
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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)
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. 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.
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From page 138... ...
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.
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From page 139... ...
. 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)
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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)
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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 oppor tunities for active participation in their communities.
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http://www.apta.org/AboutPTs (accessed December 12, 2017)
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2017. The pediatric patient centered medical home: Innovative models for improving behavioral health.
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http://medicine.yale.edu/psychiatry/step/ news/article.aspx? id=1750 (accessed December 12, 2017)
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2011. Hospital-based comprehensive care programs for children with special health care needs: A systematic review.
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https:// health.gov/healthliteracyonline (accessed December 12, 2017)
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2010. Systematic review of the health benefits of physical ac tivity and fitness in school-aged children and youth.
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2011. Evidence for family-centered care for children with special health care needs: A systematic review.
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2009. Improvement in the family-centered medical home enhances outcomes for children and youth with special healthcare needs.
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https://nashp.org/care-coordination-and-linkages-to-services (accessed December 12, 2017)
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https://www.samhsa.gov/specific-popu lations/age-gender-based (accessed December 12, 2017)
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The Journal of Behavioral Health Services and Research 31(3)
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http://step.yale.edu (accessed December 12, 2017)
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2016. Medical homes for children with special health care needs: Primary care or subspecialty service.
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http://youth.gov/youth-topics/transition-age-youth (accessed December 12, 2017)
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