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Issues for (Medically Complex) Children Tamara Simon, MD, MSPH Understand some of the issues involved in the medical care of medically complex children,

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Presentation on theme: "Issues for (Medically Complex) Children Tamara Simon, MD, MSPH Understand some of the issues involved in the medical care of medically complex children,"— Presentation transcript:

1 Issues for (Medically Complex) Children Tamara Simon, MD, MSPH Understand some of the issues involved in the medical care of medically complex children, such as health insurance, medical home, etc. –Health Insurance –Medical Home Model –Care Coordination –Family-Centered Care –Early Intervention –Permanency planning –Transition to adult care

2 A substantial minority of CSCHN experienced unmet health needs (17.7%) The impact on families was pronounced: –20.9% reported their child's health care caused financial problems –29.9% reported cutting back or quitting work because of their child's condition –These adverse child- and family-level impacts were concentrated among low-income and uninsured children with CSHCNs Van Dyck PC, Kogan Md, McPherson MG, et al. Prevalence and characteristics of children with special health care needs. Arch Pediatr Adolesc Med Sep;158(9):

3 Health Insurance American Academy of Pediatrics (AAP) policy statement on recommended health benefits for children through age 21 For all children: –Health supervision and preventive care –Subspecialty services –Family planning –Care of newborn infants –Vision –Audiology –Laboratory and pathology services –Radiology services AAP Committee on Child Health Financing, Pediatrics 117(3), March 2006, pp

4 Specialized Services for CSHCN Care coordination in the pediatric medical home and comprehensive case management from other community agencies and insurers Intermediate or skilled nursing facility care in residential and rehabilitation settings Physical, occupational, speech (including speech generation), and respiratory therapy for rehabilitation and habilitation provided in medical centers, private/public-sector offices, schools, residential settings, and the home Home health care services including but not limited to physician supervision of care, therapies, private-duty nursing, and home health aides Nutritional evaluation and counseling services by pediatricians, dietitians, nutritionists, and other therapists for eating disorders (including primary obesity, anorexia, and bulimia) and specific nutritional deficiencies

5 Specialized Services for CSHCN Special diets, special infant formulas, nutritional supplements, and delivery (feeding) devices for nutritional support and disease-specific metabolic needs Rental or purchase, maintenance, and service of durable medical equipment Disposable medical equipment Respite services for caregivers of children with special health care needs Palliative and hospice care for children with terminal illnesses

6 Medical Home Model AAP defines an ideal model of care for children Health care is delivered or directed by well-trained physicians who provide primary preventive, acute, and chronic condition care. It is: –1) accessible –2) continuous –3) comprehensive –4) family-centered –5) compassionate –6) culturally effective, and –7) coordinated with specialized services provided outside the primary care setting AAP Medical Home Initiatives for Children With Special Needs Project Advisory Committee. The medical home. Pediatrics.2002; 110 :184 –186.

7 Medical Home Model (cont) Can this be achieved? Approximately half of CSHCN receive care that meets criteria Most CSHCN have a doctors, but care coordination and family-centered care are lacking Parents with a medical home report significantly less delayed or forgone care, fewer unmet health needs the comprehensive care model described by the AAP policy statement on the medical home is not yet in place for a significant number of CSHCN and their families Strickland B, McPherson M, Weissman G, et al. Access to the Medical Home: Results of the National Survey of Children with Special Health Care Needs. Pediatrics. 113(5), May 2004, pp

8 Care Coordination Process that facilitates the linkage of children and their families with appropriate services and resources in a coordinated effort to achieve good health Care coordination for CSHCN often is complicated because: –there is no single point of entry into the multiple systems of care –complex criteria frequently determine the availability of funding and services among public and private payers –economic barriers to coordination of care exist and affect families and health care professionals –sociocultural barriers to coordination of care exist and affect families and health care professionals Primary care physicians have a vital role in the process of care coordination, in concert with the family AAP Council on Children with Disabilities. Care coordination in the medical home. Pediatrics.2005; 116 :1238 –1244.

9 Family-Centered Care Grounded in collaboration among patients, families, physicians, nurses, and other professionals For the planning, delivery, and evaluation of health care (and education) Guided by the following principles: –Respecting each child and his or her family –Honoring racial, ethnic, cultural, and socioeconomic diversity and its effect on the familys experience and perception of care –Recognizing and building on the strengths of each child and family –Supporting and facilitating choice for the child and family about approaches to care and support –Ensuring flexibility in organizational and provider practices so services can be tailored to the needs, beliefs, and cultural values of each child and family

10 Family-Centered Care (cont) –Sharing honest and unbiased information with families on an ongoing basis and in ways they find useful and affirming –Providing and/or ensuring formal and informal support for the child and parent(s) during pregnancy, childbirth, infancy, childhood, adolescence, and young adulthood –Collaborating with families at all levels of health care, in the care of the individual child and in professional education, policy making, and program development –Empowering each child and family to discover their own strengths, build confidence, and make choices and decisions about their health AAP Committee on Hospital Care. Family-Centered Care and the Pediatricians Role. Pediatrics. 112(3) September 2003, pp

11 Early Intervention Various federal and state statutes now mandate that community-based, coordinated, multidisciplinary, family- centered programs be established, which are accessible to serve children and families in need Pediatrician, with the family, plays a critical role in guiding the clinical and developmental aspects of the early intervention services provided This role can be best served in the context of providing a medical home for CSHCN AAP Committee on Children with Disabilities. Role of the Pediatrician in Family-Centered Early Intervention Services. Pediatrics. 107(5), May 2001, pp

12 Early Intervention 1975: Public Law (PL) , The Education of the Handicapped Act- established the right of children aged 5 to 18 to a free, appropriate public education and related services 1986: PL supported the development of early intervention programs for infants and children with disabilities or developmental delays, from birth to 3 years. Free and appropriate public education provided by the states for 3- to 5-year-olds. 1990: PL , Individuals With Disabilities Education Act (IDEA) –Part H, the Program for Infants and Toddlers With Disabilities, required states to develop and implement community-based systems of care that are coordinated, family centered, and culturally competent, with greater interagency collaboration –Requires early identification and provision of services to infants and toddlers with developmental delays and those with established conditions –Requires that the identified children be referred, free of charge, for a comprehensive, multidisciplinary evaluation by a team who, with the family, decides which services are needed. –Services are listed on the IFSP and reevaluated at least annually. A service coordinator is appointed who helps the family access them.

13 Early Intervention (cont) The Early Intervention Collaborative Study showed that: –Great variability of child and family function and of the types and extent of services offered –Most young children in early intervention programs improved in all domains of functioning Infant Health and Development Program (IHDP), a multi- center, randomized, controlled, nationwide study of low birth weight premature infants and their families who received coordinated health and developmental services for the first 3 years of life –Those who had received early intervention services scored higher at 3 years of age on tests of mental abilities than those who received health services alone –The cognitive and academic achievement in the higher birth weight group was maintained at 8 years of age –School outcomes of children in the intervention group were consistently better than those who did not receive intervention

14 Permanency Planning Permanency planning is the philosophy of providing a permanent family environment Pediatrician should work with the family to identify the range of long- term supports and services available for their child, including: –respite for biological families- shared parenting –foster care- alternate parents –adoption Families may consider other out-of-home placements when sufficient family-based services are not available, including: –group homes –placement in a nursing facility- institutional care Issues regarding quality of care can be individualized and judged by the parent or guardian, in close collaboration with the pediatrician and other professionals AAP Committee on Children with Disabilities. Helping Families Raise Children With Special Health Care Needs at Home. Pediatrics. 115(2), February 2005, pp

15 Transition to Adult Care Transition in health care for young adults with SHCN is a dynamic, lifelong process that seeks to meet their individual needs as they move from childhood to adulthood Physicians are of special importance in this process because of the frequent contact and the close relationships that often develop A well-timed transition from child-oriented to adult-oriented health care allows young people to optimize their ability to assume adult roles and functioning For many CSHCN, this will mean a transfer from a child to an adult health care professional; for others, it will involve an ongoing relationship with the same provider but with a reorientation of clinical interactions to mirror the young persons increasing maturity and emerging adulthood AAP, AAFP, ACP-ASIM. A Consensus Statement on Health Care Transitions for Young Adults With Special Health Care Needs. Pediatrics. 110(6), December 2002, pp


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