Transcript Issues for (Medically Complex) Children

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.
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Health Insurance
Medical Home Model
Care Coordination
Family-Centered Care
Early Intervention
Permanency planning
Transition to adult care
• 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. 2004 Sep;158(9):884-90.
Health Insurance
• American Academy of Pediatrics (AAP) policy
statement on recommended health benefits for
children through age 21
• For all children:
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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. 979-982
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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
Specialized Services for CSHCN
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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
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.
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. 1485-1492.
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.
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 family’s 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
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
Pediatrician’s Role. Pediatrics. 112(3) September 2003, pp. 691-696.
Early Intervention
• Various federal and state statutes now mandate that
community-based, coordinated, multidisciplinary, familycentered 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. 1155-1157.
Early Intervention
• 1975: Public Law (PL) 94-142, 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 99-457- 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 101-476, 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.
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 multicenter, 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
Permanency Planning
• Permanency planning is the philosophy of providing a permanent
family environment
• Pediatrician should work with the family to identify the range of longterm supports and services available for their child, including:
– respite for biological families
– foster care
– adoption
- shared parenting
- alternate parents
• 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. 507-511.
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 person’s 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.
1304- 1306.