PBH 805: Week 11 Slides

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Week 11
Chapters 11 & 12
Instructor: Gina Crosley-Corcoran, MPH
PBH 805 – Maternal & Child Health

Chapter 11
Children and Youth with Special Health Care Needs

Introduction
Children and youth with special health care needs (CYSHCN):
• “those who have or are at increased risk for a chronic physical,
developmental, behavioral, or emotional conditions and who also
require health and related services of a type or amount beyond that
required by children generally”
Some conditions that create special health care needs
include diabetes, cystic fibrosis, epilepsy, and anxiety or
behavioral problems, among others

National Survey of Children with Special
Health Care Needs (1 of 2)
Surveys
~30,000
children per
year, ages
birth to 17
years
Assesses the
physical and
emotional
health of the
children
First portion
of the survey
focuses on
the health of
the child and
family
Second part
of the survey
items focuses
on Title V
services block
grant
measures

National Survey of Children with Special
Health Care Needs (2 of 2)
20% of U.S. children younger than 18 years of age have a
special health care need
Increase in the prevalence of conditions such as asthma,
diabetes, obesity, ADHD, and autism spectrum disorders
CYSHCN were more likely to have two or more adverse
childhood experiences (ACEs).
Increased risk for health disparities for CYSHCN that are
members of minoritized populations (Mattson et al., 2019)

Social Determinants of Health
Defined as the “conditions
in which people are born,
grow, live, and age” by the
World Health
Organization
CYSHCN are at greater risk
for poor outcomes when
there is food insecurity,
housing instability, and/or
unsafe neighborhoods.
Addressing SDOH can help
to foster resilience and
reduce the negative
impact on health
outcomes of CYSHCN and
their families.

Minoritized CYSHCN
 Minoritized racial and ethnic groups will account for over one-
half of the U.S. population by 2045 (Frey, 2018).
 Culturally responsive health service delivery system is critical.
 Multiracial and African-American children have the highest
prevalence of asthma
 Seven times more likely to die from asthma-related complications
(Office of Minority Health, 2018)
 Differences in disability prevalence among Black and White
non-Hispanic children are primarily explained by socioeconomic
status (Goyat et al., 2016).
 Work towards reducing stigma and increasing inclusion of
individuals with disabilities

Evolution of Public Policy for CYSHCN
Social Security Act in 1935
•Required states seeking funding to create programs to support children with special needs
•Amended to require certification of surgeons and other CCS professionals (Hitchcock & Mulvihill,
2011)
•Expanded to provide grants to states (Aid to the Permanently and Totally Disabled), which
eventually became Title XVI, the Supplemental Security Income Program, in 1974
Coordination of care is a major challenge for all families with a special needs child.
Americans with Disabilities Act (ADA), enacted in 1990
•Provides equal opportunity for persons with disabilities and ensures the rights of many children and
families with special health care needs

Unique Needs of
CYSHCN and
Their Families
 Regardless of severity of condition, children, youth, and their families are impacted in similar ways
that can influence overall functioning and health across the life course.
 Higher risk of ACEs due to a reduced ability to ward off emotional, physical, and sexual abuse
 Greater amount of stress due to financial challenges of raising a child with CYSHCN and/or frequent
interaction with the medical system for their child
 Co-occurring mental health challenges and engaging in risky behavior, such as smoking, drug use,
and violent behavior
 Resilient in the face of adversity, particularly when they receive the appropriate supports when
transitioning to “childcare, school, and work”

Life Course Approach
 Perspective allows public health practitioners and
policymakers to look at health across the life span, with
the understanding that each stage of development is
integrated (Fine et al., 2009)
 Has been limited in application
 Improve the health outcomes of CYSHCN as they move
into adulthood, which will decrease the “burden of illness,
and by extension, the costs of care associated with adult
chronic disease” (Bethell et al., 2013, p. 469)

Mental Health
 Youth with chronic disabling conditions have higher prevalence
of mental health challenges.
 Families often report that their children have limited access to
mental health services or unmet mental health care needs.
 The medical home is an approach to care that ensures that
patients receive accessible, family-centered, continuous,
comprehensive, coordinated, compassionate, and culturally
appropriate care.
 Children of minority races/ethnicities and lower family
socioeconomic status have more limited access to needed
services.

Health Care Financing
 Significant stress is placed on families that are often already
experiencing a tremendous amount of stress due to
socioeconomic and environmental factors.
 Out-of-pocket expenses
 Utilities, clothing, equipment, food, medications, and therapy
expenses
 Exacerbated by the loss of income due to missing work
 Access to insurance and the type of insurance impacts access to
needed services for these children
 Underinsured, many families report having no insurance throughout
the year
 Private insurance does not cover care like Medicaid does.

Medicaid and CHIP
 As of 2017, Medicaid and the Children’s Health Initiative
Program (CHIP) cover almost half of all CYSHCN
 Based on household income or disability
 Those who do not meet the income eligibility can obtain
coverage through state Medicaid waivers.
 In over one-half of the states, CYSHCN are enrolled in home-
and community-based services, which permits a cap on
enrollment, often resulting in long waiting lists to access
waiver services and financial support
 Medicaid covers services that private insurance does not cover.

Medical Home/Family-Centered Care
 The need for an ongoing source of health care for all children has been
identified as a priority for child health care reform at the national and
local level.
 The six components of a medical home are (1) a usual place for sick/well
care; (2) a personal doctor or nurse; (3) ability to obtain referrals; (4)
access to care coordination; (5) family-centered care; and (6) transition to
adult life that is associated with treatment adherence, use of preventive
health services, and reduction of health disparities.
 Coordinated care is provided by developing a care plan that is shared with
families and all involved health care providers and community
organizations (American Academy of Pediatrics, 2020).
 Technology assistance programs (TAP) located in each state, loaner
programs, or financial assistance programs to help families acquire
assistive technology for CYSHCN

Parents as Partners in Health Care
 Medical providers should create an environment that
encourages positive interactions with families and promotes
their input and feedback in the care of the child and family.
 It is also important for providers to collaborate and partner with
families at all levels of service delivery.
 Additionally, providers must be respectful of cultural traditions,
values, and beliefs, and sensitive to language barriers.
 Placing families on advisory groups, quality improvement
teams, or in the role of parent partners within medical systems
of care improves health care delivery and outcomes for
CYSHCN.

Family-to-Family Support During the
Diagnostic Odyssey
 Partnering with families can help to mitigate the long diagnostic
process
 ~ 15 million children have an undiagnosed condition
 Lack of diagnosis leads to high rates of anxiety and depression in
parents.
 Exacerbated by having limited access to appropriate services to
support their child without a diagnosis
 Provide needed support to families from families who have
experienced the diagnostic odyssey
 Connecting families to parent-to-parent organizations and/or family-to-family
health centers
 Validating the concerns of families, discussing the prognosis, and providing
connections and referrals to needed supports

Care Coordination
 Providing support, needed information, and care
coordination has been shown to improve outcomes for
CYSHCN and their families.
 Important to develop a “community system of care”
 Includes the family, primary care provider, childcare provider, and
school personnel
 Care managers, social workers, parent partners, and family
navigators can all play an instrumental role in care
coordination.

Educational Supports
 Children spend the majority of their waking hours
throughout the week in school.
 IDEA and the ADA provide protections.
 IEP, which provides a road map to the specific strategies,
modifications, and services that a child needs in order to
be successful in the academic environment.
 504 plan puts accommodations in place to address
challenges with accessing the educational
environment due to a disability

Educational Supports
<Insert Table 11-1 Disability
Categories>

Transition Planning
 Adolescents with chronic conditions experience ongoing health
problems that require continuing interaction with the health
care system into adulthood.
 American Academy of Pediatrics, the American Academy of
Family Physicians, and American College of Physicians
developed a health care transition timeline and process for
medical providers (White et al., 2018).
 Lack of appropriate transition to adult health care has been
associated with poor outcomes, including forgone care,
mortality, and insufficient crisis management.
 It is essential to ensure that young adults with special health
care needs have continuous access to health care and benefits.

Conclusion
CYSHCN comprise a large
segment of the maternal and
child health population.
Special needs programs within
state Title V agencies are
uniquely placed to provide
direction and oversight to
ensure that the immediate
and long-term needs of
CYSHCN and their families are
addressed.

Chapter 12
Children’s Environmental Health

Children's Environmental Health
Environmental health is defined as
• “the science and practice of preventing human injury and
illness and promoting well-being by identifying and
evaluating environmental sources and hazardous agents and
limiting exposures to dangerous physical, chemical, and
biological agents in air, water, soil, food, and other
environmental media or settings that may adversely affect
human health."
• Children’s environmental health is a subfield within
environmental health that focuses on how environmental
exposures during fetal development and early life influence
health and development in and beyond childhood.

Introduction
 Environmental health plays a critical role in the health
and well-being of children and families.
 Environmental exposures have profound impact on
the health of women, children, and their families.
 Children’s environmental health includes social,
economic and political exposures.

Inequalities of Health Outcomes
Racial segregation and living in a neighborhood of poverty are linked to
poor health outcomes for women, infants, and children.
Inequitable exposures due to historic and systemic racism become
visible as health disparities.
• Black children are more likely to be born premature, have low birth weight, and die during
infancy.
• Black children have higher rates of asthma than White children and their asthma often is
more severe.
Inequalities in health outcomes between Black and White children do
not reflect genetic differences; rather, they are due to the economic,
political, and social environments (mediated by structural racism) that
affects a child’s physical, chemical, biological, and social exposures

Structural Racism
 Structural racism leads to inequities in environmental
exposures, which in turn lead to inequities in health outcomes.
 People who are Black or Brown have been systematically denied
access to capital and wealth.
 Discriminatory practices, such as redlining, segregate
communities and leave people of color living in low-wealth
neighborhoods (and low-wealth schools, etc.).
 Racial covenants used to keep people who were not White from
owning or operating certain lands add to the centuries of
structural racism.

Inequities in Environmental Exposures
 The air and water in primarily Black and Brown neighborhoods contain
many more toxic chemicals than White neighborhoods because
hazardous industrial sites, heavily travelled roads, loud noises, etc.
tend to be located near these neighborhoods.
 These communities often have less political power and are the least
able to fight the powerful interests who design and locate polluting
industries in their midst.
 Breathing polluted air and drinking polluted water have adverse
effects on children’s health and development, leading to
intergenerational harm.
 Individuals and families living near significant levels of pollution are
often unaware of these emissions because the contaminants may not
be easily seen or smelled, and the industrial discharges may occur at
night.

Environmental Justice Movement –
Example
In 1982 in Warren County, North Carolina, almost 500
community members protested the construction of a landfill for the
deposit of polychlorinated biphenyl (PCB)–contaminated soil.
• This shown a light on the fact that communities with greater percentage of Black and
Hispanic residents were more likely to be the sites of commercial hazardous waste
facilities.
• Three of the five largest commercial hazardous waste landfills in the U.S. were in
predominantly Black or Hispanic communities.
Environmental justice movement has generated more interest, but
little has changed because of the increasing power of polluting
industries and the weakening of environmental regulations.

Role of MCH Professional
 The MCH professional plays an important role in
dismantling racism and challenging environmental
injustice.
 National Association of County and City Health Officials
(NACCHO) in 2011 set up a website to explore:
 The social processes and mechanisms that produce health
inequities
 Strategize more effective ways to act on the root causes of health
inequities
 Form relationships with others who are working to ensure health
equity

Environmental Exposures Across
the Lifespan (1 of 4)
 Children are especially vulnerable to harm from environmental
exposures because their organs and body systems are still
developing.
 Young children have a rapid breathing rate and a high metabolic
rate, and may be more sensitive than adults to chemicals in the
environment.
 Disrupting the development of an organ or system can result in
permanent structural damage or functional disability that
affects a child throughout life.
 Preconception and the first trimester of pregnancy are thought
to be essential times for action because the basic structure and
function of many organs and systems are determined in early
fetal development.

Figure 12-1 shows the life cycle of exposure to lead, a well-researched
chemical, illustrating that exposures can occur in utero, infancy, childhood, and
adulthood.
<Insert Figure 12-1>

The characteristics of the
environmental exposure
and the age and
developmental stage of the
child affect the likelihood of
developing health
problems.
Child development occurs
at various times, and
during fetal development,
infancy, childhood, and
adolescence, particular
organs and body systems
may be at heightened
vulnerability.
Exposure of the fetus to
toxic substances, which
occurs by exposure to the
pregnant person, interferes
with neurons’ ability to
function at maximal
capacity.
This can result in slower
development among
children who are exposed
to toxic environments than
among those who are
unexposed.

the Lifespan
 Children’s exposure to pollutants in the air, water,
food, and soil is a major contributor to increased
morbidity and mortality.
 Exposures occur in the form of short term, high-
level, or long-term, low-level exposures.
 WHO estimated that approximately one-third of
the disease burden in low-income countries is
attributable to modifiable environmental factors,
including indoor and outdoor air pollution,
unsafe water, inadequate sanitation, and hygiene.
 The disease burden in low-income countries is
attributable to modifiable environmental factors
is two to three times higher than in the highest-
income countries.

Global Climate Change (1 of 2)
Human industrial
activities over the past
60 years have led to
major increases in
emissions of carbon
dioxide and other
greenhouse gases into
the atmosphere.
Climate change can
affect children’s health
by exposing them to:
• Elevated temperatures
• More frequent, severe, or
longer-lasting extreme
weather events
• Increased transmission rates
of food-borne, water-borne,
and vector-borne diseases
• Increased air pollution from
molds, pollens, and the
burning of fossil fuels
• Increased mental health
stressors
Climate change also
affects pregnant
women—specifically,
linked to preterm birth
and low birth weight

Global Climate Change (2 of 2)
Figure 12-2 Global environmental burden of disease
<Insert Figure 12-2>

Climate
Change
and
Human
Health

Epidemics of Environmental Illness
 Epidemics of environmental origin often have served to elucidate new
hazards for children.
 Many routinely used chemicals were first identified as toxic when a
cluster of children were exposed and developed symptoms during a
relatively short period of time. Unfortunately, these children served as
the “canaries in the coal mine.”
 Example:
 Epidemic of thyroid cancer in some 4,000 children following a radiation
release at the Chernobyl nuclear plant in Ukraine in 1986
 Epidemic of kidney stones among babies in China in 2008 from drinking
melamine-contaminated infant formula
 Epidemic of lead poisoning in Nigeria in 2010 from small-scale gold mining
 Epidemic of acute lung injury among young adults in the U.S. in 2019 following
use of electronic nicotine delivery (i.e., vaping) devices

Major Chemical
Agents of Concern
for Health
Tobacco and nicotine
Outdoor air pollutants
Carbon monoxide
Lead
Mercury
Arsenic
Pesticides
Persistent organic pollutants
Phthalates

Major Biological
Agents of Concern
for Health
• Molds and mycotoxins
• Aflatoxins
• Ochratoxin A
• Fumonisins
• Trichothecene mycotoxins deoxynivalenol
• Satratoxins

Major Physical Agents of Concern for Health
RADIATION IONIZING
RADIATION
RADON

Regulation of Environmental Chemicals
In the U.S., the three regulatory agencies that are most
relevant for environmental health are:
• Environmental Protection Agency: EPA regulates the chemical based
on its intended use rather than the toxicity.
• Consumer Product Safety Commission: CPSC is responsible for
ensuring that consumer products are safe.
• Food and Drug Administration: FDA regulates the safety standards of
new drugs and medical devices.
All the three regulatory agencies have missions that
include protecting the public health.

Case Studies
Phthalate exposure in
neonatal intensive care:
• FDA failed to require
manufacturers of
medical devices used in
neonatal intensive care
to label the DEHP
content on their devices
even though evidence
suggest that some
populations of
neonates were exposed
to levels that could
exceed the safe dose by
a factor of 20.
Arsenic exposure from
CCA-wood play
structures:
• CPSC did not recall
existing structures and
has done nothing to
prevent children’s
continued exposure to
chemicals that it has
concluded are pervasive
in children’s
environments and are
very harmful.
Bisphenol A exposure
from food packaging:
• FDA ban on BPA in baby
bottles, sippy cups, and
infant formula
packaging, was a result
of market conditions
(i.e., suppliers’ removal
of BPA in response to
consumers) rather than
on the basis of safety.

Lessons from the
Case Studies of
Environmental
Regulation(1 of 2)
• These three case studies illustrate the following points:
• The importance of public policy for maternal and child health
• The importance of maternal and child health for public policy (e.g., the
focus of the BPA debate on baby bottles)
• The importance of open debate for maternal and child health, including a
free, investigative press (e.g., the press article on conflict of interest
regarding BPA findings at NIH)
• The influence of industry on public policy, often to the detriment of
maternal and child health (e.g., a company whose interests [regarding
BPA] might have been at odds with those of the MCH community being
involved with the BPA findings at NIH)

Lessons from the
Case Studies of
Environmental
Regulation(2 of 2)
 The long time it takes to determine public environmental/health policy
in the U.S.
 The contention that can surround MCH environmental issues
 The availability of other avenues to effect policy change (de facto)
available to the public, including MCH professionals, besides working
through government agencies (e.g., consumer action regarding BPA)
 The importance of local action (in the case of BPA, state, and municipal
action)

Prevention and Levels of Prevention
 Prevention has different levels:
 Primordial
 Primary
 Secondary
 Tertiary
Figure 12-7 shows the levels of prevention with examples.

Primordial Prevention
 The strongest approach to preventing environmental
health exposures is primordial prevention, which focuses
on stopping or reducing the introduction of harmful
chemicals into the environment.
 This upstream action is most effective in reducing
population exposure levels.
 Examples:
 Lowering the amount of lead in gasoline led to a dramatic
reduction in population lead levels around the world.
 Similarly, banning the use of certain persistent organic pollutants
(e.g., polychlorinated biphenyls [PCBs]) markedly reduced the
levels of these chemicals in breast milk.

Primary Prevention
 The goal of primary prevention is to prevent disease well before it
develops, or to reduce the risk factors for an illness or condition.
 Many primary prevention efforts happen at the level of the individual
or the family, and they often focus on preventing personal exposure.
 Avoidance of exposure to adverse chemical, biological, physical, and
social agents is much less effective than primordial prevention, but
sometimes avoidance is the only choice.
 Some of the adverse effects of chemicals on infants can be
counteracted by breastfeeding. There are many structural challenges
that make it difficult for mothers to breastfeed their babies that are
also linked to structural inequities that need to be addressed.

Secondary Prevention
 The goal of secondary prevention is the early detection
and treatment of disease.
 Testing a sample of blood to determine a child’s lead level
is an example of secondary prevention.
 Unfortunately, by the time the blood lead level is elevated,
the exposure has already occurred.

Tertiary Prevention
 The goal of tertiary prevention is to treat the disease or
condition and, if possible, to prevent its progression.
 Unfortunately, few medicines are available for tertiary
prevention of environmental illnesses.
 If a child has a blood lead level above 45 μg/dL, chelation will
reduce the blood lead level, but this therapy has not been
documented to reverse the neurologic deficits from lead
poisoning.
 Tertiary prevention of asthma and other respiratory diseases
can include inhalers and other prescription drugs that help to
open the airways.

Chapter 12 Conclusion
Structural racism leads to
inequities in environmental
exposures and health
outcomes.
Exposures during fetal
development and early
life—physical, chemical,
biological, nutritional, and
social—influence health
and development in
childhood and across the
entire human lifespan.
Human activity is currently
the dominant influence on
climate and the
environment.
Epidemics of
environmental origin often
have served to elucidate
new hazards for children.
Many of the routinely used
chemicals now understood
to be toxic to children were
first identified through
epidemic investigations.

Week 11 Assignments
Quiz on Chapter
MCH Program/Policy
Memo

PBH 805: Week 11 Slides

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