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Enhancing Health Care Transition for

Youth and Young Adults Living with


Chronic Medical Conditions
and Disabilities

Suggestions for Reform

Brenda L. Gleason, M.A., M.P.H.


Jo Palmer
Santi K.M. Bhagat, M.D., M.P.H.
John Reiss, Ph.D.

October 2009
Gleason B, Palmer J, Bhagat S, Reiss J. Enhancing Health Care Transition for Youth and
Young Adults Living with Chronic Medical Conditions and Disabilities: Suggestions for
Reform. Coalition for Young Adults Living with Chronic Medical Conditions and Disabilities.
October 2009.
Preface
This white paper was produced by Physician-Parent Caregivers, Inc. on
behalf of the Coalition for Young Adults Living with Chronic Medical
Conditions and Disabilities. Brenda Gleason, M.A., M.P.H., and Jo Palmer
of M2 Health Care Consulting, Santi Bhagat, M.D., M.P.H., of Physician-
Parent Caregivers and John Reiss, Ph.D., of the University of Florida authored
this paper with ongoing input from Coalition members.
The Coalition is committed to enhancing research, training and reform
efforts related to quality health care for youth and young adults living with
chronic medical conditions and disabilities. This paper is the first in a series.
For a complete list of coalition members, please visit us online at
http://www.ppc-inc.org.

About PPC
Physician-Parent Caregivers, Inc. (PPC) believes that all children, young
adults, and their families are entitled to Quality Health Care. Building on
the unique perspective of physicians who are parents of Children & Young
Adults with Chronic Medical Conditions & Disabilities (CMCD), PPC works
with children, young adults, families, and physicians to find solutions for the
delivery of optimal health care.
As a grassroots, voluntary, board-run organization, we strive to represent the
views of families and physicians in the community. While a framework has
been established to advance the agenda for children and young adults living
with CMCD, we as a nation have just begun to take action. Much work
remains to be done and a sense of urgency is needed. PPC’s goal is to find
solutions that will make quality health care the norm for children and young
adults with CMCD.
Visit us at http://www.ppc-inc.org.
Executive Summary.............................................................................................................1
Background..................................................................................................................................4
Youth and Young Adults with CMCD Defined...........................................................5
Types of Conditions...........................................................................................................6
Developmental Disabilities...........................................................................................7
Types of Care.........................................................................................................................8
Transition ...........................................................................................................................................8
Health Care Transition..................................................................................................10
Transition from Pediatric to Adult Insurance Coverage .........................12
Moving from Public to Private Insurance Coverage ................................13
Moving from Private Family Coverage to
Private Individual Coverage. .....................................................................................15
Coordination..................................................................................................................................17
Care Coordination Defined.......................................................................................18
The Medical Home.........................................................................................................19
Reimbursement Issues for Care Coordination Activities........................20
Transition from Pediatric to Adult Medical Care ..................................................21
Health Care Transition Clinics. ................................................................................22
Access to Care for Young Adults with CMCD..........................................................23
Lack of Specialty Care Providers............................................................................25
Young Adults Struggle to Find Needed Health Care.................................26
Recommendations for Health Care Reform..........................29
Implementation of Data Collection and Analytic Activities.................30
Streamlining and Simplifying Public Programs.............................................30
Conclusion.................................................................................................................................32
Endnotes. .........................................................................................................................................34
Executive Summary

Enhancing Health Care Transition for Youth and Young Adults Living with Chronic
Medical Conditions and Disabilities: Suggestions for Reform

Almost one in five, or 8.8 million, American households include at least one child
with a chronic medical condition or disability. The number of young people with
chronic medical conditions and disabilities (CMCD) has increased over the past
four decades to over 10 million children and 5 million young adults.

Although youth with CMCD account for a small percentage of individuals


under age 17, the costs associated with treating and caring for this population is
approximately three times higher than for those without CMCD. In Medicaid, youth
with disabilities account for less than 10% of recipients, but nearly 30% of costs.

The combination of 15 million youth and young adults with CMCD and the aging
of this group mean costs will only increase. Chronic disease prevalence and burden
has grown rapidly in the past 20 years and highlights the inadequacies of our current
health care system. Designed to meet emergency and acute care needs, people who
have ongoing diseases or conditions find the system lacking essential qualities such
as coordinated care and access to providers and specialists, to name a few.

This white paper sets out to establish why it is so important to address the evolving
needs of youth and young adults living with CMCD, ages 12 to 30 years, as they
transition into adulthood, especially as the nation discusses health care reform
more broadly.

Addressing health care transition, coordination, continuity and access needs of the
15 million young Americans living with CMCD could not only slow the growth of
health care costs, quality health care supports could also assure these young adults
are healthy enough to make active contributions to society. Transition and related
health care supports are important components of overall health care reform.

Several possible strategies might be considered. Youth health care transitions to


adult health care could be improved by changes to insurance rules, reimbursement
policies and the medical workforce.

While much of the health reform debate is focused on ideas such as a creating
a public plan, forming insurance exchanges and mandating coverage, two core
concepts that appear in proposals offered by those on both sides of the aisle would
benefit youth and young adults living with CMCD:

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1. Prioritizing care for the chronically ill
2. Improving coordination of care

More specifically, the elements of health care reform proposals that would
significantly enhance health care transition include:
➢➢Offering incentives for coordination, e.g., paying physicians for
coordinating care
➢➢Utilizing a medical home model
➢➢Enhancing health outcomes through the use of activities such as:
• Quality reporting
• Effective case management
• Care coordination
• Chronic disease management
• Medication and care compliance initiatives
➢➢Encouraging innovative approaches to clinical teaching using models
of primary care, such as the patient centered medical home, team
management of chronic disease, and interprofessional integrated models
of health care that incorporate transitions in health care settings and
integration of physical and mental health
➢➢Collaborating with local primary care providers and state and community
based resources to coordinate disease prevention, chronic disease
management, transitions between health care providers and settings and
case management for patients, including children

While these elements in the various approaches to health care reform do address
some of the needs of this population, two key issues are being overlooked.

First, little information is available about this population’s use of health care
services and related supports, especially as individuals move from pediatric to
adult-oriented providers and facilties. This makes it impossible to project what
impact specific health care policy proposals may have on access to and utilization
of primary and specialty care services, and how improved care coordination and
health care transition services and supports could both save money and enhance
patient outcomes.

Second, more work needs to be done to make health, education, employment, and
independent living services and supports easy to use. While this paper focuses
primarily on the medical aspects of the health care system, “health” includes

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the ability to lead a fulfilling life. Much has been done over the past 30 years to
develop services for youth and adults with CMCD. So much, in fact, that more than
200 federal and state programs have been identified. Therefore, “system navigation”
services should be developed and promoted in health care and other settings
where individuals with CMCD interact with the various parts of the expansive, but
complex social services system.

As stated in the 2007 Institute of Medicine The Future of Disability report, “...the
future of disability in America will depend on how this country prepares for and
manages a complex array of demographic, fiscal, medical, technological, and other
developments that will unfold in the next several decades. Inaction will lead to
individual and societal costs—avoidable dependency, diminished quality of life,
increased stress on individuals and families, and lost productivity.”

We now have an opportunity to help ensure that today’s youth and young adults
with chronic medical conditions and disabilities will have access to the health
care transition, system navigation and related supports they need to reach their full
potential.

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Background

Health care in the United States costs more than $2 trillion a year1, and a large
portion is spent on people with chronic or ongoing disease. The magnitude of the
issue becomes clearer when you consider that of the more than 300 million people
in the U.S., about 133 million have a chronic condition.2

Almost one in five, or 8.8 million, American households include at least one child
with a chronic medical condition or disability.3 The number of young people with
chronic medical conditions and disabilities (CMCD) has increased over the past
four decades to over 10 million youth and 5 million young adults.4,5,6 Additionally,
the frequency of chronic medical conditions increases with age, as seen below in
Table 1. Young adults diagnosed with CMCD (ages 18 to 30) are included in the
total population of adults with CMCD because the young adult population has not
been formally defined or studied.7 The needs of young adults with CMCD now and
as they age are a part of the health care system that is largely uncharted territory.

Table 1.

Percentage of U.S. with Chronic Medical Conditions


and Disabilities by Age
Age Percentage
Children up to 5 years old 8%
Youth 12-17 years old8 16%
Young adults 18-30 years old unknown
Adults 18-64 years old9 45%

Although youth and young adults living with CMCD account for a small percentage
of individuals under age 18, the costs associated with treating and caring for this
population is approximately three times higher than for those without CMCD.10
In the Medicaid program, children with disabilities make up less than 10% of the
children served, but account for nearly 30% of costs.11

Most importantly, Table 1 shows almost half of the adult population (ages 18 to
64) has a chronic medical condition or disability. According to the Institute of
Medicine, “the total number of younger adults with disabilities currently exceeds
the total number of individuals with disabilities from the population ages 65 and
over.”12 Many young adults with childhood conditions that were formally fatal now
live with the aftereffects of treatments, such as chemotherapy, secondary health
conditions and premature aging. Dr. Roberta Williams, the Chair of Pediatrics at

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the University of Southern California School What is it Like?
of Medicine, says because of a “lack of
The View from a Young Adult
preparation, paucity of appropriately trained
Diagnosed with nephrotic syndrome at the
providers and centers, inadequate insurance
age of 12, Deidra Hall of North Carolina
coverage, physician/parent/patient attitudes, knows first-hand what it is like to transition
and cognitive impairment...it is likely that from youth to adulthood with a chronic
secondary disabilities might accelerate and medical condition. Deidra received a
kidney transplant in 1994 when she was 16
result in increased costs in later years.”13
years old. Covered by her parents’ medical
insurance until she was a young adult, Deidra
The combination of 15 million youth and
considers herself lucky to have had access to
young adults with CMCD and the aging of coordinated care and providers who taught
this group mean health care costs will only her how to manage her disease herself so
increase. Chronic disease prevalence and she could move away from home and attend
college.
burden has grown rapidly in the past 20
years and highlights the inadequacies of A stay-at-home mom and mother of two,
Deidra became uninsured early in 2009
our current health care system. Designed
when her husband was laid off. Now, only
to meet emergency and acute care needs, one firm in her home state of North Carolina
people who have ongoing diseases or will cover her because of the pre-existing
conditions find the system lacking essential medical condition - at $1,600 per month.
qualities, such as coordinated care and With her husband out of work, they can’t
access to providers and specialists. This afford the premium, so Deidra is depending
on the generosity of her nephrologist, who
white paper sets out to establish why it is
has agreed to cover the costs of her routine
important to address the evolving needs of lab tests and office visits. While her condition
youth and young adults living with CMCD was well-managed for a time, Deidra recently
as they transition into adulthood, especially experienced symptoms of rejection and was
hospitalized for 11 days. On the verge of
as the nation discusses health care reform
losing her kidney, she explained, “I’d rather
more broadly. Addressing health care live than worry about how the bills are going
transition, coordination, and continuity and to be paid.”
access needs of youth and young adults Deidre is now at home recovering, and
with CMCD is important to slow the growth the hospital is helping her purchase her
of health care costs and assure these young medications and is assisting by paying
the COBRA premiums on her husband’s
adults are healthy enough to make active
insurance through the month of her
contributions to society. hospitalization. They are also helping
her apply for Medicaid, but the future is
uncertain.
Youth and Young Adults with The way the system works “makes it difficult
CMCD Defined for someone like me,” explains Deidra. “I
want to be an entrepreneur. I want to start
The Maternal and Child Health Bureau something new to help other people know
(MCHB) resides within the U.S. Department you can not only exist, but you can be
successful with kidney disease.”
of Health and Human Services. Starting
as the Child Health Bureau in 1912, then

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formally established through the Social Security Act in 1935, MCHB oversees
programs and services that assure the health of mothers and children across the
nation. With a budget of almost $1 trillion annually, the MCHB has a primary
responsibility of “providing family-centered, community-based, coordinated care
for children with special health care needs.”

In 1998 MCHB established the following definition of “children with special


health care needs” (CSHCN) for the purposes of planning, reporting and systems
development:

...those (children) who have or are at increased risk for a chronic


physical, developmental, behavioral or emotional condition and who
also require health and related services of a type or amount beyond that
required by children generally.14

In keeping with the MCHB definition of CSHCN, this paper uses the term youth
and young adults with chronic medical conditions and disabilities (CMCD) to mean
individuals aged 12 through 30 years who have a chronic physical, developmental,
mental, behavioral or emotional condition or disability.

Types of Conditions

What conditions, diseases and disorders are youth and young adults with CMCD
living with? The range is broad and difficult to categorize, in part because many
youth and young adults with CMCD have multiple conditions. Almost one-third
have two conditions, and one-quarter have three or more conditions.15 Additionally,
young adults with CMCD are at an increased risk for developing secondary mental
health problems, such as anxiety, depression and suicide, and are at risk for
medical problems due to early aging.16,17,18

Examples of CMCD19
• Allergies • Diabetes
• Asthma • Down syndrome
• Attention deficit disorder/attention deficit • Epilepsy
hyperactivity disorder • Hearing impaired
• Autism or autism spectrum disorder • Hemophilia
• Cerebral palsy • Intellectual disability
• Chronic kidney disease
• Juvenile rheumatoid arthritis
• Congenital heart disease
• Cystic fibrosis • Multiple sclerosis
• Depression, anxiety, or other mental • Muscular dystrophy
health problems or conditions • Sickle cell disease
• Developmental disabilities • Spina bifida

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Developmental Disabilities

Developmental disabilities (DD) include conditions such as intellectual disability,


cerebral palsy and autism, and represent a large subset of conditions that affect
youth and young adults with CMCD. The meaning of the term “developmental
disability” has undergone many modifications over the past few decades.
Originally, referring to mental retardation, cerebral palsy, epilepsy, and other
neurological conditions, the most recent definition includes a functional aspect,
focusing on the inability of an individual to perform certain life activities. The
Developmental Disabilities Assistance and Bill of Rights Act (as reauthorized in
2000) defines developmental disability as:

..a severe chronic disability attributable to a mental and/or physical


impairment, manifesting before age 22, likely to continue indefinitely,
and resulting from limitations in three of seven life activities; self-care,
language, learning, mobility, self-direction, capacity for independent
living, and economic self-sufficiency.20

For children, the definition of developmental disability focuses on “the existence of


conditions with a high probability of resulting in a developmental delay.”21 Blindness,
deafness and other sensory limitations are included in the definition when they
occur in conjunction with intellectual impairments. Generally, DD are conditions
that originate during childhood and require coordinated services, support or other
assistance for an extended period of time or an entire lifetime. A study in the Archives
of Pediatric and Adolescent Medicine, estimates the prevalence of children and youth
with developmental disabilities to be about 13%.22

This study also reports that having a developmental disability can affect a child’s
health and can also have a significant impact on the family. Families with a child
with DD face substantial financial and caregiver burdens, and the child has higher
rates of emergency room visits, physician office visits and hospitalizations (when
compared to children without a DD). The study showed neurodevelopmental
disorders such as autism, cerebral palsy and intellectual disability had the greatest
impact on health and functioning. These children also had multiple functional
limitations, causing them to need more physical, occupational, or speech therapy
than children without DD.

Types of Care

The medical and health care needs of youth and young adults living with CMCD
can be intense and long-lasting. Almost all of these young people need prescription
medications to manage their disease.23 More than half need treatment from
specialists such as cardiologists, neurologists, and rheumatologists; and specialized

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therapies such as physical, occupational, or
Examples of Services Needed speech therapy. Many also require special
by Children and Young Adults medical treatments, such as respiratory care or
with CMCD organ transplantation.
• Dental treatment
While a broad range of conditions and
• Disposable medical supplies diseases affect youth and young adults with
• Durable medical equipment CMCD, their prevalence is spread quite evenly
• Home or in-center dialysis across income categories. For young children
• Mental health care and the elderly, health care needs are more
intense among lower income individuals, but
• Physical, occupational, or speech therapy
this is not the case for youth with CMCD;
• Prescription drugs disability rates hold steady, even as family
• Specialty care income rises.24 Further, youth and young
adults across income and insurance categories
have difficulty obtaining all of the health care
services they need. Even families with private insurance and higher incomes report
that some of the medical and related needs of their adolescent and young adult
children with CMCD go unmet.25 As with all children and adolescents in the U.S.,
dental treatment and oral health care “is the most prevalent unmet health care
need” among youth and young adults living with CMCD.26

Transition
There are several different types of transitions young adults with CMCD encounter
as they move from childhood to adulthood, including transition to post-secondary
education or vocational training, transition to work, transition to independent
living, and health care transition. The Future of Disability in America, published
by The Institute of Medicine in 2007, notes the importance of addressing these
multiple issues including health care transition, coordination and continuity of
care, and access as essential for the U.S. health care system as a whole. The report
defines transition as involving:

...a significant change or set of changes in a person’s life circumstances


during a relatively limited time period rather than over the life span.
Transitions may involve changes in social roles (e.g., from a minor to a legal
adult), changes in living arrangements (e.g., from the family home to an
independent living arrangement or from the family home to an institutional
setting), or changes in functioning related to events such as traumatic
injuries. Over a life span, a person will typically experience many transitions,
with the transition to adult life being one of the most momentous. 27

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Transition can be supported by policies and programs. For example, the Individuals
with Disabilities Education Act (IDEA) requires schools to develop an individualized,
written transition plan that addresses post-secondary education, vocational training,
work, and independent living for all students, age 16 or older, who receive special
education services.28

While IDEA does not require that health care be addressed in school-based transition
plans, students with CMCD would clearly benefit from having health related issues
addressed in their school-based or other transition plans.29

The state of their health is primarily what separates students with CMCD from their
peers, so these young people must be able to continuously access needed health
services and efficiently make the move from pediatric to adult oriented care if they
are to reach their full potential. The knowledge, skills and experiences young people
need to be the leader in their own health care can, in part, be provided through the
schools and should be integrated into IDEA transition plans.

That being said, a key characteristic that young people need to acquire to successfully
transition to adulthood is self-determination. Self-determination is the drive to
determine our own thoughts, feelings, behaviors, and choices over life events. It
includes the internal motivation and self-awareness that encourages us to define
personal goals based on our interests, preferences, values, and needs.30

MENTAL HEALTH
The mental health needs and issues for children and young adults with CMCD are
extremely serious. While beyond the scope of this white paper, it is essential to
understand the interplay of medical and mental health for this vulnerable population.
➢➢Four out of five children with mental health problems do not get evaluated
or treated.i
➢➢Of parents with a child with a known mental health issue, almost half report
an unmet need for mental health services.ii
Studies show parents don’t always discuss mental health issues with the pediatrician,
perhaps because coexisting co-morbidities seem more important than addressing
mental health issues during office visits. Additionally, many parents perceive mental
health services necessary only when the pediatrician recommends them; however, it
has been found that pediatricians under-recommend mental health services.
Mental health needs are serious and often go unmet in children and youth with CMCD.
Routine screening, better coordination of care, increasing the number of specialty
pediatricians and home health providers and expanding coverage for a wider range of
mental health services are but few of the ways better outcomes could be achieved.
Leatherman S, McCarthy D. Quality of Health Care for Children and Adolescents:A Chartbook. The Commonwealth Fund. April 2004.
i

Warfield M, Gulley S. Unmet Need and Problems Accessing Specialty Medical and Related Services Among Children with Special Health Care
ii

Needs. Maternal and Child Health Journal, Vol. 10, No. 2, March 2006.

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Health Care Transition

The result of a national invitational conference in 2001, a consensus statement


regarding transition was issued by the American Academy of Pediatrics, the
American Academy of Family Practice, and the American College of Physicians-
American Society of Internal Medicine. Chairperson, Dr. Robert Blum, sees the
statement as setting forth the “critical first steps that the medical profession needs
to undertake if the vision of a family-centered, continuous, comprehensive,
coordinated, compassionate and culturally competent health care system that is as
developmentally appropriate as it is technically sophisticated is to be realized.”31

The consensus statement also calls upon all physicians who treat these individuals
to:
1. Understand the rationale for transition from child-oriented to adult-
oriented health care;
2. Have the knowledge and skills to facilitate that process; and
3. Know if, how, and when transfer of care is indicated.

These steps are in full accord with the Healthy People 2010 goal for all young
people with ongoing health care needs to receive the services necessary for health
care transition.

Though children, youth and young adults routinely experience transition issues
related to changing health care, the intricacies of their disease combined with the
intensive levels of care from both medical providers and support systems including
parents, teachers, social workers and others, make health care transition for
youngsters living with CMCD fraught with risk and uncertainty. Physicians describe
health care transition for the CMCD population as “the provision of high-quality,
developmentally appropriate health care services that continue uninterrupted as the
individual moves from adolescence to adulthood.”32 One of the core goals of this
process is to maximize lifelong functioning and potential of the young person.

Health providers and researchers describe the health care transition process as
having three phases:
➢➢Preparation for transfer,
➢➢Transfer, and
➢➢Integration of the young person into the adult health system.

Preparation for transfer refers to training and educating the young person and
family so they are prepared for the transfer to the adult system. Training includes,
for example, improving the young persons’ understanding of their CMCD, self-

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determination, self-care skills, and ability to communicate effectively with health
care professionals. Self-determination enables the young person to set priorities
and to initiate and maintain health behavior change.33 It is a priority to involve
young persons with CMCD actively in the process of transfer and promote their
ability to exercise self-determination. Preparation for transfer also refers to work
that providers may do regarding referral to an adult provider, planning continuous
health insurance, etc.

Transfer is an event. In its simplest form, it is the event of leaving pediatric


providers and starting with adult providers. Transfer also refers to the exchange of
information, for example, medical records and summaries from pediatric to adult
providers.

Integration of the young person into the adult health system refers to those things
that adult providers and facilities might do to orient the new patient to the world
of adult medicine, including educating them as to how to negotiate adult systems
and making them aware of modifications of “standard adult practice” that may
be made in order to help assure the new patient will continue to seek care from
the new adult providers. Orientation can include having a tour of the adult clinic
and meeting staff before the first medical appointment. Education about how to
navigate adult care might include:
➢➢How to make appointments,
➢➢After hours and weekend access to the clinic and providers,
➢➢How phone calls into the doctor are handled,
➢➢Types of insurance coverage reimbursed, and the
➢➢Use of specialty referrals.

Accommodations for individuals with CMCD might include having longer


appointments, having shorter periods between visits, using parents and/or significant
others as a source of medical information, providing additional self-management
training, and ensuring the environment of care is acceptable to young adults.

In addition to transitioning from one insurance type to another, young adults often
find acceptable care difficult to find.34

Because finding a qualified health professional to address CMCD can be a


challenge, some young adults simply continue to see their pediatric specialist.
Cases of patients well into their 50s with diseases like cystic fibrosis seeing the
pediatrician who first treated them are not unheard of. Transitioning to another
physician is either so difficult or so traumatizing, that the young adult, and then the
middle-aged adult simply don’t move on from their childhood providers.

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Transition from Pediatric to Adult Insurance Coverage

Figure 2 shows the dramatic change in insurance coverage that young people
experience when they turn 18 years of age. This group as a whole falls off a cliff, so
to speak, as programs designed to cover children, such as parent’s insurance plans,
Medicaid and the State Children’s Health Insurance Program (SCHIP) become less
available.

Figure 2.

Percent Uninsured by Age Group


30%

25% Under 18 years of age

20% 18 to 24 years
24 to 34 years
15%
35 to 44 years
10% 45 to 64 years

5% 65 years and older

0%
2006 2007

Source: U.S. Census Bureau, Income, Poverty and Health Insurance Coverage in the
United States: 2007. Issued August, 2008.

Growing up for many youth or young adults may mean moving away from home,
perhaps to go to college, get married, or start a job. Living on their own for the first
time, young adults must learn to balance spending and income. Not surprisingly,
young adults ages 18 to 29 are one of the “largest and fastest-growing segments
of the U.S. population without health insurance.”36 In many cases, becoming an
adult means the young person is now on their own, working and paying rent or a
mortgage. If their employer does not offer health coverage, or the price for insurance
is too steep, many people choose to go without – a decision much more likely to be
made by young adults.

In the case of young adults with CMCD, this already difficult decision is exacerbated
by a number of issues. First and foremost, by definition, the young person has a
pre-existing condition. They may be turned down for health insurance in the private
market or asked to pay higher premiums to cover their CMCD. Second, certain
medical conditions may be chronic, but not urgent, leading the individual to think

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they can “go without” health insurance
because they aren’t sick currently. Mini-case:
Third, moving from their parents’ A 22-year-old with rheumatoid arthritis
insurance policy might mean they also When she was 12-years-old, a patient was
have to change physicians. While many seen by a pediatrician who specialized in
of us are faced with such a change if rheumatic diseases in children. Because
our insurance coverage changes, in of her status as a youngster with what
she understood to be “an old person’s
the case of a young adult with CMCD, disease,” a specialist was in order. But
such a change could disrupt a carefully as an adult, she no longer needs special
calibrated treatment and care regimen, care, and can see a rheumatologist
which has been in place for years. for routine check-ups. In so doing,
however, the 22-year-old sits in a waiting
Young adults with CMCD are subject room with 70 and 80-year-olds. It is
an uncomfortable setting for her, and
to different types of insurance transition sometimes she chooses not to go in for
issues: her quarterly check-up – making a flare-
up more dangerous if it happens.
➢➢Moving from Medicaid/
SCHIP to private coverage as
youth age into adulthood
➢➢Moving from private family coverage to private individual coverage
• Difficulty finding/maintaining academic-sponsored insurance
• Difficulty finding/maintaining employer-sponsored insurance

Moving from Public to Private Insurance Coverage

Medicaid is the state/federal program that provides health coverage to low-income


people in the U.S. In 2007, 52 million people were served by Medicaid. Medicaid
covers more than 31 million children nationally.37 According to the Kaiser
Commission on Medicaid and the Uninsured, 70% of low-income children with
disabilities are covered by Medicaid, and 20% of all children with disabilities have
Medicaid.38 Certain programs within Medicaid are specifically designed to assist
children with CMCD. The Early Periodic Screening, Diagnostic, and Treatment
(EPSDT) component of Medicaid guarantees children will be screened and treated
for certain diseases and disorders between the ages of 0 and 18 to 21, depending
on how a state defines “adult”. Through EPSDT children receive routine medical,
vision, dental and hearing screenings. They also receive comprehensive physical
health exams and appropriate vaccinations.39

The original intent of the EPSDT component of Medicaid gives a sense of the
foresight and importance of the policy. Enacted in 1967, the program was created,

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in part, to address the issue of military draftees being rejected due to untreated
childhood illnesses. Specifically, the EPSDT provision states that services must be
provided

…to correct or ameliorate defects and physical and mental illnesses and
conditions. This conception of medical necessity, rather than requiring
services only if they improve or eliminate a condition, requires services
needed to stabilize conditions or maintain function. For children with
disabilities and chronic illnesses, for whom medical services are not likely
to correct or cure their conditions, these kinds of services can improve
the chances of leading fuller and more independent lives.40

If a child is diagnosed as having a medical condition during an EPSDT screening,


the Medicaid program is required to pay for all services that are medically
necessary to ameliorate that condition, even if the amount, duration or scope of
these services exceed those included in the Medicaid state plan. Certain diseases
and disorders are more prevalent, such as oral disease and tooth decay (the most
common disease among Medicaid eligible children).41

The Medicaid/EPSDT program is considered by advocates to be a “critical


component of the health care safety net.”42 It creates a bridge to access care for
many youth and young adults who might not have had any other way to obtain
health care services. The program is further extended when states choose not to
create a separate SCHIP program, but instead extend Medicaid to SCHIP eligible
children. If the state chooses expansion, the complete Medicaid benefits package
must be made available to SCHIP recipients, including all the services covered by
EPSDT.

Although Medicaid is generally considered to improve access to care for children


and youth, a significant health care transition issue occurs when those with CMCD
reach adulthood. Since Medicaid only covers children until the age of 18 to 21
years of age, and SCHIP only covers youth up to their 19th birthday, young adults
with CMCD are often left without any health insurance, which severely limits
their access to health services. The main exception is if they qualify for disability
by virtue of income or a determination of long-term impairment and can become
eligible for Medicaid again, or Medicare.

Medicaid eligibility is generally determined using financial (income and resources)


criteria. Federal law sets minimum requirements, but states may set higher
guidelines. Generally, children under six years of age whose family income is at or
below 133% of poverty and children ages 6 to 19 with a family income up to 100%
of poverty are eligible for benefits. In most states, those receiving Supplemental
Security Income (SSI) are eligible for Medicaid. States are also authorized to

14
provide benefits to other optional eligibility groups and the medically needy—those
whose income exceeds the financial guidelines but still need assistance with health
insurance—if they choose. States can also provide Medicaid benefits to full-time
students under age 21.43

However, financial eligibility criteria for Medicaid for adults are much more
restrictive than the criteria for children. Childless adults, for example, cannot be
covered under the federal Medicaid program rules. If a state wants to provide
Medicaid coverage to an adult who is not a parent, they must do so using state
dollars only, and must obtain a Medicaid waiver to do so. Further, Medicaid
beneficiaries over age 21 are not covered by EPSDT protections, and the type,
amount, duration and scope of services they receive as adults can be significantly
less than that which they received as a child.

Moving from Private Family Coverage to Private Individual Coverage

While Medicaid does have some coverage limitations, the public health insurance
program provides families with a greater level of financial protection than do
most private insurance plans. While about 15% of families with youth or young
adults with CMCD who have public insurance spend more than 10% of their
family income on health costs, about 20% of families with private insurance have
a financial burden exceeding 10% of their income.44 As would be expected, ever-
rising health costs in the U.S. are putting an increasing financial burden on families
supporting youth or young adults with CMCD.

Difficulty finding/maintaining academic-sponsored insurance


A comprehensive review of college health insurance benefits conducted by the
General Accountability Office in 2008 showed that, in 2006:
➢➢80% of students ages 18 to 23 enrolled in college had health coverage
➢➢Almost 70% had coverage from an employer-sponsored plan
➢➢About 7% were covered by Medicaid or another public program
➢➢About 7% were covered by a student or other private plan.45

Notably, nearly 20% of college-enrolled students were uninsured. Estimates show


these uninsured students generated between $120 million and $255 million in
uncompensated care from physician and emergency room visits.46 Further, the
greatest proportion of uninsured was part-time students. A number of colleges do
not make their student health insurance available to students who are not enrolled
full-time. In the case of young adults living with CMCD, carrying a part-time class

15
What is it Like? load for health reasons could have an
educational impact, but it could also affect
The View from a Parent
health coverage.
In many ways a story of successful transition,
the parent of a 26-year-old from Maryland is Finally, the coverage offered by academic-
proud her son lives in his own apartment and
sponsored plans is not as generous as that
has held both part-time and full-time jobs. “I
wasn’t sure he was ready,” she says, but with offered by parent’s employer-sponsored
the help of state-sponsored independence coverage. The GAO found that 66%
services, they found an apartment near his of employer sponsored plans had a
parents’ house. But the complicated and
maximum lifetime benefit of $5 million,
often frustrating process of navigating the
various programs and help available to her and almost 100% had a maximum benefit
son has not been easy. of $2 million. However, the typical plan
Although eligible for Medicaid, her son was sponsored by an academic institution had
covered through her company plan for years a maximum lifetime benefit of $500,000.47
before he got a job that offered insurance. Young adults living with CMCD may not
Since Medicaid is the payer of last resort,
feel that a policy that limits total benefits to
she and her husband didn’t have to interact
with the government-sponsored coverage $500,000 will assure access to the health
until recently when their son lost his job. care services they may need.
Figuring out which providers take Medicaid,
what medications are covered and how to
transition her son from his pediatric dental
office has been a challenge. Additionally, a Difficulty finding/maintaining employer-
weekly visit to her son’s long-time therapist is sponsored insurance
not covered in full, so she and her husband
Some young adults with CMCD may not
have been covering the difference out-of-
pocket. be able to go to college and will instead
seek employment. Because of their health
Still, this mom is more concerned about
health issues in addition to her son’s chronic condition or disability and limited stamina,
medical condition. many can only work part-time. This
“Healthy living is a problem,” this concerned puts these young adults at risk of being
mother explains. “He has poor eating habits, uninsured because many employers do not
is overweight and pre-diabetic.” offer health insurance benefits to part-time
While her son does have a chronic medical employees. Additionally, based on the state
condition, it isn’t the medical problems that of the overall job market, young adults who
are the most difficult to manage. “He is a
could work full-time sometimes have no
typical young adult, which is a problem,
too.” choice but to take part-time work, or low
wage or temporary positions that do not
provide health benefits. Access to parents’
insurance can be limited as young people
who work part-time may not be eligible for
coverage under their parents’ insurance.
Nearly 60% of employers who offer
family health care coverage do not extend

16
coverage to dependent young adults over the age 18 or 19 if they are not students.48

To ease the transition to new insurance coverage options and ensure that an abrupt
cutoff of insurance benefits does not have negative effects on the health status of
young adults, many states have passed legislation that raises the age of dependency.
These laws allow a young adult to remain covered by their parent’s private health
insurance plan until they reach the new upper age limit. According to the National
Conference of State Legislatures, as of December 2008, 31 states had passed laws
raising the age to determine health insurance dependent status.49 While New Jersey
increased the age to 30, most states have increased the age to 24 or 25. With the
exception of four states, these new laws apply to both non-students and students.
However, the laws only apply to plans covered under state insurance regulations,
and do not apply to employers who are self-insured, which accounts for a large
portion of the insured.

Coordination
Care coordination is an essential component of case management, as many youth
and young adults with CMCD and their families must learn to manage multiple
health care services that are often provided across different settings. Proper care
coordination may help reduce the financial impact families incur due to medical
expenses and missed work. These financial burdens are outlined below in Figure 3.

Figure 3.

Financial Impact on Families


Youth with CMCD whose families...50 Percentage
Pay $1,000 or more out of pocket in medical expenses per 20%
year for the child
Experience financial problems 18%
Spend 11 or more hours per week providing or coordinating 10%
the child’s health care
Must cut back or stop working 24%

Achieving optimal care coordination should be an attainable goal, especially since


the efficiencies coordination produce could potentially translate into cost savings.
A groundbreaking study on the costs and outcomes associated with coordination of
care in physician offices published in Pediatrics in 2008 showed improvements in
the management and monitoring of patients with CMCD can generate significant

17
cost savings at the practice level and for the U.S. health care delivery system in
general. Using a measurement tool to assess the value of daily care coordination
activities performed by physicians, nurses and other practice personnel, researchers
found a number of care coordination activities prevented unnecessary service use.
Almost one-third of study participants indicated care coordination encounters
prevented a level of resource use beyond primary care. Of these, 84% led to
prevention of either an emergency department visit or an episodic, acute visit to the
office for the family.51
Besides the direct cost savings attributable to preventing emergency department
visits, care coordination can also reduce the amount of time missed from work or
school for youth with CMCD and their families. Employers might also experience
a benefit because care coordination can reduce the need for face-to-face physician
office visits, meaning employees could spend less time away from work.

Care Coordination Defined

The American Academy of Pediatrics (AAP) defines care coordination as:

…a process that links children and youth with special health care
needs and their families with appropriate services and resources in a
coordinated effort to achieve good health.52

In a physician office setting, care coordination requires managing multiple details,


including, but not limited to:
➢➢Assessing and identifying patient’s needs;
➢➢Being knowledgeable of existing medical and non-medical resources;
and
➢➢Monitoring and following up with patients closely and frequently.

All care coordination activities require some amount of time per patient in addition
to time spent on direct treatment. As might be imagined, the additional time
correlates closely with the patient’s level of medical complexity. Reimbursement
for services depends on whether or not the task was performed by a credentialed,
licensed health care provider or office personnel.53

18
The Medical Home

The concept of the medical home was originally introduced in 1967 by the
American Academy of Pediatrics (AAP) as a central location for archiving a child’s
medical record.54 The AAP expanded the concept of the medical home in 2002 to
“a model of delivering primary care that is accessible, continuous, comprehensive,
family-centered, coordinated, compassionate, and culturally effective care.”55
This sort of support is essential to the care and wellbeing of youth and young
adults living with CMCD and their families. In March 2007, the American College
of Physicians, American Academy of Family Physicians, American Osteopathic
Association and the AAP released a joint statement on the most critical principles
of the medical home. The following selected guiding principles emphasize
coordinated, high-quality care, and its value to patients, their families and the
health care system.56

Joint Principles of the Patient-Centered Medical Home


• Personal physician – each patient has an ongoing relationship with a personal
physician trained to provide first contact, continuous and comprehensive care.
• Physician directed medical practice – the personal physician leads a team of
individuals at the practice level who collectively take responsibility for the
ongoing care of patients.
• Whole person orientation – the personal physician is responsible for providing for all
the patient’s health care needs or taking responsibility for appropriately arranging care
with other qualified professionals. This includes care for all stages of life; acute care;
chronic care; preventive services; and end of life care.
• Care is coordinated and/or integrated across all elements of the complex health care
system (e.g., subspecialty care, hospitals, home health agencies, nursing homes) and
the patient’s community (e.g., family, public and private community-based services).
Care is facilitated by registries, information technology, health information exchange
and other means to assure that patients get the indicated care when and where they
need and want it in a culturally and linguistically appropriate manner.
• Enhanced access to care is available through systems such as open scheduling,
expanded hours and new options for communication between patients, their personal
physician, and practice staff.
• Payment appropriately recognizes the added value provided to patients who have a
patient-centered medical home.
Excerpted from: Joint Principles of the Patient-Centered Medical Home. March 2007.57

There is a consensus among health care policy experts and physicians that a team
approach to patient care will produce improvements in health outcomes and
significant cost savings. However, care coordination within the medical home
is difficult to achieve in an efficient manner. Currently, many models of care

19
What is it Like? coordination are being explored. Families
of youth and young adults with CMCD
The View from a Physician Specialist
recognize this difficulty, reporting in a study
A pediatric pulmonologist by training,
on families’ perceptions that although their
Dr. Greg Sawicki is a cystic fibrosis (CF)
specialist and helps run one of the country’s children’s health care professionals have the
preeminent CF centers, a combination necessary skills to provide for their children,
pediatric/adult facility with more than 500 care coordination often is not provided
patients.
through their primary care physician’s office.
“In the 1980’s, most patients diagnosed with
CF died in their late teens, or early 20’s,” Ideally, families seek a medical home that
explains Dr. Sawicki. “Now, many patients will:
are living into their 30’s, 40’s, and beyond.”
➢➢Develop a written summary of
This change in lifespan has required a
commensurate change in the practice of important information;
medicine and the coordination of care for
➢➢Develop a customized action
patients transitioning from childhood to
adulthood. Training providers differently and plan;
providing a patient appropriate treatment
➢➢Provide a collaborative, family-
atmosphere are but a few of the changes
practitioners and facilities must make to centered approach to care; and
better serve youth with CMCD.
➢➢Utilize a clear process for the
Helping patients understand why they are integration and coordination of
moving to adult care and changing the role
multiple services and provide
of parents in medical treatment decisions
are also important. “We do more now to care-coordination.58
empower the young adult when it comes to
their disease,” says Dr. Sawicki. “When we
first started to transition patients to adult care
some felt slighted, but now most see it as Reimbursement Issues for Care
fostering their growth.” Coordination Activities
“We are at a critical juncture, not only
Provider reimbursement for care
structurally, but also from a patient point-of-
view,” says Dr. Sawicki. Providing education coordination activities is a complex
to patients and their families to help issue. First, no standard definition of
overcome barriers to health and health care what constitutes care coordination in
is essential. “Young adulthood is typically
the physician office setting exists. Care
a time of high risk behavior. We know that
without solid self-management skills patients coordination activities must be precisely
do poorly long-term.” described in order to improve the level of
care coordination provided to families.
Care coordination includes planning for
personnel staffing, determining the cost of
care coordination activities with the goal
of reimbursement and assessment of the
outcomes of care coordination. Second,
the complexities of each patient’s care

20
management vary in degree. Reimbursement is a function of time and effort, and
more complex patients require more of both. When patients and their families have
complicating family or social problems, the amount of time practice personnel
spend doing care coordination activities for that patient increases. The time spent
by a physician, nurse, or other staffer translates into a direct cost to the practice.

Presently, physicians are allowed to bill for care coordination activities, or in


Current Procedural Terminology (CPT), “overseeing care plan development and
implementation”, that takes at least fifteen minutes. Since providers have the ability
to bill for these activities, it is critical to document the cost and outcomes of care
coordination so appropriate reimbursement and auditing strategies can be linked to CPT.

The study in Pediatrics by Antonelli, et al. provides a reference point for a valuation
of costs associated with care coordination. Several practices included in the study
have already used the data to negotiate with payers to obtain funding to support
care coordination. Physician-driven care coordination costs more than nurse-driven
care coordination. The average cost per care coordination encounter across the
individual practices varied from $4.39 to $12.86, with an overall mean of $7.78. The
cost was influenced by care coordination model type, with the principal cost driver
the percentage of activities performed by physicians. However, nurse-driven care
coordination seemingly prevents the majority of emergency department visits and
sick office visits, making it more cost effective. This relationship may have important
implications for how cost-effective care coordination should be reimbursed.
Currently, no payment mechanisms exist for care services of office nurses.59

Transition from Pediatric to Adult Medical Care


As discussed, adolescents face many challenges as they transition from pediatric
to adult oriented medicine. Some youth, for many different reasons, are never
able to make the health care transition to more self-sufficient adult medical care.
To address youth to adult oriented medical care and health care transition issues,
the federal Maternal and Child Health Bureau has made receipt of health care
transition services one of the six core performance outcomes for community-
based systems of care for youth with special health care needs. Services include
discussions with doctors and other health care providers to prepare for health care
transition to adult medicine, beginning in the early teenage years. However, despite
the efforts of the MCHB to increase the likelihood that adolescents are able to
successfully transition into adult medicine, outcomes are still poor.

The 2006 National Survey of Children with Special Health Care Needs indicated only
41% of youth met the health care transition core performance outcome which includes:

21
➢➢Reporting that the youth’s physician(s) talked about the eventual shift
to adult providers, about how health care needs change when reaching
adulthood, and about how health insurance coverage may change and
➢➢Reporting that the youth’s physician usually or always encourages the
young person to take responsibility for his or her care.60

The medical home is one logical place to initiate the process of transitioning to
adult care. Provided that a patient has sufficient cognitive ability and the nature of
the chronic health condition or disability does not interfere with the youth’s ability
to function independently, the primary care physician can begin by engaging the
patient in discussions about future life goals, what health related activities the
young person would like to be more involved in, and what the future medical
needs might be.

Adult oriented providers should also be


Navigator Defined willing to assist new, young adult patients
A competent professional trained to learn how to effectively address their
guide, assess, plan, and advocate on new roles and responsibilities in learning
behalf of individuals with disabilities how to take care of themselves, or self-
and chronic medical conditions,
their parents, families and other legal manage, as independent adults living
guardians through the complex health with CMCD.61
care system, including, but not limited
to, interacting and coordinating with However, no matter how well-prepared
health care providers, public and private
and supported by their physicians,
health care insurance providers as wellyoung adults with CMCD will need
as local, state, and federal benefits
programs to provide appropriate some assistance and support as they try
treatment, services and support in the to navigate the adult health care, health
community. insurance, and social services systems.
One promising approach is “system
navigation services.” These services
provide ongoing, hands-on guidance and assistance to individuals with CMCD and
their families to:
1) Define personal needs and priorities;
2) Identify all available programs, services and supports, such as insurance,
education, training, employment, housing, community supports, and
disability benefits;
3) Evaluate the relative value of various programs and supports;
4) Develop and implement a prioritized plan to apply for selected
programs;
5) Appeal and/or re-apply; and

22
6) Periodically re-evaluate personal needs and priorities to identify
necessary programs and services.

Health Care Transition Clinics

An emerging and promising practice, the creation of the health care transition
clinic, is a way to ensure adolescents make a successful adjustment to adult oriented
medicine. Existing transition clinics take an interdisciplinary approach to preparing
youth for adulthood management of their CMCD. Three clinics serve as models.

The Transition Clinic at Cincinnati Children’s Hospital Medical Center provides the
patient with access to social work, nursing, vocational/education counseling and
a physician trained in internal medicine and pediatrics. The Clinic serves young
adults, age 18-29, with a wide variety of developmental disorders.62

The Epilepsy Transition Clinic at Children’s National Medical Center in Washington,


D.C., opened in 2007 and is the first of its kind in the region. The Transition Clinic
provides continuity of care as patients with epilepsy transition to adult oriented
care. The clinic provides the resources of neurologists from Children’s National
Medical Center as well as Georgetown University Hospital whose experience
includes the treatment of childhood epilepsy.63

The University of North Carolina Kidney Center’s Successful Transition to Adulthood


with Prescriptions (STARx) treatment program was initiated in 2006.64 The program
provides adolescents and young adults with kidney disease ages 11 to 21 with three
tools they need to transition from pediatric to adult health care: the “medical passport”,
which helps a patient keep track of his/her diagnosis, medication and allergies; the
TRxANSITION Scale™, a health provider administered tool to diagnose and monitor
the process of transition; and the Transition-Readiness Survey™, an instrument designed
to measure patient-reported outcomes on health care transition.65

Access to Care for Young Adults with CMCD


Every year, 600,000 youth with CMCD reach adulthood.66 Gaining access to
appropriate health care services and having the ability to maintain an adequate
level of care is an important issue for youth and young adults living with CMCD.
However, many barriers prohibit this population from obtaining better health
outcomes and a health status reached by having continuous access to a usual
source of care. For many children, adolescents and young adults, basic and
advanced health care needs go unmet because they live in an underserved area or

23
lack health insurance coverage. It is critical to examine access issues to raise health
care quality and outcomes for youth and young adults with CMCD.

Navigating the health care transition from pediatric to adult oriented medicine can be
difficult for young adults with CMCD. As youngsters age out of Medicaid and SCHIP
programs in most states, they are frequently left without any health insurance, which
limits their health care access primarily to emergency departments when an acute
episode occurs and can be detrimental to their overall health status.

One of every four youth with CMCD reported being uninsured—consistent with
that of healthy young adults. While these youngsters have great incentive to
maintain health insurance coverage, for many reasons some cannot, and are at risk
for falling through the cracks in the health care delivery system. Table 2 shows that
most youth with CMCD are also significantly worse off than their healthier peers
in terms of education level attained and employment. All of these socioeconomic
characteristics are associated with lack of insurance and poor health care access.67

Table 2.

Characteristics of Young Adults With and Without Limitation68


Disabling Chronic
No Disability
Condition
Population estimate 1,900,000 38,500,000
Male 49% 50%
Hispanic 10% 16%
While, non-Hispanic 72% 65%
Black, non Hispanic 15% 13%
Other 3% 6%
Education attainment
<9th grade 4% 4%
9th-12th grade, no diploma 20% 11%
GED 5% 3%
High school graduate 30% 24%
Some college 41% 58%
Activity
Going to school 9% 8%
Working 45% 76%
Keeping house 6% 8%
Something else 39% 7%
Insurance Coverage
Uninsured 26% 28%
Private insurance 40% 65%
Medicaid 27% 5%
Other insurance 7% 2%

24
A study published in the Archives of Pediatric and Adolescent Medicine in 2006,
reported uninsured youth with CMCD are eight times more likely to report unmet
health care needs and have six times greater odds of having no usual source of
care relative to insured respondents with CMCD. Delayed care or unmet needs
for young people with CMCD may represent missed opportunities to improve
functioning or delay disease progression. Beyond being a critical component for
transitioning young adults, lacking a usual source of care has been associated with
poorer access to preventive services, longer hospitalizations, and increased use of
emergency departments.69

Lack of Specialty Care Providers

Young people with CMCD are also more likely to have unmet medical needs and
have problems accessing needed specialty care if they:
➢➢Are poor,
➢➢Are uninsured or underinsured, 70
➢➢Have multiple and/or changing health care needs, and
➢➢Live in an area that has an inadequate number of pediatric subspecialists. 71

Finding and getting an appointment with a physician who is specially trained to


care for adolescents and young adults who have certain types of chronic medical
conditions or disabilities is a serious and growing problem. For example, in a 2005
article on the pediatric subspecialty workforce, the authors conclude the U.S. does
not currently have enough pediatric anesthesiologists, radiologists, pulmonologists,
neurologists, rheumatologists, psychiatrists, or gastroenterologists to meet patient
needs.72 They also cite research indicating long wait-times to get an appointment
with certain types of pediatric specialists, for example:
➢➢Pulmonology 5 weeks
➢➢Gastroenterology 7 weeks
➢➢Endocrinology 9 weeks
➢➢Neurology 11 weeks
➢➢Child and adolescent psychiatry 3 months

High numbers of physicians are also leaving some of these subspecialties because
of stress and burnout, which could “adversely impact workforce supply and
constrain access to pediatric subspecialty services.”73

The problem of access is compounded by the tendency for specialists to practice in


more highly populated areas, and areas near a pediatric hospital, and/or university-

25
based medical center.74 To illustrate the problem, some states do not have any
pediatric subspecialists, including Alaska, Idaho, Montana, and Wyoming. None
of these states has practicing pediatric endocrinologists, for example. Vermont,
Montana, and Wyoming lack any pediatric gastroenterologists.75

North Carolina fares much better in comparison with nine full-time pediatric
nephrologists, or (about one per million population). However, all nine of
these nephrologists practice in the western part of North Carolina. Many adult
nephrologists will not provide care to children with kidney disease under age 12
unless consultation from a pediatric nephrologist is readily available. Further,
general pediatricians, who are not trained in the treatment of kidney disease, are
reluctant to see these children for the same reason. As a result, children with
kidney disease in the entire eastern portion of North Carolina must travel hundreds
of miles to a see physician. Further, only four dialysis centers in the state will treat
children under 18; therefore, to receive hemodialysis, some children and their
parents must travel two to four hours each way, three times a week.76

Young Adults Struggle to Find Needed Health Care

Most adult physicians have not been trained to care for adults who have childhood
onset medical conditions and disabilities. This is largely because, until recently,
children with serious chronic illnesses and disabilities died before they reached
adulthood. With advancements in medical care over the last 30 years, it is now
expected that more than 90% of children who have a chronic medical condition
or disability will reach adulthood. As a result, there is an ever growing number of
young adults with CMCD seeking care
from adult providers, but a very limited
Mini-case: number of adult providers who have
A 35-year-old with an intellectual experience in caring for young adults
disability with CMCD. In addition to specific
The transition issues of people living with medical training, competency training
CMCD do not stop when they become is also lacking. A recent report calls
young adults. In fact, some, especially
“the absence of professional training
those with developmental disabilities,
have continuous care needs. on disability competency issues for
health care practitioners...one of the
Having lived with his parents his whole
life this 35-year-old was unprepared for most significant barriers that prevent
their decline as they aged. When they people with disabilities from receiving
needed to enter a nursing home, not only appropriate and effective health care.”77
was he left without a place to live, he also
was without his family caregivers. Therefore, it is not surprising that many
young adults living with CMCD and

26
UNANSWERED QUESTIONS
This paper focuses on health care transition for youth and young adults living with
chronic medical conditions and disabilities. Many of those with childhood onset CMCD
are likely to become independent adults who have the ability to ultimately coordinate
and manage their own health care. However, some of these young adults, as mentioned
previously, will not become independent as they age.

A number of policy questions are as yet unanswered when it comes to effective health
care, especially for adults with developmental disabilities who need comprehensive
care services. For example,
➢➢How can this population gain access to independent advocacy?
➢➢Who is responsible for health outcomes, especially when appropriate
treatment and social service supports may not exist?
➢➢Where do we need to spend more money and where are there cost-savings
when it comes to providing and coordinating care?

Future policy research should examine ways to improve not just the medical care those
with CMCD receive, but also the more comprehensive service requirements of people
with CMCD whose needs are the most unique and complex to meet.

The mental health needs and issues for children and young adults with CMCD are
extremely serious. While beyond the scope of this white paper, it is essential to
understand the interplay of medical and mental health for this vulnerable population.

their parents report difficulty in finding adult primary and specialty care providers
whose knowledge of their condition matched their pediatric provider’s. Parents
and young adults cite disorganized and impersonal care as access barriers because
the young person was “used to certain levels of care which incorporated social
workers, nurses who understood your illness and had a much more psychosocial
approach to your illness. And then you get kind of tossed into the adult role, which
is very different. It is very much disease centered, quick and dirty.”78 Young adults
and family members also report that they did not want to “start all over again”
and educate the new adult provider about their medical condition. As this paper
shows, health care transition is a critical part of the health care needs of youth and
young adults living with CMCD. Healthy People 2010 has set a goal for all such
individuals to have a plan to guide their health care transition to adult medical
care, but studies show only 16% of youth have a transition plan.79 About 54% of
young adults with CMCD lack a usual source of care (i.e. a primary care provider)
and over two-thirds delay or miss needed care due to cost.80 Today, many struggle
to find adult-focused physicians to care for their childhood onset conditions.81,82
The problem is particularly onerous for youth and young adults with significant

27
disabilities. There is, in effect, no health system into which people with significant
disabilities can transfer to. This is especially true for people with cognitive and
mental health disabilities who are likely to need lifelong supports and services.
Experts estimate by 2025 there will be a 27% shortage in adult generalist physicians
in the U.S.83

Given the anticipated future shortage of primary care providers, it’s reasonable to
expect that this vulnerable population will have even greater difficulty accessing
needed primary care. In 2005, the Surgeon General issued a Call to Action to
Improve the Health and Wellness of Persons with Disabilities.84 The Call to Action
addressed the need to support and promote accessible health care that enables
people with disabilities to lead a full life while protecting, preserving and improving
their health. In addition to encouraging providers to treat whole individuals,
rather than just the disability, this report cites a need to educate physicians in
treating patients with disabilities so they may to be able to meet the needs of this
population, and train providers to engage with their patients with disabilities as
partners in care.

The Call to Action strongly advocates increased physician training in treating


patients with disabilities because this population has reported that when they find
a physician or other provider willing to engage them as a partner in care, they must
spend a substantial amount of time educating the provider about their disability
and other health concerns. A survey conducted by the Kaiser Family Foundation in
2003 reported that among people younger than 65 years of age with a disability,
25% reported having difficulties finding a doctor who they feel understands their
disability.85

The result of physician inexperience in treating patients with disabilities can be


limited, incomplete or misdirected access to prevention, screening, diagnosis, and
treatment services for both disability and non-disability related health care. Thus,
there is a strong need for physicians and other providers to receive ongoing training
and education on a discipline-by-discipline basis about the challenges of treating
patients with disabilities and the up-to-date best practices in health care.86

28
Recommendations
for Health Care Reform

Health care transition, coordination and access to care for youth and young
adults living with CMCD are an important component of overall health care
reform. Several possible strategies to address the concerns mentioned in this paper
might be considered. First and foremost, additional research is needed to better
understand the youth and young adult CMCD populations and how improved care
coordination could save money and enhance patient outcomes.

Youth health care transitions to adult health care would be improved by:

Changes in insurance rules such as:


➢➢Extending the upper age limit for adult children to be on their parent’s
family employment-based health insurance policy to age 30
➢➢Allowing individuals with CMCD whose level of functioning exceeds SSI
disability criteria to buy into Medicaid
➢➢Permitting young adults with CMCD to maintain college-sponsored
health insurance even if they are enrolled part-time, and/or have access
to family-sponsored insurance

Changes in reimbursement such as:


➢➢Providing payment for non-patient encounter activities such as care
coordination and health care transition planning activities
➢➢Paying pediatric providers to write a thorough medical summary that
includes recommendations for preventive care and screenings for use by
adult primary and specialty care providers
➢➢Allowing reimbursement to both a pediatric and an adult provider to see
the same young adult patient for the same problem (as in a health care
transition clinic)
➢➢Allowing reimbursement to both a pediatric and an adult provider to co-
manage the care of the same young adult patient for a two year period
(co-management for a year before and a year after transfer from pediatric
to adult care)
➢➢Increase reimbursement of adult providers for extended visits with young
adults patients with CMCD by allowing “up-coding” of primary care and

29
specialty care visits – to encourage these providers to spend more time
and more fully address the problems/issues presented by young adult
patients
➢➢Reimbursement for patient education of youth and young adults with
CMCD for a specific period of time (e.g., the year before and year after
transfer). Patient education would focus on knowledge and skills related
to self management and self determination, making appointments, filling
prescriptions, communicating with physicians and other health care
providers, etc.
➢➢Reimbursement for patient navigation services and supports, which
would guide and support individuals and their families to identify,
prioritize, apply for, and reassess the value of health, education, social
services, independent living and related programs and services

Changes to the medical workforce such as:


➢➢Training health care providers in coordination and health care transition
planning
➢➢Supplementing training for adult providers, including interdisciplinary
training and training in management of young adult patients with CMCD
➢➢Providing incentives for medical students to pursue pediatric
subspecialties, adolescent medicine, med/peds and adult specialties
related to developmental medicine

Implementation of Data Collection and Analytic Activities

Develop and implement an ongoing initiative that will collect and analyze data that
specifically focuses on health care access and outcomes of youth and young adults
with CMCD. More specifically, this activity would provide information that would
allow for a better understanding of the health care utilization patterns of youth and
young adults with CMCD and how improved care coordination, care management
and health care transition services and supports could both save money and
enhance patient outcomes.

Streamlining and Simplifying Public Programs

Create a Federal Interagency Coordinating Council for Young Adults with Chronic
Medical Conditions and Disabilities (FICC/YA-CMCD), possibly under Title V of the
Social Security Act. The purpose of the council would be to:

30
➢➢Minimize duplication across federal, state, and local agencies of
programs and activities relating to health insurance, health care, health
care transition, education, vocational training, housing, transportation,
independent living, social supports, and guardianship for young adults
ages 18 to 30 with CMCD;
➢➢Ensure effective coordination of federal programs, including federal
technical assistance and support activities; and
➢➢Identify gaps in federal agency programs and services and barriers to
federal interagency cooperation.

To meet these purposes, the FICC/YA-CMCD would seek to:


➢➢Identify areas of conflict, overlap, and omissions in interagency policies
related to the provision of services to young adults living with CMCD;
➢➢Develop and implement joint policy interpretations on issues related
to young adults living with CMCD that cut across federal agencies,
including modifications of regulations to eliminate barriers to interagency
programs and activities; and
➢➢Coordinate the provision of technical assistance and dissemination of
best practice information.

“...the future of disability in America will depend on how this country


prepares for and manages a complex array of demographic, fiscal, medical,
technological, and other developments that will unfold in the next several
decades. Much can be done now to make this future one that enables people
with disabilities to lead full and productive lives. Inaction will lead to individual
and societal costs—avoidable dependency, diminished quality of life, increased
stress on individuals and families, and lost productivity.”
The Future of Disability, Institute of Medicine, 2007

31
Conclusion

More than half a million young people with chronic medical conditions or diseases
become adults every year. The need for appropriate, coordinated, high quality
care will only increase. As the nation grapples with how to reform the health care
system, focusing on those people who need care the most is an excellent place to
start. As this paper and many studies make clear, “the most effective way to address
chronic disease—with the aims of reducing disease burden, improving quality
of life, and cutting costs—is through the implementation and action of multi-
disciplinary teams.”87

While much of the health reform debate is focused on ideas such as creating a
public plan, forming insurance exchanges, and mandating coverage, two additional
core concepts appear in proposals offered by those on both sides of the aisle:
1. Prioritizing care for the chronically ill
2. Improving coordination of care

Many of the proposals in Washington to reform the health care system would
significantly enhance treatment, coordination and transition initiatives for this
population, including:
➢➢Paying physicians for coordinating care and health care transition
planning
➢➢Improving health outcomes by using a medical home model that
incorporates health care transition
➢➢Improving health outcomes through the use of activities such as:
• Quality reporting
• Effective case management
• Care coordination
• Chronic disease management
• Medication and care compliance initiatives
➢➢Supporting health care transition needs from adolescence to adulthood
➢➢Encouraging innovative approaches to clinical teaching using models
of primary care, such as the patient centered medical home, team
management of chronic disease, and interprofessional integrated models
of health care that incorporate transitions in health care settings and
integration of physical and mental health

32
➢➢Collaborating with local primary care providers and existing state and
community based resources to coordinate disease prevention, chronic
disease management, transitioning between health care providers and
settings and case management for patients, including children and young
adults

The advantages of coordinated care when it comes to health care and the
avoidance of costs are well-known. Research has proven “strong primary care
medical homes are less likely to hospitalize children with common chronic
conditions and that strong chronic-condition management and care coordination
reduce both hospitalizations and emergency department visits.”88

Health care transition planning and coordinated care for youth and young adults
with CMCD, just as significantly as cost reduction, will improve socioeconomic
well-being for these individuals with chronic conditions and disabilities, and for
all of us. When it comes to reform, starting with chronic care is the right thing to
do, especially when it comes to the present and long-term future of our youth and
young adults.

33
Endnotes
1
Hartman M, Martin A, McDonnell P, Catlin A. National Health Spending In 2007: Slower Drug
Spending Contributes To Lowest Rate Of Overall Growth Since 1998. Health Affairs. 2009;28(1):
246-261
2
Bodenheimer T, Chen E and Bennett H. Confronting the Growing Burden of Chronic Disease: Can
the U.S. Health Care Workforce Do the Job? Health Affairs. 2009;28(1):64-74
3
Child and Adolescent Health Measurement Initiative. Who are Children with Special Health Care
Needs? Data Resource Center for Child and Adolescent Health. Available online at http://nschdata.
org/viewdocument.aspx?item=256
4
Perrin JM, Bloom SR, Gortmaker SL. The Increase of Childhood Chronic Conditions in the United
States. JAMA. 2007;297(24):2755-9
5
U.S. Department of Health and Human Services, Health Resources and Services Administration,
Maternal and Child Health Bureau. The National Survey of Children with Special Health Care
Needs Chartbook. 2005–2006. Rockville, Maryland: U.S. Department of Health and Human
Services, 2008.
6
U.S. Census Bureau; Census 2000, Summary File 1. QT-P1. Age Groups and Sex: 2000; using
American Fact Finder. Available online at http://factfinder.census.gov
7
Callahan TS, Cooper W. Access to Health Care for Young Adults With Disabling Chronic
Conditions. Archives of Pediatric and Adolescent Medicine. 2006;160(2):178-82. Available online
at http://archpedi.ama-assn.org/cgi/content/full/160/2/178
8
National Survey, op. cit.
9
Anderson G, Horvath J. The Growing Burden of Chronic Disease in America. Public Health
Reports. 2004;119(3):263-70. Available online at http://www.publichealthreports.org/
userfiles/119_3/119263.pdf
10
Damiano, PC, Momany, ET, Tyler, MC Penziner AJ, Lobas JG. Cost of Outpatient Medical Care
for Children and Youth With Special Health Care Needs: Investigating the Impact of the Medical
Home. Pediatrics. 2006;118(4):e1187-e1194
11
U.S. Government Accounting Office. Children with Disabilities: Medicaid Can Offer Important
Benefits and Services. GAO/T-HEHS-00-152. July 2000.
12
Institute of Medicine, Board on Health Sciences Policy, Committee on Disability in America. The
Future of Disability in America. Washington, DC: National Academy Press, 2007. Available online
at http://www.nap.edu/catalog.php?record_id=11898
13
Williams, RG. Fumbling the Handoff: Managing the Transition to Adult Care for Adolescents with
Chronic Conditions. Journal of Adolescent Health. 2009;44(4):307–308
14
McPherson M, Arango P, Fox H, Lauver C, McManus M, Newacheck P, Perrin J, Shonkoff
J, Strickland B. A new definition of children with special health care needs. Pediatrics.
1998;102(1):137–140
15
National Survey, op. cit.
16
Katon WJ, Richardson L, Russo J, Lozano P, McCauley E.  Quality of Mental Health Care for Youth
with Asthma and Comorbid Anxiety and Depression. Med Care. 2006;44(12):1064-72
17
Kanner AM. Depression in Epilepsy: Prevalence, Clinical Semiology, Pathogenic Mechanisms, and
Treatment. Biol Psychiatry. 2003;54(3):388-98
18
The Future of Disability, op. cit.
19
National Survey, op. cit.
20
Odom SL, et al. (Eds.) Handbook of Developmental Disabilities. New York: The Guilford Press,
2007.
21
Ibid.

34
22
Boulet SL, et al. Health Care Use and Health and Functional Impact of Developmental Disabilities
Among US Children, 1997-2005. Arch Pediatr Adolesc Med. 2009;163(1):19-26
23
Ibid.
24
Newacheck P, McManus M, Fox H, Hung Y, Halfon N. Access to health care for children with
special health care needs. Pediatrics. 2000;105(4):760-769
25
Access to Health Care for Young Adults, op. cit.
26
National Maternal and Child Oral Health Resource Center. Georgetown University. Oral Health for
Children and Adolescents with Special Health Care Needs: Challenges and Opportunities. 2005.
Available online at http://www.mchoralhealth.org/materials/CSHCN.html
27
The Future of Disability, op. cit.
28
United States Department of Education. Office of Special Education Programs. Building the Legacy:
IDEA 2004. Topic Brief: Secondary Transition. February 2007. Available online at http://idea.ed.gov/
explore/view/p/%2Croot%2Cdynamic%2CTopicalBrief%2C17%2C.
29
A Consensus Statement on Health Care Transitions, op. cit.
30
National Center on Secondary Education and Transition. Self-Determination for Middle and High
School Students. December 2007. Available online at http://www.ncset.org/topics/sdmhs/default.
asp?topic=30
31
Blum R. Introduction. Pediatrics. 2002;110(6 Pt 2):1301-1303
32
A Consensus Statement on Health Care Transitions, op. cit.
33
Ryan R, Patrick H, Deci E, Williams G. Facilitating health behaviour change and its maintenance:
Interventions based on Self-Determination Theory. The European Health Psychologist.
2008;10: 2-6. Available online at http://www.psych.rochester.edu/SDT/documents/2008_
RyanPatrickDeciWilliams_EHP.pdf
34
Reiss J, Gibson R, Walker L. Health Care Transition: Youth, Family, and Provider Perspectives.
Pediatrics 2005;115(1):112-20. Available online at http://www.pediatrics.org/cgi/content/
full/115/1/112
35
DeNavas-Walt, C, Proctor, B, Smith, J. U.S. Census Bureau. Current Population Reports, P60-235,
Income, Poverty, and Health Insurance Coverage in the United States: 2007, U.S. Government
Printing Office, Washington, DC, 2008. Available online at http://www.census.gov/prod/2008pubs/
p60-235.pdf
36
Nicholson J, Collins S, Mahato B, Gould E, Schoen C, Rustgi S. Rite of Passage? Why Young Adults
Become Uninsured and How New Policies Can Help, 2009 Update. The Commonwealth Fund,
August 2009. Available online at http://www.commonwealthfund.org/~/media/Files/Publications/
Issue%20Brief/2009/Aug/1310_Nicholson_rite_of_passage_2009.pdf
37
U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services.
Annual EPSDT Report Form CMS-416 (National) Fiscal Year: 2007. Baltimore, Maryland: U.S.
Department of Health and Human Services, 2008. Available online at http://www.cms.hhs.gov/
MedicaidEarlyPeriodicScrn/03_StateAgencyResponsibilities.asp.
38
Williams B, Tolbert J. Aging Out of EPSDT: Issues for Young Adults with Disabilities. Kaiser
Commission on Medicaid and the Uninsured, January 2007. Available online at http://www.kff.org/
medicaid/upload/7491.pdf
39
Kaiser Family Foundation. Kaiser Commission on Medicaid and the Uninsured. Early and Periodic
Screening, Diagnostic, and Treatment Services. October 2005. Available online at http://www.kff.
org/medicaid/upload/Early-and-Periodic-Screening-Diagnostic-and-Treatment-Services-Fact-Sheet.
pdf
40
Ibid.

35
41
U.S. Department of Health and Human Services. Maternal and Child Health Bureau, Health
Resources and Services Administration. National Oral Health Policy Center. EPSDT Periodicity
Schedules and their Relation to Pediatric Oral Health Standards in Head Start and Early Head Start.
Rockville, Maryland: U.S. Department of Health and Human Services, June 2005. Available online
at http://www.healthychild.ucla.edu/nohpc/National%20Oral%20Health%20Policy%20Center/
OralCenterPubs/EPSDT%20Periodicity%20Schedule%20Brief%20-%20Final.pdf.
42
Peters C. EPSDT: Medicaid’s Critical But Controversial Benefits Program for Children, Issue Brief –
No. 819. National Health Policy Forum. November 20, 2006. Available online at http://www.nhpf.
org/library/issue-briefs/IB819_EPSDT_11-20-06.pdf.
43
U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services.
Center for Medicaid and State Operations. Medicaid At-a-Glance 2005. Baltimore, Maryland: U.S.
Department of Health and Human Services, 2005. Available online at http://www.cms.hhs.gov/
MedicaidDataSourcesGenInfo/downloads/maag2005.pdf
44
Yu H, Dick AW, Szilagyi PG. Does public insurance provide better financial protection against
rising health care costs for families of children with special health care needs? Med Care.
2008;46(10):1064-70
45
U.S. Government Accounting Office. Most College Students Are Covered through Employer-
Sponsored Plans, and Some Colleges and States Are Taking Steps to Increase Coverage. GAO-08-
389. March 2008.
46
Ibid.
47
Ibid
48
Collins S. Young and Vulnerable: The Growing Problem of Uninsured Young Adults and How New
Policies Can Help, Hearing on “Health Insurance Options for Young Adults,” Invited Testimony,
New York City Council, Committee on Health, April 23, 2009. Available online at http://www.
commonwealthfund.org/Content/Publications/Testimonies/2009/Apr/Testimony-Young-and-
Vulnerable.aspx#citation
49
See National Conference of State Legislatures, http://www.ncsl.org/programs/health/
dependentstatus.htm
50
National Survey, op. cit.
51
Antonelli R, Stille C, Antonelli D. Care Coordination for Children and Youth with Special Health
Care Needs: A Descriptive, Multisite Study of Activities, Personnel Costs, and Outcomes. Pediatrics.
2008;122(1):e209-16. Available online at http://www.pediatrics.org/cgi/content/full/122/1/e209
52
Ibid.
53
Ibid.
54
American Academy of Family Physicians, American Academy of Pediatrics, American College of
Physicians, American Osteopathic Association. Joint Principles of the Patient-Centered Medical
Home. March 2007. Available online at http://www.medicalhomeinfo.org/
55
The National Center of Medical Home Initiatives for Children with Special Needs. What is a
medical home? July 2009. Available online at http://www.medicalhomeinfo.org/.
56
Ibid.
57
Joint Principles, op. cit.
58
McAllister J, Presler E, Cooley W. Practice-Based Care Coordination: A Medical Home Essential.
Pediatrics 2007;120(3):e723-33. Available online at http://www.pediatrics.org/cgi/content/
full/120/3/e723
59
Care Coordination for Children and Youth with Special Health Care Needs, op. cit.
60
Lotstein D, Ghandour R, et al. Planning for Health Care Transitions: Results From the 2005-2006
National Survey of Children With Special Health Care Needs. Pediatrics. 2009;123(1):e145-52.
Available online at http://www.pediatrics.org/cgi/content/full/123/1/e145
61
Health Care Transition, op. cit.
62
Cincinnati Children’s Hospital Medical Center. Clinical Programs and Services. July 2009. Available
online at http://www.cincinnatichildrens.org/svc/alpha/d/disabilities/clinical/transition.htm

36
63
Children’s National Medical Center. Departments & Programs. July 2008. Available online at
https://www.childrensnational.org/DepartmentsandPrograms/default.aspx?Type=Program&Id=6177
&Name=Epilepsy%20Transition%20Clinic/Adult%20Continuity%20Program
64
Ferris ME, Mahan JD. Chronic Kidney Disease and the Process of Health Care Transition. Seminars
in Nephrology. 2009;29(4):435-44
65
University of North Carolina Kidney Center. Smooth Transition to Adulthood with Renal Disease
(STARx). July 2009. Available online at http://unckidneycenter.org/hcprofessionals/transition.html
66
University of Florida Health Sciences Center. Culture Clash: Kids With Chronic Illness Face
Difficult Transition To Adult Care. Science Daily. March 2, 2005. Available online at http://www.
sciencedaily.com/releases/2005/02/050224124046.htm
67
Access to Health Care for Young Adults, op.cit.
68
Ibid.
69
Ibid.
70
Warfield M, Gulley S. Unmet Need and Problems Accessing Specialty Medical and Related
Services Among Children with Special Health Care Needs. Maternal and Child Health Journal.
2006;10(2):201-16
71
Mayer ML, et al. Unmet Need for Routine and Specialty Care: Data From the National Survey of
Children With Special Health Care Needs. Pediatrics. 2004;113(2):e109-15. Available online at
http://www.pediatrics.org/cgi/content/full/113/2/e109.
72
Jewett EA, Anderson MR and Gilchrist GS. The Pediatric Subspecialty Workforce: Public Policy and
Forces for Change. Pediatrics. 2005;116(5):1192-202. Available online at http://www.pediatrics.
org/cgi/content/full/116/5/1192.
73
Ibid.
74
Access to Health Care, op. cit.
75
National Association of Children’s Hospitals. Address the Pediatric Workforce Shortage in
Health Reform. Issue Brief. Available online at: http://www.childrenshospitals.net/AM/Template.
cfm?Section=Home3&TEMPLATE=/CM/ContentDisplay.cfm&CONTENTID=46721
76
Ferris M, et al. Pediatric Chronic Kidney Disease in the State of North Carolina. North Carolina
Medical Journal. 2008;69(3):208-14
77
The National Council on Disability. The Current State of Health Care for People with Disabilities.
September 30, 2009. Available online at http://www.ncd.gov/newsroom/publications/2009/pdf/
HealthCare.pdf
78
Health Care Transition: Youth, Family, and Provider Perspectives, op. cit.
79
Scal P, Ireland M. Addressing Transition to Adult Health Care for Adolescents with Special Health
Care Needs. Pediatrics. 2005;115(6):1607-12
80
Access to Health Care, op. cit.
81
Reiss J, Gibson R. Health Care Transition: Destinations Unknown. Pediatrics. 2002;110(6 Pt
2):1307-14. Available online at http://pediatrics.aappublications.org/cgi/content/full/110/6/S1/1307
82
Health Care Transition: Youth, Family, and Provider Perspectives, op. cit.
83
Confronting the Growing Burden, op.cit.
84
U.S. Department of Health and Human Services. The Surgeon General’s Call To Action To Improve
the Health and Wellness of Persons with Disabilities. Rockville, MD. US Department of Health
and Human Services, Office of the Surgeon General, 2005. Available online at http://www.
surgeongeneral.gov/library/disabilities/
85
Ibid.
86
Ibid.
87
Confronting the Growing Burden, op. cit.
88
Cooley WC, McAllister JW, Sherrieb K, Kuhlthau K. Improved outcomes associated with medical
home implementation in pediatric primary care. Pediatrics. 2009;124(1):358-64

37
This white paper is a product of the Coalition for Young Adults Living with Chronic
Medical Conditions and Disabilities (CMCD).

Individual and organizational members are committed to enhancing awareness,


education, research, training and reform efforts related to quality health care for
youth and young adults living with CMCD.

We thank the following member organizations for contributing to the development


of this white paper:

Allergy & Asthma Network/Mothers of Asthmatics


American Academy of Developmental Medicine and Dentistry
Association of University Centers on Disabilities
Autism Society
Genetic Alliance  
National Down Syndrome Society
Physician-Parent Caregivers
Renal Support Network
Special Olympics
University of North Carolina Kidney Center Transition Clinic

If you or your organization would like more information or would like to join the
Coalition in its efforts to assure a healthier future for youth and young adults living
with CMCD, please contact Physician-Parent Caregivers at:

By E-Mail

info@ppc-inc.org

By Mail

PPC
PHYSICIAN-PARENT CAREGIVERS, INC.
9700 Great Seneca Highway, Suite 258
Rockville, Maryland 20850

Electronic copies of this paper are available at http://www.ppc-inc.org

Special thanks to M2 Healthcare Consulting for preparing this paper on behalf of


the Coalition.

38
Coalition for Young Adults Living with Chronic Medical Conditions and Disabilities (CMCD).
For more information visit http://www.ppc-inc.org.