Surgeon General's Conference

Growing Up and Getting Medical Care:
Youth with Special Health Care Needs

A Summary of Conference Proceedings


   Surgeon General's Conference
Growing Up and Getting Medical Care:
Youth with Special Health Care Needs

A Summary of Conference Proceedings

PreparedandEditedby:

Phyllis FL Magrab, Ph.D.
Conference Chairpexson

Hilary E.C. Millar, M.D.
     consultant Editor

               Funded by
The Bureau of Maternal and Child Health
      and Resources Development

Jekyll Island, Georgia
  March 13-15,1989

National Center for Networking Community Based Services
    Georgetown University Child Development Center


Proceedings from the Surgeon General's Conference
         March 13-15, 1989

Growing Up and Getting Medical Care
Youth With Special Health Care Needs

Index

Executive Summary

Surgeon General's Introductory Remarks
C. Everett Koop, M.D.

Background Issue Brief
Suzanne M. Bronheim, Ph.D.

Section    Overview and Scope of Problem

       Learning To Be An Adult Patient
       Margaret Stineman, M.D.

Obstacles To Transition Prom Pediatric to Adult Health Care Systems
Daniel V. Schidlow, M.D.

Adolescents and Young Adults With Special Health Care Needs:
The Challenge for Financing
Peggy McManus

Preparation of Staff for Adolescent Transition
Hilary Millar, M.D.

Section II

A Case History
Discussion and responses from:
Merle McPherson, M.D., Kenneth W. Whittington, M.D., Athur B. Elster, M.D.

Section III    Successful Models:

Transitioning of Patients from Pediatric to Adult Care
Stanley Fiel, M.D.

The Hemophilia Model
Louis Aledort, M.D.

Young People with Rheumatoid Arthritis
Patience White, M.D.

Issues of Adolescent Transition in the Netherlands
Wietse Kuis, M.D.

Gerben Sinnema, Ph.D.

Section IV

Summary of Suggestions for Conference Action

Surgeon General's Concluding Remarks
C. Everett Koop, M.D.

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List of Participants


Executive Summary

   The national agenda for children and adolescents with special health care needs is
committed to improving services, preparing and training health care workers in the field, and
encouraging appropriate research. This agenda includes the issue of young people moving from
pediatric services to adult health care. This period of transition can be an anxiety provoking time
for adolescents, their families, and for those who work on their behalf, and further efforts must be
made to bridge this potential gap in services.

   In order to address this important health care concern, the Surgeon General convened a
small invitational conference "Growing Up and Getting Medical Care: Youth with Special Health
Care Needs" on March 13-15, 1989 at the Jekyll Island Club, Jekyll Island, Georgia. The ground
work for this meeting had been laid at a previous conference: "Youth with Disability: The
Transition Years," which was held in Minnesota in 1984. The focus of this earlier meeting was
mainly to define the problem in broad terms and to identify the challenges for adolescents with
special needs as they move onto the adult service system. At Jekyll Island, the Surgeon General
hoped to see the development of specific strategies and action steps related to medical care.
   It is agreed that during this period of transition, there is likely to be a hiatus in the
provision and utilization of appropriate care.  The young adult, the family, and health care
providers are all affected by this change.
       .   The&& himself may have had little warning or preparation for leaving
      the familiar health environment he has grown to trust and depend upon, and now
      he must find his way to a new clinical setting where he is expected to behave
      independently and where the personal touch may appear to be missing. Even when
       there is intellectual recognition that an adult patient's role is now more appropriate
      when receiving health care, it is often hard to move ahead in a positive frame of
         mind.
       .   Parents and other family members may feel threatened by approaching changes in
       the pattern of care, and resent the effort required to adjust to a new setting and
      different staff. They have weathered many crises and vital decision making with
      the support of the Pediatric team, and have come to regard this strong source of
       advocacy as a permanent arrangement.  In contrast, they may perceive the
      internist as less involved and perhaps insensitive to the subtleties associated with
         these chronic medical conditions.
       .       care nrovrderS also may feel uncomfortable during the period of change.
      The pediatrician has seen the survival of the child with a handicap which has been
      a professional and personal achievement; it is therefore frustrating to relinquish
      such a patient to others who provide a service which may have a somewhat different
       focus and broader goals. The internist accepts the patient who has already been
      diagnosed and treated. Whatever he says or does will inevitably be compared with
      what has previously transpired in the child centered setting. As a rule, he does not
       have the back up of an interdisciplinary team. The medical condition may be one
       with which he has had little or no experience. To build a productive relationship
      under these circumstances could seem an unreasonable challenge. The care of
      adults in many settings tends to focus on the medical problem; whereas,
       pediatricians have learned to attempt a more holistic approach.
   Issues in transition that must be addressed include the provision of services, financing of
care, training of staff, and research.
                  . .
       .       rovisron of servrces - various methods have been tried to assure a smooth
      transition; these models appear to have been successful, and point the way to
      building on existing resources in any given situation.
       .   Financing of care - having determined that responsive health services are
      available, the most pressing issue in transition must be the financial capability to
      pay for this care. The young person who reaches the age of legal independence, but

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      has a pre-existing condition, may find he is virtually uninsurable. Whether he is
      in full time education, employed, or at home, the procurement of adequate financial
      coverage is a major barrier to obtaining comprehensive health care.
                . .
      .    ralw of st& - those responsible before, during, and after transition need an
      orientation to the developmental characteristics of young people who are attempting
      to make this adjustment.  Knowledge of some of the less common medical
       conditions should be made more available.  The importance of a positive
      relationship between patients, their families, and care providers must be stressed.
      Understanding and assessment of the emotional, economic, and social needs of
      families should be developed in tandem with the monitoring of the long term
        medical condition.
      .   Research - there is a lack of precise information about landmarks in development
      which have a bearing upon the optimal timing for transition. The significance of
      the impact of various chronic medical conditions upon psychosocial development is
      unclear. Demographic data have been collected, but analysis Which would give the
      information practical value has yet to be performed.
   As a result of this conference, a number of action steps will be planned and implemented.
      o   Conference participants will make their respective professional groups more
       aware of the importance of transition. This will be achieved through contact with
      professional organizations, newsletters, and presentation of papers.
      .   Support groups who are already known to many families will be encouraged to
       work with official agencies on the health aspects of transition.
      .   Generic guidelines will be developed which will recommend the scope for both
      individual and programmatic components of health care. These guidelines should
      provide a basis for assessment of an individual's readiness for transfer.
      Available options for the financing of needed services are to be a major inclusion.
      .   A financing coalition will be developed with representatives from several national
       agencies and organizations. These experts will be selected because of their interest
      and experience with the predicament with which disabled adolescents are
      frequently faced. The group will concentrate upon exploring funding initiatives
      for transition and beyond, in keeping with emerging fiscal structures. Access to
      financial support and a standard benefit design will be pivotal points in these
        deliberations.
      .   Strengthening of family empowerment teaching resources will be made available
      through support groups, voluntary organizations, and official agencies.
      .   Training efforts will be encouraged to broaden the horizon of staff in both pediatric
      and adult settings about the significance of transition and health care beyond this
       point.
      .   Universities will be encouraged to analyze existing data relative to transition
         issues.  Information will be sought about the measurement of functional
      disabilities, the definition of disability in a socio-economic context, the effect of a
       disability on development, and other topics related to transition.
   An adolescent may have any one of a great number of primary disabling conditions;
however, there are wide areas of common needs which are shared by all regardless of the nature of
their illness. These shared needs often relate to developmental delays ,which require special
support at the time of transition, and about which too little is known.
   The recognition of common needs has implications for staffing patterns, especially for
those who provide counseling for psychosocial and family issues. The whole community of
professionals must become increasingly aware that they may need to modify their attitudes
around the process of transition, and build new skills into their repertoire in order to respond to
both individuals and categorical groups of patients.

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     In~uctory Remarks
          hY
     C. Evemtt Koop, MD.
      Surgeon General
    U.S. Public Health service
Department ofHealth andHuman Services

   As I end my career as Surgeon General and look back on my accomplishments, I share
with you an enormous sense of satisfaction in what we have achieved for children with special
health care needs and their families.

   We have established a national agenda for these children and their families which is to:
      .   Pledge a national commitment to all children with special health
        care needs and their families.
      .    Encourage building community-based service systems.
      .   Assist in ensuring adequate preparation of the professionals who
       provide care.
      .    Develop coalitions to improve the delivery of services.
      .    Establish guidelines to control costs of services.
      .    Encourage and support the development of adequate health care
       financing.
      .    Continue to conduct research and disseminate information.
   This agenda is moving forward as evidenced by the more than 1,200 participants from
medicine, health, education, social service fields, and families who joined us at the September
1988 Surgeon General's Conference in Washington, D.C. to share the progress we had made.
   Before I leave my position, I would like to recall one major issue in the care of special
children which has not been adequately addressed and which is a significant barrier to our
adolescent and young adult population as they pursue independence. I refer to the obstacles they
encounter and must surmount if the provision and quality of medical care is to continue from
childhood through transition to adulthood.

   I have invited you as leaders in the major organizations and professions which provide
these services to help us solve that problem.

   This Surgeon General's Workshop, which will probably be my last, is a personal effort to
close the loop on the conference some of us had in June, 1984 at Wayzata, Minnesota -- A
"Conference on Youth With Disabilities: The Transition Years." There, I was a speaker who
asked "who are the disabled among us." I left the question unanswered but implied that some
members of society were more handicapped than those we call disabled -- handicapped by attitude,
prejudice and tunnel vision.

   Today, I am your keynote speaker and in a sense, your host. It is necessary and
potentially profitable, to hold this workshop to determine methods for improving the transition of
disabled youngsters from Pediatric care to physicians in Adult Medicine and associated
specialities.
   What has been achieved already?
       .    There are programs that work and about them you will hear more.
       .   The issue of transition is being addressed by a number of regional and national
      programs, models, and networking services which will teach us how better to
       encourage adolescents to develop their full potential.
       .   There are societies and associations that foster the exchange of information among
       those of like mind, such as the Society for Adolescent Medicine.
       .    There are some states that have coordinators for adolescent health programs.
       .   And some states have training and employment models.
What is wrong with available transition services and concepts`?
       .    Some physicians for adults and their associates have not yet acquired
      the medical expertise for working effectively with rare medical conditions which

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   can affect the young adult population.
.   Pediatric professionals may have become overprotective of their patients which
   tends to inhibit the development of independence for the patient.
.   The patient may receive a negative message of survival if he stays in pediatrics
   indefinitely.

   I personally spent much of my professional life making sure that children with surgical
problems continued to receive good comprehensive care in an adult world. We know that some
physicians for adults and their associates have limited experience in caring for older children
and adolescents and they must be given every opportunity to fill this gap in knowledge and skills.
   We are not asking you to consider a series of problems with easy solutions. Our concerns
are not amenable to a quick fix.

   A basic underlying defect in the system has to do with the lack of a transition protocol for
healthy adolescents from pediatric care to adult services. Part of that is because the population in
general has its healthiest years in the decade after adolescence.  Even individuals under the care
of a family practitioner have little reason to seek his help and when an acute illness requires
medical attention, it is likely that consultation will be with a different and unknown physician.
How much more difficult for the youngsters with special needs when his/her acute illness
demands entry to the adult system.

   Some of the barriers to a successful transition of children with special health care needs
have already been identified. Attitudinal barriers come first and they involve patients, parents,
the pediatric caregivers and their adult counterparts.  The pediatricians and internists in this
audience have given much thought to these issues and therefore probably do not represent the
profession as a whole.

   Adolescents are having more trouble than they need with this aspect of growing up;
however, they themselves do not lack enthusiasm to become involved in transition and can see
future benefits in moving on to a state of greater autonomy.
   Parents are understandably unwilling to leave the familiarity, security and expertise of
child centered services and to enter an unknown territory, which usually seems to compare
unfavorably with the known, at least in the initial phases.
   Pediatricians and their associates, having a tremendous interest and investment in the
recipients of their care, feel a proprietary responsibility that encourages them to cling to the patient
even when they know it is in the patient's best interests to make a change. Sometimes it may seem
that the immediate adult care is not entirely responsive.
   The new responsible adult care giver has many hurdles to surmount. First, the idea that
pediatricians play medical games with their patients and over-indulge their patient's parents;
second, the fact that the parents know more than he/she does about the child, his problem, and the
goals for his care; third, the idea that it is normal for parents to be anxious, to expect satisfactory
explanations, and to wish for inclusion when decisions are made, which all takes valuable
professional time.

   The adult care giver will probably never have the same creative interest that was the vital
ingredient of the former relationship, indeed it may have been the adhesive that held the situation
together.

   Some diagnoses I dealt with required 10 to 15 years of constant attention to ensure a
maximal habilitation of the infant becoming a toddler, becoming a child, becoming an
adolescent. I molded those youngsters as best I could into the best they could be -- my interest was
m proprietary. I was aware of the situation and tried to maintain a reasonable balance. How
much more difficult for the reluctant physician!
   Because our society is so mobile, new patients are sometimes referred mid-stream; in
these instances, I found it hard to feel the same degree of interest in an inherited case as I had in
one I had cared for since birth. It must have been the same for my patients whom I transferred
elsewhere.

   My point is -- if these feelings exist within pediatrics -- how much more stressful might
this be when transferring to adult care.

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   Even today, former patients still beat their way through the bureaucracy to ask one to
intervene when barriers have become insurmountable.  Frequently, these barriers stem from
faulty communication or unreasonable attitudes.
   There are other points to be made and addressed:
       .   Existing knowledge gaps must be filled concerning techniques, community
       resources, experience of others, and achievable goals.
       .   The range of care delivery models must be assessed and documented.
       .    Methods of coordination with other services must be explored.
       .   The financing of care must be regarded as an immediate priority.
   We are talking about labor-intensive care, increasingly expensive, and the
reimbursement systems which have not caught up with these facts.
   Children with special needs entering the adult system are not overly welcomed because:
       .   They should many times overstay their DRG norm.
       .    They may not be covered -- any longer -- by their parents' insurance.
       .    If employed -- even part time -- they may be part of the working poor -- uninsured
       but not destitute enough to be on welfare or even eligible for medicaid.
   For the rest of this century, everything we discuss in reference to medicine, health care
delivery or policy will merely be symptomatic of the overarching tension between our aspirations
for health care and our resources to pay for them.
   The two populations at greatest risk of medical neglect are the elderly and children. We
will have to fight harder than ever for the funds to care fpr special needs children and young
people.

   It is unlikely that any administration or any Congress will address this issue on the clear
merits of the situation -- in spite of the nation's affluence and prosperity. But the day will come
when the business community will exert much greater pressure than at present for a more realistic
method of funding health care. We must be prepared for that day so our special needs children are
not shortchanged as the health care delivery system is rebuilt. We must be certain that there is
adequate documentation of the essential range of health services so that implementation may take
place without delay as soon as resources are made available.
   These are the issues we ask you to discuss with us over the next two days -- along with any
additional ones from your experience you would like to bring forth.
   Let us clearly identify the problems and plan concrete efforts which each of you can pursue
within your own organization. Let us then outline some efforts we can jointly pursue to knock
down the barriers currently preventing our young people from living their lives to the fullest.

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ABackground Issue Brief

       Suzanne M. Bronheim, Ph.D.
National Center for Networking Community Based Services
  Gemgetowu Univemity Child Development Center
          Washington, D.C.

   Over the past 20 years, there has been a dramatic improvement in mortality rates for
many chronic "childhood" conditions due, in large part, to advances in medical and surgical
care. Survival rates for disorders such as spina bifida and leukemia have increased by almost
200 percent. The average age of survival for young people with cystic fibrosis is pushing well into
the twenties with one third living into their thirties. It has been estimated that, overall, some 84
percent of children with chronic conditions survive into adulthood.

   Unfortunately, in many cases, the medical care system has not changed in response to its
own successes.  Large numbers of these "survivors" continue to receive their medical care in
pediatric settings. It is not uncommon to see patients in their late twenties receiving inpatient care
on pediatric wards and in children's hospitals. Others are simply lost to ongoing follow-up once
they "outgrow" pediatric services, since no specialty services addressing their condition exist in
the adult medical system.

   This situation has a negative impact on these young people in several ways. While the
pediatric caregivers who have provided speciality care throughout their childhood are typically
indisputably expert in treating their special conditions, they may not have the expertise to address
the medical needs of adults. Issues related to gynecology and obstetrics for young women and
other disorders of adulthood which may be unrelated to the young person's special health care
needs may not be addressed as well as they would be in the adult health care system. In addition,
other pediatric subspecialists providing consults may also lack experience with "adult" disorders
or the manifestations of a given problem in the adult population.

   Another way in which receiving medical care in pediatric settings may have a negative
impact on young adults is in relation to their own psychosocial development. Pediatric caregivers
may have a difficult time switching from dealing with the parents as the responsible parties to
dealing with the young adult. It is hard to accept that the child one has cared for is now an adult
and pediatric caregivers may collude with parents in "overprotecting" the young patient. Issues
such as sexuality, reproduction, vocational concerns or even the financial aspects of care
decisions are often not discussed with the patient, as they would be in the adult health care sector.
Even the best efforts at education in these areas by pediatric caregivers may be ineffective if the
patient feels that his/her parents make the decisions about care. Remaining in pediatric care
settings becomes one more factor impeding the development of adult independence in young people
with special health care needs. Finally, there is a very insidious, negative message in keeping
these young adults in pediatric care.  It is an understandable by-product of the history of the
mortality of many of these "childhood" disorders, but it is devastating. The failure to develop a
capacity to care for these young adults in the adult care system suggests that we believe that they are
living on "borrowed time". It gives the message that working to make the difficult transition to
adulthood may not be worth the effort, because it may be a greatly shortened span of time!

   Young people who do not have special health care needs seem to make the transition to adult
health care with little fanfare. Why does there seem to be this bottleneck in the progression for
youth with special health care needs ? A number of factors seem to play a role in the problem.
These include: attitudinal barriers (on the part of pediatric and adult caregivers, families and
patie;*ts) knowledge gaps; care delivery models typical in adult health care; financing of adult
health care services and coordination of health care services with other needed services. Each
issue must be addressed in order to insure that youth with special health care needs can grow up
and find appropriate medical care.

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   Those who have attempted to facilitate the transition of young adults to the adult health care
system have quickly discovered that the issue arouses very strong feelings. Parents are often
quite reluctant to leave the pediatric caregivers who they often view as having kept their child
alive, in order to seek care in untested waters. These feelings are particularly acute when their
child's disorder is one that is not familiar to the adult caregivers.  Parents may have close
personal ties with the pediatric caregivers forged during moments of crisis and shared worry.
The clinic and hospital staff are often a major part of the family's support system. Parents who
experience the move to adult health care settings have a hard time adjusting to the focus on the
young adult as the responsible party. They complain of feeling shut out and ignored when the
adult caregivers consult with them as a courtesy with the permission of the young adult patient.
Thus parental resistance to the move can be quite strong. Many young people share their parents'
fears about the change as well, although most express very positive feelings about being "treated as
an adult."

   The caregivers' attitudes also make the transition problematic. Pediatric caregivers also
have strong ties to the families and the patients--it is very hard to see them leave. They have a
difficult time really believing that the child they may have cared for from birth is truly an adult
(or should at least be treated as one.) They feel that no one in the adult system has the expertise to
deal with the patients' medical problems and, more importantly, that adult caregivers are cold and
uninterested in these patients' many psychosocial needs. On the other side of the care system,
adult care providers may feel that these patients are immature and their families too involved and
demanding. If they do not have experience with a young person's special condition, the caregivers
may feel defensive or threatened about seeking consultation or supervision from pediatric
caregivers who specialize in the treatment of the disorder.  Certainly there is no incentive to
pursue the treatment of a group of patients if one does not have the knowledge and experience to do
so.

   These attitudes must be addressed in any efforts to change the system of care. When the
problems and setbacks that attend any change come along, it is too easy for any or all of the parties
involved to feel that "it isn't worth the trouble" or to be too quick to see any problem as proof that
their worst fears have been realized.

   One very real barrier to a smooth transition to adult health care for youth with special
health care needs is the lack of knowledge and expertise in the adult care system to deal with their
special problems. Some of the disorders involved have been historically thought of as "pediatric
conditions", many of which are cared for in special centers or units. As a result, physicians and
other caregivers in the adult system may have little knowledge and no experience caring for these
disorders. Some form of training and expanding knowledge is needed to make the transition
from pediatric settings, where the staff have had years of experience with a particular disorder, to
the adult settings.

   While these young adults with special health care needs should be treated as adults, many
have had delays in both the physical and psychosocial aspects of adolescence. Thus many in their
twenties are more like mid-adolescents in their development. Their families are also often still
unresolved about letting go and making the move to becoming the parents of an adult child. A
large proportion of adult specialists may not have had training in the issues of adolescent
development and may be perplexed and frustrated in caring for this population. This lack of
knowledge can easily undermine the success of the transition.
        .
C--MO&&

   Over the years, the pediatric system of care has recognized that interdisciplinary team
care is the most effective model for serving children with special health care needs and their
families. Many of the disorders treated need the input of multiple professionals, all of whom must
have a familiarity with the special aspects of the care of a particular condition. While the
interdisciplinary team approach to care has made an appearance in the adult health care system
(e.g. cardiac care clinics, diabetes centers, etc.), it is not the model available in most specialty
departments.  Many physicians in the adult care system are unfamiliar with or even

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uncomfortable with this model of care. It is important that in seeking to find medical services in
the adult sector, young people with special health care needs do not have to give up the model of care
that is critical for appropriate treatment of their chronic health conditions.

   The financing of care for young adults with special health care needs is a problem that has
an overriding importance for the issue of growing up and finding medical care. There are issues
for caregivers, institutions and consumers.  Caregivers may find that caring for these young
people is more time consuming than usual, yet reimbursement systems may not adequately
recognize this factor. In addition, team care is very costly and again, reimbursement systems
may not provide adequately for the many kinds of services needed. Inpatient hospital care in
adult institutions, where DRG's have been applied, may be problematic. Because of the complex
nature of their medical problems, these young patients may be seen as a drain on resources, when
DRG's do not recognize their real need for prolonged hospital stays. Even in states where there are
public programs to help pay for care of specific conditions after the age of twenty-one, the agencies
administering them are child oriented and may relate only to pediatric institutions or caregivers.
Finally, a very serious issue is the fact that these young people typically find themselves without
any health insurance coverage. Once they reach the age of twenty-two or leave home and school,
they are no longer covered under their parents' policies. If they are gainfully employed, they may
not qualify for public sources of medical coverage. Often they also find that they cannot secure full
time employment, because they are a risk that employers do not want to insure. Thus, incentives to
become productive, independent adults may be undermined in order to deal with financing health
care needs.

     . .                  .
Q

   Young people with special health care needs often have many other associated needs. They
may need a variety of special therapies, special equipment, extra training to help with vocational
fulfillment, special diets, and special accommodations in the environment. During childhood,
the educational system and the medical system may coordinate many of the services for the child
and family. The adult care system, not having dealt with these particular needs, may lack
knowledge of resources and ties to the resources needed. Development of these ties within the adult
care system will be needed to insure appropriate care for these young adults. On the positive side,
the adult caregivers are much more familiar with many types of services that will aid in the
growing independence of these young people in the areas such as vocational development.

   This paper is certainly not meant to be an exhaustive discussion of the issues related to
transition to adult health care for youth with special health care needs. These are, however, the key
issues that will need serious consideration throughout the system. Clearly, members of the
pediatric and adult health care systems, families and young adult consumers must all become
actively engaged in the process if positive change is to be effected. Many of the statements are
generalizations and there are specific instances when youth with special health care needs can
access appropriate adult health care services. There is, however, much work to be done.

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   In order to present the concept of adolescent transition from more than one perspective,
papers were requested from professionals who were known to have a special viewpoint based on
their own life experience or special interest.

   We have an introduction through the highly personal experience of a young woman who
felt deeply the emotional discomfort of leaving the protective warmth of Pediatrics for the cooler
clinical atmosphere of an adult service. However, unlike others, she was able to make a personal
adjustment, and to survive with distinction.

   A pediatrician speaks for professional health staff when they are faced with
implementation of a transition program.  The increased life expectancy of children who have
cystic fibrosis made it necessary to develop a bridging program between a Children's Hospital and
an adult pulmonary unit. From this paper, we learn about the importance of preparing young
people for this transfer and to choose the optimal time for the event. The benefits of an
interdisciplinary care team are described.  The difficulties experienced in developing a strong
link between these two programs are not minimized, and we have a realistic picture of the
reluctance and rewards associated with the growth of such cooperation. We see these events
occurring through the eyes of the responsible health care providers.

   A health care financing expert addresses the universal burden carried by disabled
adolescents and their families. She has given a succinct account of the financial dilemma faced
by nearly all individuals in this category when eligibility for medical insurance benefits is
curtailed by age, and they fail to qualify for coverage through state or private schemes. The points
are made through discussion of an imaginary young adult - and specifying the available options
and alternatives available for obtaining payment for essential medical care.

   The paper on training emphasizes the importance of an appropriate orientation for
professional staff, patients, and their families when improvement of the transition process
becomes a priority. Staff in both pediatrics and adult health services should work together and
share relevant information; this should be a continuous process before and after transition. The
technical aspects of managing rare medical conditions with which the adult physician may be
unfamiliar, must be included in the curriculum. Attitudes and communication skills are central
to the successful shaping of new relationships between staff and young patients.

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Learning to be an Adult Patient: When the Rules Change

Margaret Stineman, MJI.

   My own medical treatments, most of which were surgical, began at age three and
continued into my adult years. I do not want to talk a great deal about the specifics of my medical
condition or surgery. Briefly, I had procedures on my eyes, my musculoskeletal system, and my
internal organs.

   When I was a child, I would always bring my guitar to the hospital. I named the guitar. Its
name was "Friend." I was in the hospital often, so the staff came to welcome me and "Friend." I
would make up songs - sing for the other children, for the nursing staff, the doctors, and the
orderlies. Everybody was interested in my guitar and my musical gifts. Sometimes the nurses
from the adult wards would borrow me to cheer up their patients. The older folk would marvel at
my "courage," and feel inspired by the songs saying things like "Poor little thing, in spite of all
her problems she can smile." I treasured these times, since by lifting the spirits of those around
me, I forgot the hurt. One man who, looking back, must have had laryngeal cancer sent me a book
of Emily Dickenson's poetry. In the cover was inscribed "Dear little Margaret, I can not use my
voice anymore. Your songs are my words."
   The guitar was a way that I could feel comfortable and accepted within an environment

that inflicted physical pain on me, and left me frightened and set apart from my peers.  It was a
way of reaching out to other people. In letting me play my guitar the pediatricians, the surgeons,
the nurses, and all the people in the hospital let me show them that I was a human being who just
happened to be physically different. After a spinal fusion, I learned to play the guitar lying flat on
the bed without moving. It would draw people to me. I would not feel so alone. So different.

   I made my own transition from pediatric into adult health care on schedule quite abruptly
when I was 16.  I can recall sitting on starched white sheets in my semi-private room, taking
Friend out of its case and quietly beginning to pluck out a melody. No one marvelled at my
courage. My songs inspired no one. No one saw my gifts. Nobody was drawn to listen. In fact, I
suddenly blushed realizing that playing my guitar within the sterile walls of this hospital room
was disquieting to the nurses, the doctors, and the patients. In fact, it was down right infantile. I
sent my guitar home with my parents. I had to face the fact that appealing crippled children on
posters grow up to be uninspiring physically deformed adults. The adult medical milieu was no
nonsense. It was interested in one thing - the expedient treatment of disease - the cutting - the
curing.  It appreciated the privacy of the individual at the expense of personal sharing and
expression. The doctors and the nurses had little time or inclination to know the patient. In my
own medical internship, I would need to confront this tragic fact made vivid by my past
experiences. When suffering from post call sleep deprivation, or when struggling to save lives
one can not always see or hear the patient. So to survive, I was forced to adopt the methods of those
who had cared for me, even though I knew this approach was imperfect. The guitar for me as a
child was a calling out of who I was. As an adult I had to close myself, and just become a patient.
The care of disabled children is holistic and team driven. The young child is seen as developing
within the context of family. Disabilities are noted, but more importantly abilities are seen and
encouraged. An attempt is made to view illness within the context of a life. I found this less to be
the case as an adult. There is a supportive aspect of pediatric care which is lost in the transition
into adult care. The care of the adult is disease oriented, less holistically supportive. This was one
of the most difficult aspects of my transition into adult care.  One minute I was in a nurturing
environment that attempted to see me as an individual that happened to be physically unusual.
The next moment, I was in a medical milieu that did not care to look beyond my physiological
impairments.

   As a child the many procedures, diagnostic tests, and surgeries were done on me as a
passive participant. The doctors, the nurses, the therapists had some special knowledge. Children
are not good at tolerating pain. The physicians seemed to feel that reasoning about the necessity of
drawing blood is going to fall on deaf ears. In fact, I put up gracefully with the various procedures I

10


had in my early years because I felt there was no alternative. The doctors knew everything. I had
no right to question. It all ran by magic law. Each time, I was rolled into the OR I thought I would
roll out normal. If I didn't it just meant I needed more surgery. Decisions were made by my
doctors, my parents, not by me.

   At age 18, I was absolutely dumbfounded when a resident turned up in my hospital room
with a consent form for surgery. This doctor was telling me there were risks that I could die, and
that I personally would have to accept this possibility. I saw death about me in the hospital as a
child but had not connected it to myself. Where were my magical pediatric illusions? The doctors
in pediatrics were so magical. They could cut and fix my body. They had never told me I could
die. Now I sat in a foreign land. A different hospital. A different health care system. I was
supposed to become part of the decision making process. I could take control, but I did not know
how. Did I even want to take control? How could I ask questions? How could I make a decision
about a medical procedure or the need for surgery ? For 16 years the decisions were made for me.
Although, at 18, I signed the consent form, I neither read nor comprehended it. I signed it, not
because I wanted the surgery, but because I had always done what had been asked of me. The
results of the surgery would direct the remaining years of my life.

   As a disabled child I was an infant. As an adolescent I was a child. In my adult years, I
would finally pass through adolescence. Prolonged infancy encouraged dependency. This made
the acceptance of personal responsibility difficult.  As an adult aged patient I felt cast into a
foreign sea. My boat had oars, but I did not know how to use them. In broad terms the adult seeks
care, the child receives care. The developmentally immature adult in the adult system of care is a
victim since he or she is assumed to be autonomous.

   Please realize many of the children we will be thinking about today have far greater
physical problems than I do. And few have the remarkable family support I have. Many might
feel differently about their transitions into adult care.  Others may never even make it, forever
remaining children in adult bodies, and still others may make it but in the confusion become lost
to the health care system entirely. I was lucky. I am an example of what should, and can be, but
what rarely is. Only with my present vision can I make sense of my past experiences. There were
four primary differences in the two systems of care that led to difficulty in my transition. First,
was the change in both type and level of support. Second, was the change in the decision making
and consent process. Third was a marked reduction in the acceptance of family participation.
Fourth, was a reduced tolerance and sensitivity to the psychosocial issues of disability.

   We have a magnificent system of health care in this country. The fact that I can stand
here before you today is attributable to that fact. Now I am proud to take my place in it as a
physician. Through our medical advances, we are giving life to children who in the past died.
These children are now entering adult care.  They bring new problems to a system that is
unfamiliar with childhood disabilities and developmental problems, I believe that our ability to
care for the person has fallen short of our capacity to care for the disease. Neither the pediatric nor
adult care specialties are at fault. Each needs to adapt, and form collaborative bridges to and from
the other. The briefings 1 read in preparation for this conference are an excellent beginning.
They imply a sharing of expertise, and a coordinated transition plan. It was primarily the stark
contrast between the two systems of care and abrupt transition that seemed problematic.

11


Growing Up and Getting Medical Care:
Youth With Special Health Care Needs
Obstacles to Transition fi-om Pediatric to Adult
      Health CaIx? systems

   Daniel V. Schidlow, M.D.
Associate Professor of Pediatrics
Temple University School of Medicine

Chief, Section of Pediatric Pulmonology and
   Director, Cystic Fiirosis Center
St. Christopher's Hospital for Children
      Philadelphia, PA

   The result of medical progress has been an increased survival rate for children with
chronic diseases. The prevalence and median survival of diseases characteristically thought of
as "childhood illnesses" in the past has increased steadily over the years. A significant number
of patients with conditions such as cystic fibrosis, diabetes, spina bifida, end stage renal disease,
operated congenital heart disease, etc., live nowadays well beyond the second decade of life. These
patients represent a significant segment of the entire population of patients with chronic disease,
and, as they grow older, they create an increasing demand for specialized care (Table 1). For
instance, the survival for patients with cystic fibrosis has gone from a median of about one year in
the 1950's to 27 years of age in the late 1980's. Over If3 of the population of patients with cystic
fibrosis currently registered at accredited centers in the United States is over the age of 18 years.
   Many adolescents affected by chronic disease must be prepared eventually to confront life
as adults. Childhood and early adolescence in unaffected children are characterized by strong
parental involvement and little shared decision making. Dependency is a norm concerning
insurance, economics, transportation
and emotional well being. The individual's main occupations are schooling and recreational
activities.  Family physicians or pediatricians care for these children until their emotional or
physical needs may demand the care to be given by an adult specialist. Adult living is
characterized by independent living, self reliance, and meaningful relationships. The growth
and development of the chronically ill child and adolescent should approach, as much as possible,
that of the unaffected individual. The normal pattern of development includes the transfer of care
from pediatric to adult caregivers.

   The process whereby this transfer takes place should be smooth. There needs to be a
"transition" period during which the changes take place.
   Why transition? The goal of transition programs is to achieve for each chronically ill
individual a normalization of social and emotional development by providing the ideal
environments in which independence and self reliance flourish. A successful program should
result in improved compliance with therapy and effective planning of long range life needs. In
the context of this scenario, it is our belief that transition from pediatric to adult health care
systems is desirable as a reflection of the normalization of the individual's social development.
The benefits of transition may be listed as follows:
       .    Normalization of development,
       .    Promotion of independent behavior,
       .    Promotion of self reliance,
       .    Improvement of compliance with therapy,
       .    Provision of an appropriate environment,
       .    Planning long-range life goals.

12


                            Table 1
Estimated Prevalance and Maximum Prevalence Estimates for Eleven Childhood Diseases
               Ages O-20, United States, 1980

Disease

Estimated proportion
surviving to age 20
  (percent)

1980 prevalence
estimate per 1,000

Estimated maximum
prevalence assuming
100% survival to age
20, constant incidence
and age of onset

Asthma (moderate and severe)          98             10.00               10.20
Congenital heart disease             65             7.00              9.33
Diabetes mellitus                  95             1.80               1.89
Cleft lip/palate                    92             1.50               1.62
Spina bifida                     50             .40                .67
Sickle cell anemia                  90              .28                .29
Cystic fibrosis                    60              .20                .26
Hemophilia                      90              .15                .16
Acute lymphocytic leukemia            40              .ll                .22
Chronic renal failure                25              .08                .19
Muscular dystrophy                 25             .06                .14

Estimated total
(assuming no overlap)

21.58              24.97

Source: Gortmaker and Sappenfield, 1984

13


   Where do the obstacles to this transition process lie in the field of health care? Patients will
be unable to have their care transferred effectively from a pediatric to an adult health caregiver if
their behavior is extremely dependent or immature, or if the degree or instability of their illness is
such that transition is unadvisable or risky. Mental retardation or psychopathology has proven to
be a particularly difficult hurdle to overcome in our experience, as is the lack of good support
systems, i.e., an encouraging family or partner.  Patients who have a basic mistrust in their
caregivers will view attempts to transfer care as abandonment or lack of interest, and finally,
those who do not comply with therapeutic regimens tend to be reluctant to change as well and
uncooperative with innovation.

    The Familv,  For successful transition to occur, it is very important to include the family
in the equation. To a great extent, transition is a family affair and its success depends on the
cooperation of those people who constitute the support systems for the individual. Transition truly
starts at birth and should continue throughout adolescence into adulthood. Parents should try to
endow their children with the necessary tools to achieve independence and self reliance.
Emotional dependency on the part of the parents, excessive need for control of the child's behavior
and activities, and parental psychopathology mitigates against successful transition.  The
perception of the disease process as lethal at an early age (even when this is not necessarily
accurate) or the perception of the patient as unduly healthy or unduly sick, will hamper efforts to
achieve transfer of care effectively. Mistrust in caregivers is also a serious obstacle.

   The Pediatric Care. This area is one of the most important and essential to
successful transition. Many pediatricians who have invested their careers in the care of these
patients, see with some apprehension their transfer to a new source of services. They may see it as
a serious blow to their economic or programmatic base, their ability to support their health teams
and their research and educational activities. Some will allege a "poor return on the investment"
of having to help train adult specialists unfamiliar with the disease.  They may have no
confidence in the ability of their adult colleagues' care for these patients. Some may feel that they
have the skills necessary to deal with all aspects of care of a particular disease regardIess of the
age of the individual. Others may hide a subconscious feeling that the patients indeed have a short
life span and change of caregiver is traumatic and unnecessary, or that the adult patients can be
comfortably and appropriately cared for in pediatric institutions by pediatric health care teams.
The overriding concerns seem to be the economics of losing patient base and the strong emotional
bonds between pediatric care givers and patients and their families.
   The receiving end: the adult careeiva. The adult health care system has not been ready,
by and large, to care for these patients. Lack of knowledge of specific disease entities, heightened
perceptions of the demands of care, and economic concerns stand in the way of a more receptive
attitude. Health care administrators worry about the potential negative impact of undersupported
chronic disease programs.

   Adult caregivers have insufficient understanding of the nature of congenital diseases and
may have a rather "catastrophic" view of their clinical course. It is of interest, however, that the
transfer of care from pediatric to adult systems occurs naturally for certain conditions such as
diabetes or end-stage renal disease. This fact is possibly related to the degree of expertise already
present in these areas in Internal Medicine. This is not, in general, the case with conditions such
as congenital heart disease, cystic fibrosis or spina bifida.
   The process or transfer from pediatric to adult health care systems is by no means easy
and requires effort by all parties. The initiative and leadership must originate, in my view, from
the pediatric caregivers and be strongly supported by interested caregivers in the adult health care
community. Parallel systems at the tertiary care level as well as in the community need to be
structured with the participation of a variety of professionals. Some of the necessary conditions for
transition from Pediatric to Adult care are:
       .    A Pediatric team leader,
       .    An Adult team leader,
       .    Ongoing collaboration and sharing of responsibility,
       .    Patient and family preparation (coordination of needs with attitudes),
       .    Team building and communication,

14


       .    Administrative and economic planning,
       .    Interagency collaboration.
   For the adult caregiver unfamiliar with the care of chronically ill children and
adolescents, but who is interested in helping establish the transitional bridge, this process presents
opportunities for professional fulfillment, prestige, research opportunities, career advancement,
use of innovative approaches to health care, emotional rewards, and in most cases adequate
reimbursement.

   It would be naive to expect this process to be simple. On the contrary, it is fraught with
difficulties.  Emotional and financial issues are closely intertwined and may easily weaken
efforts to meet the goals previously described, if not dealt with promptly. Economic support for
multidisciplinary care, widespread education and support of health care activities is still
insufficient and more is needed. Insurance coverage for chronically ill individuals attempting
to leave the parental home is difficult to get and presents a grave concern. Some states have
expanded through their Crippled Children's programs or line items in state budgets to these
specific adult programs. The budgets and numbers of these programs are insufficient at this time
to cover all the needs of these individuals.

   The future brings new challenges and issues of concern. These issues must be faced not
only by health caregivers but by the community as a whole, including government, private
industry and consumers. Issues for the' future include the following:
       .    Methods to increase the number of transition programs,
       .    Ways to achieve interagency collaboration,
       .    Definition of the scope of "over 21 state programs",
       .    Medical insurance for the young disabled adult,
       .    Home and community based care,
       .    Role of state Crippled Childrens programs.
   Our program at Temple University School of Medicine in Philadelphia, Pennsylvania
will be described by Dr. Stanley Fiel later in this meeting.  Our experience and that of others
indicates that transition is not an impossible task. It is our firm conviction that transition from
pediatric to adult health care systems for chronically ill youth is desirable, feasible, and
rewarding.

li5


Adolescents and Young Adults with special Health Care Needs:
        The Challenge for Financing

Peggy McManus

   Obtaining major medical health insurance -- either private coverage or Medicaid -- for
young adults with special health care needs is a very serious problem. It makes the insurance
problems of pregnant women, adolescents and chronically ill children look minor.
   Today, more than 20% of disabled young adults, ages 19-24, are without any form of health
insurance protection at all. Thousands more are insured but without adequate coverage for the
services they require. I don't know how many of you have actually attempted to find coverage for
someone who is uninsured and has a pre-existing condition.  Let me assure you it is not easy.
And, unfortunately, in many instances it is impossible, unless the young adult moves to another
state, or lands a job with insurance benefits, or becomes more disabled, or pregnant. Still, I believe
there are many real financing options that we can take better advantage of now in our own
communities and at the federal and state levels.

   I am honored to be here to present new findings from our study on adolescent health
insurance coverage funded by the Bureau of Maternal and Child health. Briefly, a year and a half
ago, Paul Newacheck of the Institute of Health Policy Studies at UCSF, Harriette Fox and I
received a three year grant from the Bureau of MCH to analyze the health insurance needs and
options for adolescents and young adults.

   I will begin my presentation with a few facts on adolescents and young adults who have
special health care needs.  Next, I will discuss the hypothetical case of Susan, aged 18, with
juvenile diabetes -- not unlike the case of John in our agenda materials -- and play out a probable
scenario if she were privately insured, publicly insured or uninsured. I will use this case example
to show what short and long-term financing improvements might be attempted.
   Although there is much to discuss in financing, I am going to limit my presentation to
ways in which Susan and John may retain insurance coverage after they lose their "dependent
umbrella" under their parents' plans, and also how to get the uninsured Susans and Johns of this
world some insurance benefits.  I will not be addressing ways to improve benefit plans or
reimbursement -- two very critical issues.

The major themes I would like to leave you with are these:
.   We have a serious insurance crisis for young adults with special health care needs
   and one that cannot be simply solved with what is available today. The major
   problems are that their access to private or public health insurance plans is very
   limited - in fact, many refer to this group as medically uninsurable; their
   premium costs and other cost-sharing requirements are unaffordabls considering
   a typical young adult's income; and finally, once insured, their plans are often
   woefully inadequate. Consequently, I believe signficant reforms in both the
   private and public sectors will be required to have a significant effect on these
   problems.
.   The second theme is that the sooner disabled adolescents and young adults and
   their families are counseled about their financial options, the better the results will
   be. The best time is when these young persons are ages 17 or 18, not 20 or 21.

   Who are the disabled adolescents and young adults about whom I will speak? According to
the 1984 National Health Interview Survey, they are the 6% of all noninstitutionalized adolescents
or nearly 2 million lo-18 years olds (l), and 5% of all young adults or almost 1 l/2 million 19-24
year olds (2) who suffer from chronic conditions that limit their ability to engage in school,
extracurricular activities or work. In general, I am speaking about a relatively small population

16


Table I

LEADING CAUSES OF DISABILITY AMONG ADOLESCENTS 10 TO 18 YEARS:
                     us. 1984

Main Cause of Disability

1. Mental Disorders
2. Diseases of the Respiratory System
3. Disease of the Musculoskeletal System

  and Connective Tissue
4. Diseases of the Nervous System
5. Diseases of the Ear and Mastoid Process

Estimated Prevalence
(in thousands)

634
406

2%
115
80

SOURCE:

National Health Interview Survey: original tabulations from public use tapes. In:
Newacheck, Paul:  Adolescents with special health care needs: prevalance,
severity and access to health services. I&&&&. Forthcoming.

Table 2

       HEALTH CARE COVERAGE CHARACTER.ISTICS
          ACCORDING TO DISABILITY STATUS
FOR ADOLESCENTS (lo-18 YEARS) AND YOUNG ADULTS (19-24 YEARS):
                 U.S., 1984

Adolescents     YoungAdLilts     Adolescents Young Adults
wilh           with          wim      without
Disabilities      Disabilities       Disabilities   Disabilities

Totalwith
                86%

Privateco\Ferage      68%

Public(Jimmge       22%

Totalwithno
                14%

I I

     86%         73%

79%

57%           76%         67%

28%            11%          7%

21%           14%         27%

SOURCE:

National Health Interview Survey: original tabulations from public use tapes. In:
Newacheck, P. and McManus, M. Health insurance status of adolescents in the
United States. &d&x&. Forthcoming.

17


with significant needs for major medical insurance protection.
   The leading causes of disability among adolescents, ages 10-18, according to Paul
Newacheck (3) are mental disorders, diseases of the respiratory system, diseases of the
musculoskeletal system and connective tissue, diseases of the nervous system, and diseases of the
ear and mastoid process (see Table 1). Taken together, these five chronic conditions represented
3/4ths of all disability among noninstitutionalized adolescents in 1984.
   Preliminary data on disabled young adults from the 1984 National Health Interview
Survey show that diseases of the musculoskeletal system and connective tissue are the leading
cause of disability followed by mental disorders, diseases of the respiratory system, nervous
system, ear and mastoid process.
   What is the insurance status of adolescents and young adults with these chronic disabling
conditions? You can see from Table 2 that 14% of disabled adolescents or 270 thousand adolescents
and 21% of disabled young adults or 300 thousand young adults are uninsured. Taken together,
this represents a little more than l/2 million young persons without any form of health insurance
protection.
   Let us look more closely at the population of disabled young adults, on whom we are
concentrating today. How do they compare to disabled adolescents? According to Table 2, young
adults are 50% more likely to be uninsured. Only 57% are privately insured - 16% fewer than
disabled adolescents, and 28% are publicly insured - 27% more than disabled adolescents.
   How do disabled young adults compare to nondisabled young adults? They are four times
as likely to be publicly insured as their nondisabled counterparts, as shown in Table 2.
Notwithstanding, over half of disabled young adults are still privately insured.
   What difference does health insurance make for disabled young adults' access to primary
care? According to Paul Newacheck (1): "Disabled adolescents without health insurance were
almost three times as likely to have delayed seeing a doctor for 2 or more years compared to
disabled children with insurance coverage."
c==stiv
   Turning from national facts to a real life case example with which we can all identify;
Susan is aged 18 and has juvenile diabetes.  Looking at Susan in some different financing
scenarios, we can review her benefits and predict how financial counseling might be helpful. The
choice for Susan who is aged 18, not John who is 21, is intentional because the sooner the young
adult and his or her family are counseled, the better the chance of reasonable insural)+ coverage.
Susan is privately insured by her father's group health insurance plan and she will be completing
school in June. Her health insurance options will depend upon whether she stays in school, works,
gets married, lives at home, or lives on her own.
1.   First and foremost: Susan's parents should find out at what age she will lose coverage
   under her father's plan. In most major medical plans, the magic age is 18 unless the
   individual is regularly attending school.  Susan's parents should also be informed that
   many employers are even lowering the age of qualified dependents regularly attending
    school -- down from 22 or 23 to 18 or 19.
2.   Whether or not Susan goes on to college, her parents have at least one option for keeping her
   on their plan. It is called the COBRA continuation policy. If Susan's father works for a
   company with more than 20 employees, he needs to notify his employer within 60 days after
    Susan's 18th birthday that  she will no longer qualify as a dependent and that he wants to
   purchase the company's group plan for her. Of course, Susan's parents or Susan will have
   to pay the full cost of the plan -- which might come to about $2,000 per year. This COBRA
   continuation policy is available for three years.  While expensive, no pre-existing
   condition exclusions can be used and they must offer the same plan as previously
   available. Moreover such a group plan would be less expensive than a comparable non-
   group plan.
3.   Another option for continuation is as follows: Again, before Susan turns 18, her parents
   should call their state health insurance commissioner's office or local advocacy group to
   find out if they reside in a state that has mandated a law which requires that handicapped
   and financially dependent young adults can remain on their parent's policy. According


   to a recent Blue Cross survey, 34 states have such a mandate. Under this rule, Susan's
   parents must notify their employer within 31 days of her loss of dependent coverage or their
   application will be unsuccessful.  This mandate does not apply to employers who self
   insure, and over 50% are in this category. As you can see, the age of 18 is a very important
   time for financial counseling for adolescents with special health care needs.
4.   If Susan is going to college, even on a part-time basis, she should be encouraged to purchase
   a student health insurance plan if it is offered, and if she qualifies. In our 1988 college
   health insurance survey, almost half of all plans had a pre-existing condition exclusion,
   and another third imposed a waiting period for pre-existing conditions. The rules for pre-
   existing conditions vary. Typically, coverage for treatment of the pre-existing condition
   is excluded but other ongoing health needs are covered. In addition, many plans have a
   pre-existing condition waiting period for various lengths of time, commonly 1 year, after
   which time, coverage will be available. In other words, Susan may need to purchase the
   insurance for one year so that she can have subsequent coverage. Note: Student health
   insurance plans are distinct from the student health center services available at most
   colleges. Student insurance premiums are very inexpensive - about $250 per year in 1988
   (4). As might be anticipated, student health insurance plans vary dramatically in their
   quality, with state universities and larger colleges offering better plans in general.
5.   If Susan is not going to school, she should be encouraged, if at all possible to seek
   employment on a full-time basis in a medium to large firm. Otherwise, she may be totally
   incapable of gaining employment based insurance.
6.   If Susan cannot continue with her parent's plan, cannot get student health insurance,
   cannot get employer-sponsored health insurance, then she is in serious difficulty... This,
   of course, is exactly where our financing system disintegrates for Susan and all the other
   young adults with special needs in this country. In this instance, she should be advised to
   contact Blue Cross for information about their open enrollment period, and also contact
   other large federally qualified HMOs for information about any open enrollment period.
   This happens only rarely -at best once a year- and it is not advertised, for obvious reasons.
7.   At this point, Susan and her family must begin to develop new investigative skills. Does
   the state offer a high risk pool ? Presumably she would qualify if she can show proof of
   being rejected from insurance twice.  Does the local advocacy group have any other
    suggestions?
8.   As you can see, we have met a very serious private insurance roadblock.
Let us now put Susan in a different family, one in which she is covered under her mother's
Medicaid plan.
1.   If Susan does not go onto college or vocational training she will automatically be dropped
   from Medicaid as a dependent at the end of her 18th birthday, unless:
       --   the state she lives in adopted the Medicaid option to cover adolescents
       to ages 19,20, or 21.
2.   Even if Susan goes onto college, she will automatically be dropped at age 19 under
   Medicaid, unless again:
       --   the state she lives in adopted the option to cover adolescents to ages 20
         or 21.
3.   If Susan does not go onto college and works and stays at home or lives on her own, she can
   attempt to qualify for AFDC or SSI or general assistance under Medicaid. Unless she is
   pregnant or disabled enough to meet the stringent SSI requirements though, she will not
   qualify for Medicaid.
4.   As you can see, we have met a very serious public insurance roadblock.
FidIy, let us put Susan in another family who is uninsured.
1.   Susan and her family can attempt to qualify for Title V. However, as you know, the
   financial and diagnostic eligibility criteria are limited. She can also contact her state
   health department to see if there are any indigent care programs for which she might
    qualify.
2.   In the end, Susan must rely on the availability and capacity of publicly funded health


   services and free care from doctors and hospitals and other community agencies.
3.   As you can see, we have met a very serious uninsured roadblock.

   To address this nettlesome issue of financing strategies at any depth would take an entire
conference but briefly, there is no question that we must start counseling disabled young adults
and their families no later than age 18 or we all will suffer the consequences.
   See Table 3 on insurance strategies. On the private sector side, we must take greater
advantage of continuation policies. In addition, it is important to develop high risk pools in every
state for the medically uninsurable, as suggested by Harriet& Fox (5). Beyond that basic floor, it
is evident that some very significant reforms are needed. Suffice it to say we need to have at least
one major medical insurance plan that is available to young adults with special health care needs.
To assure that such a product is affordable, we can encourage more premium subsidy programs.
   In the public sector, our challenges are just as great. Unless we can expand Medicaid to
include more than those who currently qualify for AFDC and SSI, we will continue to have a public
financing system that does not serve the needs of disabled young adults, particularly those who are
single and living at home. As shown under Table 3, I have listed several possiblities for reform:
       Increasing financial eligibility
      Increasing optional groups
      Mandating for the medically needy
      Targeting general assistance funds
       Expanding SSI

                 TABLE 3
FINANCING STRATEGIES FOR DISAJ3IXD YOUNG ADULTS

Pr'vate SectQt
1.'   Encourage greater use of continuation and conversion policies.
      _-   COBRA: all employers with more than 20 employees
      --   State mandate for financially dependent individuals who are mentally or
       physically handicapped (in 34 states)
2.   Offer high risk pools in every state (available in 15 states).
3.   Offer premium subsidy programs. (Model: Caring Program sponsored by
   Blue Cross in Western Pennsylvania)
Public SectQ1:
4.   Expand Medicaid eligibility:
      *   by increasing the financial eligibility standards,
      *   by covering additional optional groups (e.g., all children under 21
       living in poverty)
      *   by adopting medically needy coverage in the 14 states without it,
      *   by targeting general assistance funds for disabled young adults who
      do not qualify for SSI or AFDC
      *   by revising SSI disability and financial eligibility criteria (e.g., by
      eliminating the 209B option, improving the disability listings, amending the
       resource requirements)
5.   Subsidize the purchase of Medicaid for the poor, near poor, small businesses and the
    uninsurable. (Model: Arizona).
6.   Increase support for Title V services to include young adults up to age 25.

   As with the premium subsidy programs described under the private sector, it would be most
beneficial to allow near-poor families, and families and young adults with high medical
expenditures the option of "buying into" Medicaid. Finally, in conjunction with other traditional


insurance reforms, it may also be wise to consider expanding Title V's mandate and funding to
include young adults with special needs.

       Both Susan and John need an insurance plan. Today over 20% of our Susan's and
John's do not have any and the likelihood that they could qualify for public or private insurance in
the U.S. is minimal. This is something that must be corrected soon in order to increase their
chances of a reasonable transition to adulthood.

1.

2.

3.

4.

5.

Newacheck, P. and McManus, M. Health insurance status of adolescents in the United
States. Pediatrics (forthcoming Fall 1989).

McManus, M., Greaney, A., and Newacheck, P. Health insurance status of young adults
in the United Stated. &&&& (forthcoming, Fall 1989).

Newacheck, P. Adolescents with special health care needs - prevalence, severity, and
access to health services. J&&&L& (forthcoming, Winter 19891.

McManus, M., Brauer, M., Weader, R., and Newacheck, P. The adequacy of college
health insurance coverage. Paper accepted by Journal of American College Health.

Fox, Harriette. (May, 1988). Final project report on feasibility of high-risk pools to provide
health insurance protection for children with special health care needs. Washington, DC:
Fox Health Consultants, Inc.

21


Staff Training for Transition
  Hilary E.C. Milk

   In order that adolescents with special needs may achieve a smooth transition from a
Pediatric care setting to an Adult health facility it is essential that plans for staff training should
be included in the process. This educational component could be considered in part as a re-
orientation of existing skills rather than a venture into completely new territory.
   From the days of the Children's Bureau, the Maternal and Child Health Program has
supported new health initiatives through Title V and related legislation by promoting staff
training in all the professional disciplines. The resulting benefits have had wide recognition.
   Today, we are a group composed mainly of physicians who have shown concern over the
graduation of disabled teens from a children's milieu to an adult health care environment, thus
underlining another developmental milestone.  It is expected that physicians should take the
initiative for planning a logical sequence of events for the implementation of this new focus.
   However, it should not be overlooked that much of the success of Pediatric programs for
children with disabilities has stemmed from the interdisciplinary team approach adopted in this
setting. This inclusion of all staff members has been advantageous for patients, families and
staff themselves. A core curriculum shared by trainees of all disciplines provides a solid
foundation, and in no way precludes study of special areas of expertise which are best addressed
within the single discipline.
o should be trained?

   The Pediatric staff both in the hospital and the community must be willing to relinquish
patients with whom they have had a long and eventful association. The briefing format of
Internists and other colleagues should be studied so that the history of each young person's medical
condition is understood and the current management and medical regime is clear. A
willingness to continue support after transition, if this should be needed, requires thinking
through before acceptance of this collaborative approach. Also, the preparation of families for this
change should be made well in advance of transfer.
   Those physicians who will take on the care of the adolescent as an adult will also need
preparation. These will include the principal Internist at the tertiary level who is responsible for
the continued planning and assessment for the young person's medical condition. This training
should be extended to the wide range of sub-specialists who may be called upon for special
problems.  The non-medical health professionals particularly nurses, social workers,
psychologists, nutritionists, and therapists for speech and occupation and physical rehabilitation
should be included. The staff in the Emergency Room should at least have some briefing about this
group of patients who may arrive in a critical condition.
   Primary care providers must be included; these physicians and others may be hospital
based, working in community clinics, or active in private practice.
What is the content of the trainin@
KnowledqA

   Internists are likely to be faced with rare disease entities with which they are unfamiliar,
as patients with these conditions have in the past rarely emerged beyond the confines of Pediatrics.
The inclusion of adolescent health in medical school curricula has been slow, and some senior
staff members may not be aware of the accumulated body of knowledge relevant to all teenagers
whether disabled or not.

An appropriate core curriculum might be expanded from the following headings:
.                . .
   i - with special emphasis on those
   factors which affect the uptake of medical care.
.    Growth and Develonment in the Teen Years - showing the sequence
   of events and the inappropriateness of chronological distinctions.
.   Effect of Teenwe Lifestvb - the possible effects of substance abuse,risk taking,
   inadequate nutrition, sexuality issues, unsatisfactory family relationships.


       .                    - particularly in relation to sports,automobile
      driving, alcohol use, dating, employment, genetic implications.
       .                     - onset of degenerative processes -
       physical, mental, and emotional changes.
       .            . . .
      Leeal for the care of minors; to include the rights of
       minors, informed consent, and privacy issues.
       .

       .         . .      .
      a and not to be limited
         to traditional areas of health education.
Skills and Metm
   These are directed towards the provision of comprehensive and continuous health care.
       .   Preventive Services - these should be provided in addition to the monitoring
       services for the principal illness or condition.  This periodic screening might
       include the following:  vision and hearing testings, dental assessment, a full
      physical evaluation, review of dietary habits, weight-pattern, exercise tolerance
       and gynecological assessment.
       o   s - particularly with reference to the characteristics of the disease -
      as previously, parents may have been the main recipients of this information. The
       structure of the health care system, especially the availability of community
       agencies and facilities, and an overview of the sources of financial support for the
       young adult are important topics for the new order.
       .   Counselling - this is not necessarily limited to medical matters, as the caregiver
       should be available to discuss various areas of need, or to make a useful referral to
       a more knowledgeable resource if more appropriate.
Attitu&
   Some physicians cannot tolerate their own perception of teenagers - these individuals
might well be helped to examine the cause of their aversion. When young people are thought to be
consistently too time consuming, challenging, unappreciative or non-compliant as patients, it is
possible that the physician is still working through his/her own adolescent difficulties. On the
other hand, the older physician may be experiencing problems with his own children and the
patient's behavior may be an unpleasant reminder of what takes place in his own home.
   Professional attitudes may be conveyed during any interaction with young patients
through verbal communication or general manner. It may be necessary to discuss areas which
are highly sensitive; previously these issues may have been shared with the parents alone,
excluding the adolescent. It is important to listen and not to appear to control the dialogue. An
assessment of a young person's powers of comprehension will help to eliminate
misunderstanding, and in any case use of technical terms and jargon is best limited to a
minimum.  It is desirable to avoid behavior which suggests a condescending or patronizing
attitude, and at the same time it is usually helpful to retain a measure of professional identity.
     of Parents
   Parents may reflect their long association with the health care system and feel they know a
great deal about their son's or daughter's condition.  Provided that the young person agrees,
parents should continue to be included in discussions of new information and further decision-
making. They may be paying medical bills, and providing board, lodging and tuition as well as
giving highly valuable general support. Even when relationships within the family are poor or
missing altogether, this bond is of central importance to the young disabled person - the family is
usually the main source of emotional and economic support.  Parents have lived through many
crises in raising a child with a disability; these have occurred at birth, at school entrance, and at
puberty in addition to the periods of stress when active surgery or other treatments were needed.
NOW the "child's" assumption of responsibility for his own medical care may be seen as
threatening, and a development for which there has been little preparation.

   The successful implementation of a training program depends upon the answers to the
following questions:


     1.   What is the objective of the training?
     2.   Has the process of transition and subsequent services been agreed
       and documented?
     3.   Who will provide the training?
     4.   Will there be joint sessions to include the Internists, Pediatricians,
      and other involved groups?
    5.   What is the curriculum?
    6.   Will there be study days, short courses or continuous in-service
      training?
    7.   Will training be conducted in their institution, community based,
      statewide, or at a regional level?
    8.   Will the training program be evaluated?
  The time has come to implement the process of transition. There will be various models
and approaches to meet the needs of existing programs. Training of staff should be discussed and
developed early so that staff who participate in this transfer of care are fully prepared.

24


Gmwing Up and Getting Medical Care:
Youth with Special Health Care Needs

CaseStudyandResponse

  To illustrate the issues related to growing up with special health care needs, this case study
was prepared. It is a composite of many young people and many conditions. The medical
condition is left unspecified, since the issues cut across diagnosis and symptomatology.

  John is a twenty one year old male who has suffered from a chronic medical condition
since he was two years old.  At that time, he had an acute onset, requiring prolonged
hospitalization. In the intervening years, he has needed numerous special treatments that have
interfered with school attendance and the normal childhood business of playing, joining sports
teams, and exploring the world. He has had several surgeries that have left large, visible scars.
John has also had some mild learning problems in school and has always been viewed as
impulsive and immature by his parents and teachers.

   John's adolescent years have been difficult for him. While he has been relatively healthy,
considering his condition, he still has been constantly reminded of his problem by regular visits to
the local tertiary hospital specialty clinic. He has no primary care physician and has not since his
problems began. In addition, he must take medication daily and cannot engage in vigorous
contact sports. Like many young people with chronic medical conditions, John's condition and the
drugs used to treat it have delayed the onset of puberty. In junior high and high school he was much
smaller than the other boys and undeveloped.  This resulted in suffering a lot of physical
intimidation from his peers (being stuffed in his locker, etc.) embarrassment in gym class and
social ostracism.  Girls were also not interested in dating a "little boy." His depression,
impulsivity and immaturity affected his behavior so that he was further ostracized. John
particularly hated when peers noticed his scars and asked about them. Sometimes he told them he
got them in a knife fight to make himself seem less vulnerable. John was actively involved in
scouting, at his fathe.`s insistence. He achieved the rank of Eagle Scout in order to please his
father.

   His parents continued to attend his doctors appointments. His caregivers felt that he was
immature and irresponsible and looked to his parents to make decisions and to ensure that he
followed their recommendations. In addition, afraid that he would not take his medicine, his
mother either made him take it in front of her or counted the pills left in the bottles. John never
asked to have the medications refilled, but his mother kept track and went to the pharmacy. John's
father felt stuck in his job, but did not change, because that would have left the family, and thus
John, uninsured for preexisting conditions for a nine month period. John's mother, after years of
devoting herself to his care, returned to work during his adolescence. She only worked part time,
however, because he needed her help with school homework. John learned to drive and got his
license, but wasn't allowed to go to many of the places his younger sister went, because his mother
told him he would get lost going someplace new. This was also the reason he was not allowed to
drive to his medical appointments alone.

   John graduated from high school and entered a state college. He had never been away
from home alone before, since in all his scouting activities his father had come along. He still
looked like a thirteen or fourteen year old. John's roommate turned out to be a good looking,
athletic boy who was very popular with the girls and had drinking parties in their room late into
the night. John needed more sleep than most people his age and this was hard on him. John was
determined to be socially accepted at college. He thus began to drink heavily and party every
night. He also began smoking cigarettes and briefly experimented with drugs. He was unable to
organize his work and was taking his medication sporadically. In part this was due to his
disorganization; in part, to his belief that he was a special case that did not need this medicine.

25


Two months later he had to go home, severely depressed and suicidal.
   Currently, John is living with his parents. There is serious conflict among them and he
longs to move out. He is working 30 to 40 hours a week at a fast food restaurant and going to the
local junior college. His grades are poor and he feels that he needs time off from school to get clear
about his goals. John is looking for a job with good health insurance benefits, because if he leaves
home and quits school he will lose his parents' insurance coverage. He does not even focus on
whether he will like the job. Unfortunately, he has not been able to keep a job long enough to
qualify for benefits. In one case, he was tired for suspicious reasons shortly before he was to go
onto the benefit package of the company.
   In the past two years, John has begun to grow and looks more his age. This has led to more
success with girls and he is dating someone special right now. He worries that he will not be able
to support her and that she may not want a long term involvement with someone with his health
problems. John looks forward to having a family of his own. He has no idea if his condition can be
inherited, since the physicians figured he was too young to worry about that issue.
   Recently John has had an exacerbation of his condition. Because the hospital clinic had
decided he should go to the adult clinic now that he was twenty-one, John met with the adult
specialist. He became quite upset when the physician told him that he would shortly need more
intense medical intervention. He was confused about what had happened and did not understand
many of the terms the physician used to explain it to him. When he asked for clarification, his
physician became angry, saying he was "playing games." John went home and asked his mother
to explain it all to him, since he hadn't really paid attention in these past few years to what the
doctors had beer saying.  He then felt very depressed, realizing that his failure to take
responsibility for his care and his not taking his medicine to "get back" at his mother had been
very self-destructive.
   John represents the challenges to us all in making growing up with special health care
needs less painful. While John and his family have many needs, the health care system can help
a great deal by rethinking how we serve these young people and their families.


   Panel Members:
Merle McPherson, M.D.
Kenneth Whittington, NLD.
Arthur Elder, 1vLD.
Hilary Millar, M.D.

  This case study presents many of the problems experienced by adolescents and their
families at the time of transition. John's small stature, delayed puberty, and immature behavior
represent difficulties above and beyond his primary medical condition.  In addition to these
adverse characteristics, John was probably acutely conscious of his inability to fit into the social
scene with his contemporaries. In their efforts to be supportive, the parents had become unduly
controlling of all of John's activities, including his medical care, and were thus delaying his
assumption of adult responsibilities even further. The health care system had failed to provide
appropriate counselling to John or his parents.

  The panel were unanimous in their response to John's predicament. They felt that in spite
of continuous monitoring at the tertiary level, John and his family lacked the presence of a
primary care physician.  Dr. Whittington commented, "The family physician should be the
quarterback of the team --- working with the entire family, while giving the appropriate treatment
or helping the family find the expertise needed: then guiding the process so that medical problems
do not `fall in the crack' of one physician thinking the other is providing certain services." Dr.
Whittington expanded the role of the primary care physician to one who fulfills critical needs such
as teaching, instruction, and listening.

  The absence of appropriate orientation and training of health care professionals involved
was evident throughout. There was no clear plan for John's transfer from the pediatric service to
adult care and in the event movement was fragmented and disorganized. There is no record of
discussions and advice about unacceptable behavior.  Decisions about John's further education
and employment appear haphazard and not part of the overall agenda for John's future. It appears
that everyone talked around John and not to him. Dr. Whittington of the American Academy of
Family Physicians remarked: "It only takes a moment of reflection to see how divisive this is for
everyone involved. I start directing my conversation to young patients, rather than to whomever
brought them, much earlier in my practice."

  The lack of early and timely financial counselling compounded this family's numerous
difficulties. Dr. McPherson of Maternal and Child Health outlined the services which should
have been provided for John and paid for through an ideal insurance scheme:
       .   Team care to cover counselling, health education, and financial advice.
       .   Case management with periodic review.
       .    Coordination of services.
       .   Medical supplies and adaptive equipment.
       .    Primary care.
       .    Therapies for rehabilitation.
       .   Coverage for excessive costs of a pre-existing condition, major medical expenses,
       and catastrophic complications.

Dr. McPherson stressed the point that these essential services must be available within the health
system, and individual young people must be protected through solid insurance plans which are
guaranteed to cover the service components which are deemed necessary. Only when the services
are accessible, and there is an adequate provision for payment, will we have a program for young
disabled people of which we can be proud.

  From the information provided it appears that staff had not been exposed to local or
national post-graduate training efforts about transition of care.  There is evidence that
communication between pediatrician and internist was sketchy and incomplete.


   Dr. Arthur B. Elster of the American Medical Association summed up the medical
deficiencies portrayed in this case history in these words:

   "The passage through adolescence is fraught with medical and social hazards.
Physicians are trained to deal with the former issues, but usually not the latter. Because of the
often co-occurrence of both medical and social disorders, physicians have been increasingly
asked by educators and society to assume a greater role in assisting adolescents with the myriad of
issues they face. Key to the management of adolescent health therefore, is having the knowledge
and ability to both deliver primary care, and to help organize care among various types of health,
social service and educational systems.

   "Adolescents who have a disability present even a greater challenge for the primary care
physician.  This is especially true when the disability is one that has required intensive
management by a tertiary care specialist. These young people not only often remain under the
medical supervision of that specialist, but they and their parents form strong emotional ties to him
and the hospital care unit. Providing primary care and organizing for the broad health needs of
young adults in this situation can be difficult.

   "The transfer of care from a pediatric to an adult medicine setting can only work when all
involved parties cooperate. The youth, their parents, the pediatric and adult services, primary care
providers and specialists must all play a role in the transition process. This process should work
best if the complex medical, emotional and social needs of youth have been properly addressed
prior to the transition."

28


Description of Models of Programs Where
Successful Transition Has Taken Place

   There are many obstacles to be overcome in the provision of painless transition of
adolescents from pediatric units or children's hospitals to an adult health service. Care in a unit
which caters only to children tends to be holistic in approach, to depend upon an interdisciplinary
team, and to emphasize developmental progress.  Adult-focused units have traditionally been
oriented toward the management of the medical condition. Although there has always been an
interest in keeping.patients out of hospital and active in the work force, knowledge of the
psychosocial and domestic background of the patient population has been less of a priority.  It is
necessary for young people to learn to manage their lives and their medical conditions with less
automatic support, but this change should come gradually and with due preparation. Young
patients must not feel abandoned; they should know that when a crisis arises, and this is not often
a life threatening occasion, there are staff around who can and will help. It is not only the
pediatric staff who can respond to phases of depression, family disputes or other practical and
theoretical problems which from time to time confront all of us. There are several programs
around the country which have taken successful steps to make an interface between the two patient
populations - these are adults and children, defined at present in chronological forms.

   In Philadelphia, patients with cystic fibrosis have been able to move from the Children's
Hospital chest clinic to the pulmonary disease section at Temple University Hospital without loss
of confidence in the process. Dr. Stanley Fiel describes how this coordination of care has been
achieved.

   Another method of sequencing pediatric and adult services was initiated in New York
City, and has been functioning well for over a decade.  Cornell University Hospital and Mount
Sinai Medical Center both concentrate on the comprehensive care of hemophiliacs in their
departments of hematology. The life span for hemophiliacs, as with those who have cystic fibrosis
has been extended to a remarkable extent. This has led to a need to graduate teenage patients to an
adult setting to make time and space for the younger new enrollees. The desirability of greater
autonomy for teenage hemophiliacs makes care in an adult setting a logical goal. Dr. Louis
Aledort has provided an account of how these two programs attained this desired result.

   Dr. Patience White presented a description of the evolution of programs for children and
young people who have rheumatoid arthritis. This new field is likely to have a shortage of medical
specialists for some time to come. Studies of this population have shown that adolescents with
Juvenile Rheumatoid Arthritis are at risk for underemployment and do not, as a rule, receive
adequate pre-vocational guidance.

   It was fortuitous that two colleagues from the Netherlands were visiting the United States at
this time, and were able to accept an invitation to speak at this conference. Their paper made a
valuable addition to the program, and served to broaden the horizon to include international
developments. Both Dr. Kuis and Dr. Sinnema have had considerable experience in the provision
of care for adolescents with long term medical conditions. Their paper emphasizes the importance
of support and encouragement in every aspect of life, and describes the stardard services to
promote independent living, continuing education, and vocational training.  A short account of
the Dutch health care system is included to brief the audience about available medical services and
the prevailing medical insurance legislation.

    TWO brief case histories are cited to illustrate some of the difficulties of transition. The
similarity between these problems in the Netherlands and those in the U.S.A. points out the
universality of the issues regardless of the country or continent involved.
   We were left with the certainty that health professionals in the Netherlands have made a
firm commitment to support disabled young people through transition. Their strategies include
social, educational, and vocational preparation to ensure that this group of young people will be


able to function according to their maximal potential in an adult society. These efforts in the
Netherlands form a part of the legislative framework for a coherent policy on the rehabilitation
and social integration of disabled people as formulated by the Council of Europe in 1988.


Transitioning of Patients from Pediatric to Adult Care
        Stanley Fiel, MD.

   As a result of improvements in medical technology, many patients with chronic pediatric
conditions are now living well into adulthood. The adult health-care system, however, has not
been ready or, in many instances, willing to take on these patients because of a lack of knowledge
of the diseases. Patients themselves have been reluctant to move to the adult health-care system
because it would mean giving up the familiar atmosphere of the pediatric setting and the
multiplicity of services that have typified pediatric care. Nonetheless, remaining in the pediatric
setting may rob these patients of their developing independence as well as deprive them of
appropriate subspecialty care by those familiar with adult medical issues.

   In our project, cystic fibrosis was the prototype disease for the transition from pediatric to
adult care. Cystic fibrosis is the most lethal genetic disease of the Caucasian population, with a
genetic rate of about 1 in 2,000 and approximately 35,000 patients in the United States. Our program
is based at a university hospital with a pediatric affiliate. Our total CF population is 350 patients;
almost one-third of these patients are 18 or older.

   The magnitude of the transition problem can be seen from the current survival data. The
median survival today is 26 years; about one-third of all patients in CF centers are adults (i.e.,
older than 18). Many internists and other adult-care practitioners are not knowledgeable in the
disease, nor do they necessarily feel an obligation to care for these patients. By choice or default,
pediatricians often remain responsible for the care of CF patients who are moving into adulthood.
Yet the pediatric health-care system by definition is not equipped to deal with the medical or
psychosocial issues involved.

   Following is a distillation of our practical experience in developing a transition program
for a group of CF pediatric patients who were ready and willing, with the proper support, to take on
adult independence and relative self-sufficiency.

   In developing a transition program, a few preliminary steps are crucial. The hospital
administration must first agree to the concept of admitting these patients to the adult hospital.
Sufficient faculty backup must be assured, and agreement of the department chairmen must be
secured so that allocation of physician time may be planned. Finally, a transition team must be
recruited and trained.

   The critical elements in making the transition work are these: (1) There must be a
practicable fiscal policy geared to admitting these patients.  (2) There must be a strong nurse
coordinator who can bridge the gap from the pediatric to the adult side. (3) There must be adequate
training of the team members, since most of the adult team will have little knowledge of the
pediatric disease. (4) The pediatricians must be properly oriented to the transition; if the pediatric
side is not completely in agreement with the program, they can undermine it by not preparing their
patients properly for the transition.

   In our project the adult team concept was a success. The patients' attitudes have been
excellent, and there have been essentially no problems in transfer of care to an adult institution.
We presently see all patients at the adult hospital. At intervals the adult team confers with the
pediatricians on those patients who are 16-18 and are getting ready for transition. Pediatricians
and internists have privileges at each other's institutions, and there is ready communication
about patient-care issues.

  Not all has been smooth sailing, however. Among the more considerable difficulties has
been the recruitment and training of a team whose members are willing to do a particular job for a
small proportion of their overall time. We have dealt with this problem by buying time from our
team's respective disciplines. Another major hurdle has been the financing of the project. In
Pennsylvania, if it were not for a state-supported "over 21" program as well as an MCH SPRANS
grant to help support our team, we would not have been able to get our project off the ground. The
hospital administration continually forces us to demonstrate that these patients are not depriving
the hospital of revenue; because a DRG-based system is used in adult hospitals, patients with
chronic disabilities give poor payer returns.

31


   There is an additional aspect to the economic problem, and that is the pediatricians
themselves. There is a general feeling among them that relinquishing the care of adult patients
will result in an unacceptable economic loss.
   When beginning a transition program, then, the financial questions to be considered may
be summarized as follows: Is there a state program of support for chronically ill patients over 21?
What is the payer mix of the population at hand? What is the DRG for the disease? What is the
length of stay and resource allocation for this patient population ? Notwithstanding the payer mix
that exists in the overall group, if the payer mix for hospitalizations (for a one-year period) and use
of resources is weighted toward the uninsured, the program may fail.
   One of our goals was to evaluate the generalizability of our demonstration project. We are
hopeful that transition programs for patients with other diseases such as chronic heart disease,
chronic renal disease, sickle cell anemia, hemophilia, and spina bifida -- will benefit from the
example of our model and the lessons we have learned.
   One of these lessons I have saved for last. It is no doubt the most important one. Simply put,
it is that a transition program can have everything in place -- the financial resources, the
institutional commitment, the interinstitutional cooperation -- and still not work if the team fails
to earn the confidence of the patients. Our own success in doing so, not without struggle, has been a
source of gratification and pride.


The Hemophilia Model
Louis Aledort, 1\zD.

   Hemophilia is a life-long, genetic, congenital disease of low density incidence. It is
characterized by bleeding which may be external or internal and may occur spontaneously or
following trauma.

   As early as the 1960's there was recognition that the provision of comprehensive care for
hemophiliacs required the services of a multidisciplinary team. The ultimate goal for the team
effort remains the-education of the patient for self advocacy.
   At this time, several other events took place concomitantly; the discovery of cryoprecipitate
was followed rapidly by the availability of lyophilized forms of Factor VIII and IX. The doses of
these life-saving blood clotting adjutants were available in a much smaller volume than for the
whole blood or plasma used previously; which enabled patients to use self-infusion methods at
home.

   The team centered around the hematologist but included colleagues from other medical
disciplines, perhaps most frequently the oral surgeon, the orthopedist, the neurologist and the
general surgeon.  Support from the non-medical disciplines included nursing staff, social
workers, and physiotherapists.  Vocational rehabilitation was increasingly necessary as life
expectancy extended. Financial counselling became a vital resource as frequently the ability to
pay for care was overtaken by the high cost of product usage to control hemorrhage.
   Initially, care for hemophiliacs was provided on a voluntary basis. There was little or no
support from the established centers, and the provision of the new blood products ran at a loss. Once
the blood products were fully available, underwriting by third party payers (with open enrollment)
or through state funding became a reasonable possibility.
   The Hemophilia Act of 1975 formulated a National Blood Policy. The Act required that a
network of interrelated centers be developed which would emphasize outreach methods,
transportation where catchment areas covered long distances, communication with primary
physicians, and utilization of community resources.
   In New York City a consortium was funded. To optimize staff and be cost effective it was
decided that Cornell would serve mainly children, and Mount Sinai would focus, as previously,
mainly on the adult hemophiliacs. This cooperative effort has worked well and served as a model.
In addition, at both centers, adult and pediatric patients are seen at the same place and by the same
staff team.

Additional progress has taken place in the last decade which includes:
.    Blood products can now be purchased by the Region which represents
   a cut in cost for the Public Health Service and Third Party Payers.
.    Increased research efforts in areas such as "Family Intervention"
   are being carried out by NHLBI.
.    Attempts to strengthen the program in underserved areas.
.   Additional staff training is taking place nationally and outside the
    United States.

   When the AIDS epidemic was recognized, hemophiliacs were at high risk for becoming
HIV positive and in some cases developing the clinical findings of the disease. It has been found
that 70% of Factor VIII deficient patients, 50% of Factor IX patients, and 20% of single donor
products have positive blood tests for AIDS. The hemophilia centers were well poised to handle this
major complication. The medical, psychosocial, educational and sexual needs and concerns of
patients were already receiving regular review by trained and empathetic staff. Therefore the
mechanism for counselling patients about this new health threat was already in place and
functioning well.

   The low density distribution of hemophilia has led to regionalization and development of
pockets of expertise. These centers have provided care and the means to support that care.
However, a series of events has occurred which threatens the existence of these programs.

33


a)   The out-of-pocket expenses caused by the cost of the new safer blood
   products have increased.
b)   The goal of chronic disease is to concentrate services into regionalized clusters.
   However, this system may bring its own problems within the regional institutions.
   Attention should be refocused on ways to reinforce hospital commitment.
i>   Major Medical lifetime caps for those who have them will be reached in lo-15 years.
   Current Medicaid payments do not recognize these new products, and the 20%
   uncovered portion reaches $12-14,000 per year. The catastrophic coverage, soon to be
   implemented, does not cover in-patient medications.
ii)   Institutions previously committed to large numbers of hemophilia patients are
   rethinking their position. DRGS do not take into account large clusters of high cost
   patients in a given hospital, and the phenomenon has occurred with the
   regionalization process. Losses on blood products for in-patients can be as high as
   $100,000 per patient for a given DRG even without an increased length of stay.
iii)  The challenge to the team of managing the previously emancipated adolescent,
   now isolated because of HIV infection, plus a burgeoning sexuality is far from met,
   and if solved will serve as a model not only for other chronic diseases, but to all
    concerned with HIV transmission.


Young People With Rheumatoid Arthritis
    Patience White, M.D.

   Juvenile Rheumatoid Arthritis is a difficult disease to diagnose and the diagnosis is made
by excluding other causes of arthritis in a child with swollen joints for longer than six weeks. The
prevalence of arthritis is 2.`2/1,000 (1) in the U.S., but many other conditions have arthritis as a
component of the illness so the prevalence of Juvenile Rheumatoid Arthritis in the U.S. is
estimated to be between 135,000 to 200,000 children. The prognosis of JRA depends on the severity of
the disease. The course of the disease for the majority of cases is one of disease activity interwoven
with periods of remission and approximately 10% go on to serious functional deterioration.
Mortality is rare and almost all children survive into adulthood. Until the early 1980's, the
majority of children with JRA were cared for by adult rheumatologists, pediatricians, or non-
rheumatologic pediatric specialists, few of which offered a team care approach. In 1976, there were
27 pediatric rheumatologists with only 17 of 128 US medical schools employing a pediatric
rheumatologist (2).

   In the early 1980's, the Bureau of Maternal and Child Health under the leadership of Dr.
Merle McPherson established at least ten Pediatric Rheumatology Comprehensive Care Centers.
By 1986, there were 103 pediatric rheumatologists with 57 medical schools employing a pediatric
rheumatologist. The establishment of these centers increased the nfimber of children correctly
diagnosed, and improved the availability of comprehensive care from a team of health care
providers. During six weeks in 1986 the seven MCH funded centers completed a database on over
1100 visits to their main and outreach clinics (3). At this time, comparisons were made between
prior diagnosis, and diagnosis at the Rheumatology Center; 20% of the children were given a
definite rheumatic diagnosis for the first time, and a further 20% of children were found to be
unaffected by connective tissue disease. Thus, over 40% of the population had a changed diagnosis
after review by a pediatric rheumatologist. Similarly, the rate of referral among this population to
occupational and physical therapists and social workers increased by 35% after assessment at a
pediatric rheumatology center.  Despite this improved care, there are not enough pediatric
rheumatologists to cover the US and its medical schools. Large areas of the US do not have a
pediatric rheumatologist and due to the small number of training programs, it would take over 10
years to train enough pediatric rheumatologists to have one in each medical school (4). Thus, these
comprehensive centers must continue to educate pediatricians, internists, family practitioners
and adult rheumatologists to improve the care of children with arthritis. Better communication
about diagnosis and comprehensive management through family centered team care must be
achieved since many children will be cared for by a non-pediatric rheumatologist in the next
decade.

   One lesson I have learned from young adolescents with juvenile arthritis came in the area
of vocational readiness. As both an internist and a pediatrician, I travel back and forth between
the adult and pediatric hospitals. In the adult clinic I would ask what jobs people were doing and in
the pediatric clinic how school was progressing.  I noted that many of the young adults with
arthritis who had graduated into my adult clinic from the pediatric clinic did not have a job and a
few had had a summer job experience. This observation led me to discover that 50 to 75% of young
adults with disabilities are jobless. Of those not working, sixty-seven percent wanted to work and
of those working seventy-five percent were working part-time which often resulted in poor health
care benefits. In the United States, the availability of prevocational programs is the responsibility
of the Special Education Department;  however, further investigation revealed the following
information:
1.   Only 21% of 300,000 students leaving special education programs become fully employed.
2.   Only 31% of those in special education have vocational planning as part of their
   individual education plan.

3.

The high school dropout rate of those in special education is five times greater than those in
regular education.

35


4.

5.

Most federally funded vocational rehabilitation programs will not provide services to
young people under 18 years of age.
Most children with disabilities are not in special education and therefore receive no
vocational counseling. Often these children are away from school seeing their physicians
during vocational or home economics classes so they will not miss any major classes such
as math or english.
Thus through funding by the Division of Maternal and Child health, an Adolescent

Employment Readiness Center at Children's Hospital National Medical Center in Washington,
D.C. was developed where prevocational counseling is offered within a tertiary pediatric hospital
to all children with a chronic physical disability.  The program offers job exploration, job
readiness sessions, and help in obtaining summer job experiences.  Educational sessions are
offered such as a Parent and Adolescent Vocational Day and an advocacy training course for
parents. There is a research component of the study which is evaluating the efficacy of the
program. As part of the research over 60 chronically disabled adolescents have completed the
nationally normed, age-matched, Career Maturity Inventory (5) which categorizes attitudes about
work. To date children with neurologic conditions such as spina bifida and epilepsy have mean
scores in the 30th percentile, those with non-neurologic conditions such as juvenile arthritis and
cystic fibrosis have mean scores in the 40th percentile, both were below the national norm of the
50th percentile. These two groups, the neurologic and non neurologic, were similar in age, sex,
socioeconomic and functional status and work experience. A very surprising difference was the
age at which the parents felt their children would be ready to work; for the neurologic group - age
17, for the non neurologic group - age 14. Thus parental expectations may play a major role in the
career maturity of children with chronic physical disabilities (6).

   There are many lessons to be learned from the development of the new field of pediatric
rheumatology:  foremost the shortage of specialists in this field necessitates a high level of
collaboration between pediatricians, adult rheumatologists and other specialists at least during
the next decade; also, a new area of career immaturity has been identified, and this will require
careful consideration by all who care for young people with chronic disabilities if they are to be
productive contributors to society.

References

1.

2.
3.
4.

5.

6.

Prevalence of Chronic Skin and Musculoskeletal Conditions. The United States Health
Interview Study 1976 Series 10, No. 124 DHSW Pub. No (PHA) 79-1552.
Cassidy, J. Beurn. Clin. N. Amer, 13: 169, 1987.
Lovell, D. and Levinson, J. mand 30: S35,1987.
Athreya, B. A Report from the Education Subcommittee to the American Juvenile Arthritis
Organization. Atlanta, Georgia, 1988.
Crites, Jo. Career Matur'tv Inventorv Administration and Use Manual, McGraw-Hill
Monterey, California, 197:.
White, P., et al. Arthritis 32: S28, 1989.


Issues of Adolescent Transition in the Netherlands

Wietse Kuis, M.D.
Gerben Sinnema, Ph.D.

   In the Dutch Health Care System, the general practitioner (GP) plays an essential role.
Every Dutch resident has his/her own GP and referrals to the second or third level of health care
can only be made by the GP. In Table 1 an overview of health care facilities is presented, as well
as a list of special schools and facilities like home adjustments. Table 2 shows the three levels of
care and their benefits. In the ideal health care system there exists a perfect coordination between
these three levels of care. For chronic diseases, referrals to the second or third level should not be
delayed and for rare diseases multidisciplinary teams in university (children's) hospitals
deliver comprehensive care for these children with longterm medical conditions. However, in the
Dutch health care system the coordination between the different levels of care is often deficient
(Table 3).

   A crucial issue is the financing of the health care system. The costs of health care are
about 8.6% of the gross national product. As a principle everybody is ensured. Employees with an
income below $20,000 are ensured under the Sickness Benefits Act (1964) and are entitled to get
prescriptions, treatment and nursing in a hospital, a stay in a rehabilitation center or other
medical institution for a maximum period of 52 weeks.  Included also are special services like
physical therapy, speech and hearing therapy. Persons with an income over $20,000 need a private
ensurance.

   Besides the Sickness Benefits Funds and the private insurances, all residents in the
Netherlands, regardless of their age or social status, are covered by the Exceptional Medical
Expenses Insurance Act. Payments are made under the act in cases where lengthy, costly,
intensive or other special treatment, or nursing care are necessary for long-term patients,
disabled persons, mentally disturbed persons, elderly individuals who are physically or mentally
ill and persons with chronic diseases like cancer, rheumatism, etc.  This act, together with
another act - the General Disablement Benefits Act - has stimulated advances in medical and
social rehabilitation of the disabled.

     DifCcuIties in the Transition of Chronically Ill Youth to Adult Health Care
   Mortality rates for many chronic pediatric conditions have decreased because of improved
care.  As a result, many patients with chronic pediatric conditions are now living into adulthood.
For many of these chronic diseases multidisciplinary (highly specialized) teams have been
formed in (university) pediatric centers. The transition of patients from this type of care to the
adult health care system is frequently problematic. To illustrate this, two examples are given.
   Patient I, Frans, a boy born 03-23-71 has a crippling form of Juvenile Chronic Arthritis
since 18 months of age and was referred to our hospital at the age of 14 years. He was completely
wheelchair-dependent and there was still a persistent, polyarticular arthritis. A
multidisciplinary team consisting of pediatricians, physical therapists, an orthopedic surgeon
and a clinical psychologist developed a treatment plan.  Drug treatment, physical therapy and
orthopedic operations including total hip replacement, were necessary to improve his condition.
In the beginning, he was very depressed and needed a lot of support to undergo the necessary
operations and the physical therapy thereafter.  He is now seventeen and usually of an even
temperament. Although his clinical condition is much better (ability to walk), he still has to
undergo some major surgical procedures.  He remains a rather dependent boy and has not yet
finished his schooling. In the near future he will continue to need much support.
   The decision to refer him to an adult rheumatologist is difficult to make because:
   there is a strong emotional bond between the boy (as well as his parents) and the Pediatric
   multidisciplinary team.
   he still needs psychosocial support and even in the very developed adult centers there is a
   paucity of caregivers.
   he has not finished his schooling; in adult centers there are no school facilities.

37


general practitioner

local pediatrician

(university) pediatric centers

other health care

facilities: -    Physical Therapy
          Home Care: Cross organization
          Psychosocial care:  RIAGG (institute for ambulatory
                       mental health care>
          Special Institutes: -    revalidation centers
                        institutes for handicapped children
                             institutes for blind children
                        institutes for mentally handicapped
                             children
"special" sshools, e.g. for deaf children, children with learning disabilities
special facilities, e.g. home adjustments (elevator, bath, etc.)

General practitioner: -

"generalist"
   knowledge of child/family
   knowledge of local circumstances

           .
$emnd level,     Local pediatrician: -

specialized
    direct contact with first level
   in the neighborhood of the patient

Third level;

(University) pediatric
center:

knowledge of rare pediatric disorders
multidisciplinary care

General practitioner: delay in diagnosis
Local pediatrician:  delay in diagnosis
          delay in adequate treatment
University center:   distance
          expensive medical care
          deficient cooperation with level I and II

38


   So, we still hesitate to refer this boy to an adult center although in some aspects he has
grown up and no longer fits into a pediatric setting.
   Patient II, Jacqueline, a girl born 12-31-68, has a seropositive polyarticular juvenile
chronic arthritis. At the age of fourteen, she was completely wheelchair-dependent and after very
intensive treatment for years we succeeded in getting her in a rather favorable clinical condition.
One of the problems with this girl was that she and her family were strongly focused on her
physical well-being. There was hardly any time and energy for her development of independence
and for her educational career. Her emotional status, however, improved considerably: from a
socially isolated and extremely depressed girl with a low self-esteem and a negative body image,
she developed into a teenager with a re-established trust in people, with quite a lot of fighting spirit
and an improved body image. She is volunteering at a kindergarten now, and preparing herself
for adult education.  However, these developmental gains are rather unstable. Jacqueline
strongly feels she still cannot cope without the support of the members of the pediatric team.
   Although in this case there are no plans for major surgical interventions in the near
future, she still needs a lot of psychosocial support. One of the possibilities for this girl is to place
her in one of the special vocational training centers for adolescents with chronic diseases or
disabilities and, with regard to the medical care, refer her to an adult center. However, until now
she has refused transition to adult health care.
   For young people like Frans and Jacqueline a successful transition from adolescence to
adulthood implies that they "will take as active a part as possible...in every sphere of life...and
will achieve full development within their possibilities" (Council of Europe, 1988, (1)). This broad
objective is based on the idea that disabled people are part of the community and must be recognized
and accepted as full members. It is a fundamental issue in the Dutch federal policy that disabled
people must be enabled to use as much as possible the general facilities and arrangements open to
the entire public. In addition, however, special facilities and services have been created in order to
meet the needs of disabled youth and young adults who face the difficult task of getting "a start in
society".  These facilities and services focus on independent living, education, vocational
training, employment, and social integration.
   Independent living. Some 30 years ago - on a one night TV charity show - the Dutch people
raised the money to build a village in the woods where physically handicapped people could live on
their own - together, but apart from the community of "healthy people". Nowadays, the philosophy
has fundamentally changed: a physical handicap as such may never be an impediment to live in
the community of one's own choice.  Dwelling adaptation on an individual basis is financially
supported by local or federal authorities. Administrative regulations are sometimes complicated
and time-consuming, but in the end the money will always be provided. In addition to the
possibility of individual dwelling adaptation, there are specific housing projects for (young) people
with serious physical handicaps. Such a project ("cluster") consists of 12 to 15 houses with an
assistance unit in the immediate vicinity.  Assistance is supplied for daily functions, such as
provision of meals, bathing, and dressing. In June 198'7, 2'7 cluster projects were in operation and
10 projects were still under construction.
   Education. In general, chronically ill or handicapped adolescents are supported to stay in
the mainstream of regular education as long as possible. Secondary schools for special education
are divided into fourteen different types, according to the nature of the disabilities. Special
education is supplied for:
   deaf youngsters;
   adolescents who are hard-of-hearing;
   adolescents with serious speech troubles;
   blind youngsters;
   adolescents with poor eyesight;
   physically disabled youngsters;
   adolescents who are in a hnspital for a period longer than two weeks;
   youngsters with chronic diseases;
   slow learning adolescents;
   adolescents with normal intelligence who have learning difficulties and


   behavioral problems;
   adolescents with severe behavioral problems;
   multiply disabled children
   adolescents who are residents of specific institutes.
Local authorities are obliged to take care of transport of pupils to school. Before admittance to a
special school, a thorough physical, psychological, social and educational assessment is made.
However, there are no (official) specific services for long-term educational counseling. The
privately funded Foundation for Education and Disability fills in a part of this gap.
   Vocational training. Schools for special education generally try to prepare their pupils for
a place in society. Often, however, this turns out to be insufficient: the individual development of
independence may be delayed, and the labour market is not awaiting youngsters with special
health care needs. There are several facilities for support:
1.   Rehabilitation centers and hospitals frequently have social services to serve
   specific vocational training opportunities.
2.   The privately funded Organization for Chronically Sick Children andYoung People gives
   personal guidance and informs schools or employers about the potentials and constraints
   of the young people in question.
3.   Regular employment offices have special placement consultants who can negotiate
   between the handicapped young adult and a possible employer.
4.   In institutes for vocational training and rehabilitation young people can live for one to two
   years to acquire special skills.  In "Hoensbroeck" 150 trainees, aged 18-40 years, can
    choose between courses on fine metal, electronics, technical design and administration.
   In "Werkenrode" 30 trainees, aged 16-25 years, can choose between printing trade
    administration and horticulture.  Of course, physical and psychosocial treatment is
   supplied as an integral part of the vocational training.
   Employment. Rates of unemployment are regrettably high in the Netherlands. In the total
population of young adults aged 19-23 years 26% are unemployed. For young adults with a
disability the estimates are as high as 65-80%.  Counseling by a special placement consultant
proves to be effective, as 46% of the young adults can be provided a job. After vocational training in
a center like "Hoensbroeck" or "Werkenrode", even 67-72% of the young adults get employed.
   Because of the extreme difficulties facing disabled (young) people to conquer or to keep a
place on the labour market, politicians are now discussing the moral or legal obligation for
employers to have a fixed percentage of disabled people in their organizations. Government,
employers and trade-unions try to reach "gentlemen's agreements" as they fear that employment
enforced by law would not work out. Well-to-do companies might prefer to pay the penalties for
non compliance.  For the different branches of industry and government services, specific
regulations about quota (3-7%) and about financial compensations are under way now.
   Social rehabilitation and integration. In the realm of social integration the role of lay
organizations, such as associations for people with a particular disease or handicap, is becoming
more and more important.  These associations offer information to patients, parents, schools,
employers and the public in general, and often provide networks of social support. Some patient
organizations are quite successful as political pressure-groups. Basic issues in the process of
social integration are autonomy and independence, mobility, accessibility of public buildings,
means of transport and communication facilities, and opportunities for leisure activities and
holidays.
   In the last few years, young people (ages 15-30 years) with a visible or an invisible
handicap have their own association ("Jopla") to fight jointly for their legitimate rights.
   A European strategy. The Netherlands are a part of the European Community. The
Council of Europe (the European parliament) established on May 5th 1949, has today twenty-one
member states. Until now, thirteen states have agreed upon a legislative framework for a coherent
policy on the rehabilitation and social integration of disabled people (1. Council of Europe, 1988).
These states are Austria, Belgium, Cyprus, France, Federal Republic of Germany, Italy,
Luxembourg, the Netherlands, Portugal, United Kingdom of Great Britain and Northern Ireland,
Spain, Sweden and Switzerland. There is still a long way to go and surely the process is going on


often too slowly, but the forces to join hands in giving disabled young people the place in society
they're entitled to, can never be stopped.

Reference

1.

Council of Europe. Legislation on the rehabilitation of disabled people in thirteen member
states of the Council of Europe. Strasbourg, 1988.

41


   Discussion groups organized within the conference structure were unanimous that further
progress should relate to the following issues:
1.   The development of generic guidelines for the transition of adolescents from pediatric to
    adult care.
2.   The improvement and refinement of existing models of care.
3.   The extension and upgrading of financial support systems for medical care
   for disabled youth.
4.   The strengthening of family empowerment and promotion of liaisons between self-help
   groups and organized medicine.
5.   Training and medical education for staff, adolescents' families, and others.
6.   Research to identify information about adolescent development and how this may be
   applied to the provision of health care at the time of transition.
DeveloDment of Generic Guld&es for
                         . .      Tr    . .
                         ansltlon
   The purpose of developing national guidelines for the medical care of adolescents during
transition is to improve the quality of individual care at this critical time and for the future.
   These guidelines will be drafted collaboratively by a small group of attendees from the
Jekyll Island Conference. The material will be collated by members of the National Center for
Networking Community Based Services at Georgetown University Child Development Center and
reviewed subsequently by a wider group of experts. The publication will be distributed nationwide
to relevant agencies, organizations, and individuals. It is anticipated that this process will take at
least one calendar year.
   The substance of the guidelines will include the following:
1.   To describe the range and scope of services to be available through each program.
2.   To provide an outline for a summary of past events and a clear method for identification of
   current problems in all aspects of medical and psychosocial well-being.
3.   To suggest an individual plan for future medical care.
4.   To offer guidance for the assessment of and readiness for transition based on the
   interpretation of developmental problems.
5.   To emphasize the importance of coordinated care and provide specific suggestions of
    effective methods.
6.   To present the available options for financing services and to outline a systematic
   approach for exploring all possible alternatives.
7.   To describe the health care team giving their role and function, for the benefit of families
    and trainees.
   It is anticipated that the guidelines would serve an important purpose in general situations
beyond direct patient care and programmatic expansion. These would include:
1.   Briefing patients, families, and the community about services.
2.    Providing a baseline data for reimbursement.
3.    Training health professionals and others.
4.   Addressing research in areas where there is a lack of knowledge or an inadequate
   interpretation of existing data.
5.   Producing new checklists, forms, and records to improve clinical documentation.
6.   Forming a springboard for a textbook on transition.
7.   Subsequent development of guidelines for specific medical conditions.
   There is general concern about the inadequacy of the present reimbursement system for
young people with longterm medical conditions.  There will be three main approaches to this
major issue:
     A.   Benefit Design
          At present there is no satisfactory definition of need. This definition will
       be formulated from the generic guidelines. Benefits should be expanded to include


B.

C.

multiple providers, both specialist services and care from members of a core team.
All components of broadly prescribed treatment should be covered financially,
possibly through a consensus methodology.
   A paper will be requested to elaborate upon this theme.
essto Fln~DDort
   This is a national problem which will eventually require a national
solution. The present mandate is to request each state to articulate a plan for all
individuals in need of special services. Also, each state will analyze its state plan
to know the numbers of the special needs and uninsured populations. Resources to
provide individual financial counselling for the special needs population would
fill a wide gap. All states will be asked to work towards open enrollment without
exclusion- of those with pre-existing conditions.
   Specifically, a pamphlet designed for families that describes the optional
routes for acquiring medical insurance for disabled adolescents will be
commissioned.                 . .
Development of a Fiw

       This group will be convened by the Surgeon General to focus on funding
    initiatives for programs dealing with transition and the continued care of young
    people. Directions for funding will be in keeping with emerging fiscal structures.
       The group will be composed of representatives from a wide range of
    professional and commercial organizations.  The selection of members will be
    made on the basis of their interest in adolescents and their expertise in the
    financing of medical care.
11v Emnowermc&

   In order to promote a stronger family voice on behalf of young people with handicaps it has
been recommended that family centered care should become a more prominent focus. MCH has
beeen asked to work closely with the self-help groups' consortium to develop teaching resources for
young patients and their families.
       Me-

   To raise the level of consciousness at all levels, conference attendees are asked directly to
provide information about transition through professional newsletters and journals, and the
public media. Groups to be approached include:
          all medical specialties

colleagues in education, social services and rehabilitation
self help organizations
patients and their families

   More detailed information is to be conveyed through continued medical information
programs, by the presentation of papers and the organization of workshops at the meetings of
professional societies.

   Professional education programs should be encouraged to include sessions devoted to the
health care delivery system and legislative issues and to encourage providers to consider a more
comprehensive approach to health care. Although the medical school curriculum has become
congested with competing priorities, residents would benefit from an exposure to all issues of
transition. Attendees at the conference are asked to negotiate these arrangements with their local
hospital or university.

   Although considerable information is available, much data has not been fully analyzed or
made applicable for use in existing situations. Universities will be asked to undertake further
work to make existing studies of greater practical value.

43


   New areas for investigation include the following:
       .   To design a tool for measuring functional disabilities.
       .    To develop models to define disability in a socioeconomic context.
       .    To initiate an information bank defined by disease entity.
       .   To study the effect of several disabilities on growth and development.
       .   To study the assessment process in relation to readiness for transition.
   The four discussion groups reported their recommendations for action with marked
unanimity. The development of national guidelines for transition and subsequent care was
considered to be of prime importance for the planning and implementation of improved medical
care for disabled adolescents. Restructuring of the financial support system will be based on the
range and scope of services as described in the guidelines.  Promotion of the medical needs of
young people, and their families, should be encouraged so that awareness of the possible gaps in
services is heightened among health professionals, social agencies, and in the community.
Relevant training for caregivers in Pediatrics and in Adult Health Care must include the issues
of transition.  Research is to be stimulated particularly in areas relating to the timing of
transition and the effect of a disabling condition upon an individuals' psychosocial development.
The groups convened were in agreement that these topics should be addressed first, but there was no
intent to exclude other areas of concern and interest.

44


Surgeon General's Closing Remarks

  The Surgeon General's workshops have been the mechanisms that I have used for the past
eight years to sort out problems, to initiate or expand programs, and also to make policy. That
policy is sometimes made by suasion, sometimes by public demand, and sometimes by alerting the
people responsible.  This workshop is different. First of all, I think some of you came here
unaware or at least unconvinced about the problem we have been discussing. You can imagine
how true that must be in the health care system at large. Another nice thing about this meeting is
that very few, if any, of you came with a personal agenda to promote.

  We are only beginning to be in a position to advise other people about the mechanism and
management of transition, although we have been providing programs for the comprehensive
health care of special needs children for several decades.

  One of the happy things that I see in the future is that the Center for Disease Control, which
has previously confined its activities to acute illness, has now established a division of
surveillance of chronic disease, so that I suspect, although they cannot accumulate those data
immediately, in a few years time much more solid information will be available about the young
disabled population.

  In the Fall of 1987, when on the campus of UCLA, I conducted a Surgeon General's
Workshop on self-h-and mu-. This movement arose because of the dissatisfaction of
parents over certain aspects of health care delivery. This became a public movement arising from
a perceived deficiency; but this was followed by unresolved turf problems between those who are
engaged in self-help and those who deliver health care in a traditional way. The self-help groups
tend to be somewhat hostile toward organized medicine, and doctors, particularly, appear to be
suspicious of the more informal support groups. In spite of these attitudes, self-help groups have
grown extensively and are also able to be very effective. I refer to groups such as Alcoholics
Anonymous, mastectomy support groups, Dieters Anonymous, Gamblers Anonymous, My Sister's
Place, among many others. Fortunately, for purposes of our concern, there is a self-help group for
most diagnoses that we consider part of our purview. Conditions include Spina Bifida, Cerebral
Palsy, Epilepsy, and some of the learning disabilities to name a few from the lengthy list and
organizations. There are potential dangers associated with the self-help group; this form of care
could become a hiding place for quacks and charlatans, and this could keep some people away
from the mainstream of conventional health care. However, having worked with these groups
now for more than three years, I think that eventually self-help will be the "other" health system in
this country and that it will accept the burden of disease prevention and of health promotion in the
United States. If a partnership between the self-help groups and the doctors could be engineered,
and the present hostility and suspicion allowed to dissipate, the result would be an outstanding
combination of supportive and preventive care with diagnostic and therapeutic management. I
believe there is a very important role for self help in the management of transitional care.  I will
direct appropriate individuals in my department to be a liaison between the Maternal and Child
Health Office and the self-help leadership, and will keep you informed about developments.

   You were invited here because of your perceived expertise and we interpret your presence
as a commitment to future interest in this concern. Therefore, I suggest that you take the findings
and the discussion from this conference back with you; that you report your participation to the
newsletter or newspaper of whatever organization you represent; that you start some thinking at
home by perhaps doing ward rounds, having interdisciplinary and bi-lateral conferences,
presenting a paper on the plenary session of your national and/or state society meetings, and
making opportunities for local promotion of the concept of transition. I would also suggest that you
introduce transition services and concerns on your society's and your hospital's continuing
education programs as applicable to appropriate specialities, but particularly to associated non-
medical groups, which are sometimes left out of these deliberations.  As your information
improves, and you have data on which you can rely, I would hope that you would write and that you
would publish.

45


   It would be well, I think, to recall the remarks of Dr. Whittington yesterday: "You will
succeed, I am convinced, faster and better if you abandon all thoughts of teaching a new subject."
His alternative approach was "start off by complimenting the audience on their expertise, and then
suggest a slight change in their focus to meet this particular set of circumstances."

   Training was mentioned; my experience has been that it is extraordinarily difficult to
enter the curriculum of any school.  For many students, I think discussion of transition from
pediatric to adult care will appear abstruse. Therefore, I believe that this subject is best included in
the education of house officers and as a part of the continuing education of graduate physicians.

   Several references have been made to family issues. I believe that there is a clear need for
strategies to develop family coalitions and to teach families to be managers of the care of their own
children. I suggest that first we explore the self-help connections to which reference has already
been made.  Secondly, I would like to ask Maternal and Child Health to consult with the
Association for Care of Children's Health to explore the family coalition concept with a possible
focus on transition. And then, depending on how those two approaches develop - coalition and
exploration - Maternal and Child Health might consider convening a small group of participants
of this meeting and plan further.

   The need for guidelines has been mentioned from the very beginning of this meeting. I
will address two areas - those covering care and services and the financial guidelines. I think
that you have reached a rather broad consensus on this topic and I would like to ask the organizers
of this meeting if they would implement the following tasks. Initially, they should develop a plan
and a timetable for the publication of a document containing generic guidelines for transition;
this would include a clarification of the issues enunciated here, a plan for individual services, an
outline of the programatic scope and an assessment tool to gauge developmental readiness for
transition from pediatric to adult care. There should be a description of professional functions
and the parts to be played by the patient, his family, and the community. Alternative methods for
coordination of all of the above will be suggested. Such a document should be used in a variety of
ways, including informational purposes, training, and for the future development of diagnostic
specific guidance. Certainly, the document should be used to change the basis of reimbursement
and it would be helpful to anybody designing a research project in this field. The task would
amount to a year's work involving many who attend this meeting, and other specialists, and
experts for review purposes.

   Peggy McManus showed us with great clarity the barrier-ridden process of entering a
financial system to provide care for special needs children, especially at this transitional time.
In this regard, I would like to ask that Maternal and Child Health work with her and others to
establish guidance for parents and professionals, in chart form, that should trigger a financial
review by families at critical times in the life of their child, determined chronologically,
developmentally, or by events in the medical history.  There should be an evaluation of
alternatives pointing out the pitfalls, the Catch-22 situations, and the prospect for success so that we
do not raise expectations unrealistically. I would suggest that MCH appoint a task force to address
such changes and to propose an ideal model to be used as a guide for financing the care of special
needs children. The health care system is due for an overhaul. This is unlikely to happen
immediately but I do think that piecemeal benefits should not be rejected but grasped and
considered as stepping stones for the future.

   When these two sets of guidelines have been prepared it will be time to reconvene a group
such as this where triumphs and failures may be shared, leading to regrouping and further
progress. Most importantly, out of these experiences will come a clarification of resources needed
in terms of personnel, services, programs, money, and research.

   Turning now, almost in conclusion, to research.  New initiatives must be devised. We
need reliable methods for the comparison of service models; we must be able to evaluate the level of
satisfaction for staff and patients; and we should seek new data on cost-effectiveness. The trend of
medical costs must be under constant review. Legislators are more likely to respond if they can
see a goal and are given some projections about numbers under consideration and dollars
involved.

46


   A suggestion was made to get universities more involved in this type of research: data
analysis, gathering of disability information, finding functional definitions for disability,
developing a diagnostic-oriented information bank, and also a national program directory.
Those are all very important suggestions and I think the university involvement must be
stimulated by knowledgeable individuals - such as yourselves. The people that you convert to your
way of thinking will also be important allies in the future.  One of the best ways to involve
university programs is to approach interested individuals who are on the staffs of university-
affiliated children's hospitals.

   An additional area of needed research lies in the field of human development. We have
not determined landmarks for all phases of human development, and we don't know how these
milestones are altered by the presence of a chronic illness.  I will convey your concerns to the
Director of the National Institute of Child Health and Human Development and discuss
possibilities for inviting proposals to address these developmental issues, from which usable data
would become available.

   And then, finally, there is the action that we will take after we leave this conference. I will
distribute, with appropriate covering letters, the proceedings of this workshop to appropriate
individuals and groups. This list is not at all complete but I will start with the Secretary of HHS,
the Undersecretary of the same Cabinet Department, the Assistant Secretary for Health, the
Administrator of the Health Care Financing Administration, and the Commissioner of the Social
Security Administration. I will see that the chief executive offices of appropriate companies
involved in the health insurance industry get this packet, as well as members of the House and
Senate who are involved with committees that deal with health and health appropriations. The
proceedings should go to the directors of adolescent services in the states and to the chief executive
offices of the many advocacy groups around the country, known for their interest in the disabled.

   In conclusion, let me say that my response to your discussions and comments merely
highlights some of your findings.  We will review all you have said, especially the call for action.
We will amplify this response where necessary and where possible. Most importantly, we will
keep you informed, but we also want you to keep us informed. We would like copies of your
publications and information about your presentations to professional and other groups. If we
have this material, we will see that it is circulated widely.

   The staff from Maternal and Child Health and Georgetown University join with US to
express our thanks and appreciation for your presence here. It has been a good workshop, and we
appear to be off to a good start. I am hopeful that in about two years time, we shall be impressed by
the accomplishments that have been achieved, and the progress made will show tangible results of
our conference here in the Spring of 1989.

47


Louis Aledort, MD.
Professor of Medicine
Department of Medicine
Mount Sinai School of Medicine
1 Gustave Levy Place
New York, NY 10029
(212) 241-7971

Participant List

"Growing Up and Getting Medical Care:
Youth with Special Health Care Needs"

C. Everett Koop, MD., D.Sc.
   Surgeon General
U.S. Public Health Service
Room 1867 Parklawn Building
   5600 Fishers Lane
  Rockville, MD 20857

Glen F. Aukerman, MD.
Chairman of the Board
American Academy of Family
Physicians
Drawer "A"
Jackson Center, OH 45334
(513) 596-6123

Judith S. Boggs
Special Assistant to the Administrator
Health Care Financing Administration
200 Independence Avenue, SW
Washington, DC 20201
(202) 245-8502

Charles P. Duvall, M.D.
President-Elect, American Society
  of Internal Medicine
3301 New Mexico Avenue, NW
Washington, DC 200 16
(202) 362-4467

Betsy Anderson
Director, Collaboration among
Parents and Health Professionals
Federation for Children with Special
  Needs
312 Stuart Street
Boston, MA 02116
(617) 482-2915

Robert Blum, MD.
Associate Professor of Pediatrics
Director, Adolescent Health Program
University of Minnesota
NCYD, Box 409 UMHC
Minneapolis, MN 55455
(6 12)626-2820

Suzanne M. Bronheim, Ph.D.
Associate Professor of Pediatrics
Georgetown Univ. Child Development
  Center
3800 Reservoir Road, NW
Washington, DC 20007-2 197
(202) 687-8635

Karen H. Early
Issues Analysis Manager
Pennsylvania Blue Shield
18 Center Street
Camp Hill, PA 17089
(7 17) 975-5082


Arthur B. Elster, MD.
Department of Adolescent Health
American Medical Association
535 North Dearborn Street
Chicago, IL 60610
(3 12) 645-5000

Dale Garell, M.D.
Medical Director
California Children`s Services
2064 Marengo Street
Los Angeles, CA 90033
(213) 226-2405

George Grode
Senior Vice President and Special
Assistant to the President
Blue Shield of Pennsylvania
1800 Center Street
Camp Hill, PA 17011
(717) 763-3151

Carol Frick Hoover
RD#l, Box 1
Langhorne, PA 19047
(215)752-3935

Vince Hutchins, M.D.
Deputy Director
Bureau of Maternal and Child Health

and Resources Development
Office of Maternal and Child Health
5600 Fishers Lane
Rockville, MD 20857
(301) 443-2170

Stanley Fiel, M.D.
Associate Chief, Pulmonary Disease
Section
Director, Adult Cystic Fibrosis Prog.
Temple Univ. Health Sciences Center
3401 North Broad Street
Philadelphia, PA 19140
(215) 221-4676

Lynn Gerber, MD.
National Institutes of Health
Building 10, Room 6S235
9000 Rockville Pike
Bethesda, MD 20892
(301) 496-4733

Pat Hackett-Waters, MEd.
CADD Program Manager
6 130 Peregine Avenue
Orlando, FL 32819
(407) 299-5000

Marvin Hoover
RD#l, Box 1
Langhorne, PA 19047
(2 15) 752-3935

Renee R. Jenkins, MD.
Associate Professor
Department of Pediatrics and Child
Health
Director, Adolescent Medicine
Howard University Hospital
2041 Georgia Avenue, NW
Washington, DC 20060
(202) 865-1595


Anne Keller, MD.
Acting Director
Division of School Health
Pennsylvania Department of Health
Box 90
Harrisburg, PA 17 108
(717) 787-2390

Phyllis R. Magrab, Ph.D.
Georgetown University Medical Center
Child Development Center
3800 Reservoir Rd., NW
CG-52 Bles Building
Washington, DC 20007-2 197
(202) 687-8837

Newton C. McCullough, III, MD.
Director of Medical Affairs
Shriners Hospital for Crippled
Children
2900 Rocky Point Drive
Tampa, FL 33607
(8 13) 8852575

Merle McPherson, MD.
Director, Division of Services for

Children with Special Health Needs
Bureau of Maternal and Child Health
and Resources Development
Room 6-40 Parklawn
5600 Fishers Lane
Rockville, MD 20857
(301) 443-2350

Mittie Moffett, R.N., M.S.N.
Chief, Perinatal and Special Programs
1311 Winewood Blvd.
Tallahassee, FL 32301
(904) 487-2690

Wietse Kuis, MD.
Wilhelmina Kinderziekenhuis
Nieuwe Gracht 137
3512 LK, Utrecht
Netherlands

Carlos J.M. Martini, MD.
Vice President, Medical Education
American Medical Association
535 North Dearborn Street
Chicago, IL 60610
(312) 645-4804

Peggy McManus
President
McManus Health Policy, Inc.
4801 Massachusetts Avenue, NW
Suite 400
Washington, DC 20016
(202) 895-l 580

Hilary Millar, M.D.
4701 Willard Avenue
Chevy Chase, MD 208 15
(301) 907-8956

Richard Nelson, M.D.
Director
Iowa Child Health Specialty Clinic
University of Iowa
Iowa City, IA 52242
(319) 356-l 118


James G. Nuckolls, MD.
President, American Society of
  Internal Medicine
199 Hospital Drive, Suite 5
Galax, VA 24333
(703) 236-6 136

Barbara S. Ritchen, R.N., MA.
Director of Adolescent Health
Colorado Department of Health
4210 East 1 lth Avenue
Denver, CO 80220
(303) 331-8372

Daniel Schidlow, MD.
Chief, Section of Pulmonology
St. Christophers Hospital for Children
5th and Lehigh Avenues
Philadelphia, PA 19 133
(215) 427-5183

Gerben Sinnema, Ph.D.
Wilhelmina Kinderziekenhuis
. Nieuwe Gracht 137
3512 LK, Utrecht
Netherlands

John M. Tudor, Jr., M.D.
1309 Federal Heights Drive
Salt Lake City, UT 84103
(801) 531-8634

Patience White, MD.
Childrens Hospital
Director, Division of Rheumatology
111 Michigan Avenue, NW
Washington, DC 20010
(202)745-5483

James F. Quilty, MD.
Chief, Division of Maternal and
  Child Health
State Department of Health
246 North High Street
Columbus, OH 43266-O 118
(614) 466-3263

Marilyn C. Savedra, D.N.S.
Associate Professor, UCSF
1411 Sacramento Street
Berkley, CA 94702
(4 15) 476-4555

Ceci Shapland
PACER Center
4826 Chicago Avenue, South
Minneapolis, MN 55417
(6 12) 827-2966

Margaret Stineman, MD.
Clinical Scholar
Apt. 1604
2400 Chestnut Street
Philadelphia, PA 19103
(215) 8984318

Margaret A. Van Amringe
Deputy Executive Secretariat and
Legislative Fellow to
Senator George A. Mitchell
176 Senate Russell Office Building
Washington, DC 205 10
(202) 224-5344

Kenneth W. Whittington, MD.
7330 NW 23rd
Bethany, OK 73008
(405) 789-4 150