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

1


      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

3


   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.

4


   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.

6


   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

7


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.

8


   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.

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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.

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