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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 young adult 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.
Health care Providers 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.
Provision of services - 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
bc the financial capability to pay for this care. The young person
who reaches the age of legal independence, but 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.
Training of staff - 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.
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.
Introductory Remarks by
C. Everett Koop, M.D.
Surgeon General
U.S. Public Health Service
Department of Health and Human 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 healthcare
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 specialties.
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 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 very proprietary. I was aware of the situation and
tried to maintain a reasonable balance. How much more difficult for
thc 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.
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 for 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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