INTRODUCTION

The health of most American children has improved remarkably over the
past two decades. Low-birth-weight or otherwise vulnerable newborns who
remain in the hospital long after birth have benefited from increasingly so-
phisticated technology. The technology, often requiring extended hospital
care, has an unwanted side effect of subjecting these infants to abnormal
environmental conditions, including separation from parents. The opportu-
nity for close parent-infant contact is limited, and parents may have prob-
lems relating to the child in a home environment.

Resources within the community have not been developed, or if present,
are not organized to encourage early discharge and to assist the family in
aiding their child. Those newborns with their disabilities and continuing
needs are dramatic examples of a more pervasive problem. Of the unmet
health care needs of American children, the needs of children with handi-
caps are those most deeply felt.

To promote an understanding of these needs and to develop strategies to
meet them, Dr. Koop convened the second Surgeon General’s Workshop at
The Children’s Hospital of Philadelphia, December 12-14, 1982. The
Workshop on Children With Handicaps and Their Families brought to-
gether health professionals, financing experts, consumer representatives,
patients and families, and local, State, and Federal Government officials
for analysis and discussion of the subject.

The major objectives were twofold: (1) to examine the problem of serv-
ices delivery to handicapped children and their families in order to develop
strategies for providing community-based services as an alternative to acute
care facilities; and (2) to examine current funding mechanisms for providing
services in order to develop new strategies of improving financing for safe,
appropriate, and cost-effective health care for these children and their fami-
lies in nonacute care facilities.

The Workshop focused on four basic goals:

* To strengthen the families’ ability to cope;

* To promote adequate support services on a community basis;

* To organize and coordinate existing community resources

on a regionalized theme; and
* To identify and remove legislative, financial, and other barriers.
Following the keynote address and the presentation of model programs
for care of the ventilator-dependent child, the participants were assigned to
small Work Groups. Their duties were to:

¢ Plan an organizational approach to health care for

ventilator-dependent children and their families;

¢ Promote family and patient autonomy for care in home

or community environments;

* Develop strategies for organizing and providing this

care in a cost-effective manner;

* Recommend monitoring processes for quality assurance

and funding dynamics;

¢ Draw implications for nationwide care for all children

with handicaps;

¢ Suggest areas for continuing study.

Because of the complexities involved in attempting to cover all handicaps,
the Work Groups concentrated on the severe, specific problems of the
ventilator-dependent child as a prototype for discussion. These findings
were extrapolated for all handicapped children.

The participants reconvened in plenary session to present their findings
and to develop a synthesis of their recommendations. Workshop Chairman
Robert G. Kettrick, M.D. conceptualized the deliberations in a summation
to the Surgeon General, who accepted and commented on them. This report
is designed to disseminate the conclusions of the Workshop to the widest
possible audience.
WELCOMING ADDRESS

Ginny Thornburgh, Advocate for the Handicapped

We are proud to welcome you from across the nation to Pennsylvania
and to Philadelphia. We are particularly proud to welcome the Surgeon
General back to Children’s Hospital. There’s no place like home.

I’m not here because I’m the wife of our governor. I’m here because I’m
a mother. I’m the mother of Peter Thornburgh, who is a superbly hand-
some, superbly fine young man who happens to be mentally retarded. Peter
would have been institutionalized had he not had superb medical care, very
fine community services, and a willing family. I think that represents the
kind of family we’re going to be talking about here. The goal of this Work-
shop is to devise public and private methods for handicapped children to
live as independently as possible.

We are very, very proud in Pennsylvania to have responded to the needs of
ventilator-dependent children. Two years ago, I visited the unit here in Chil-
dren’s Hospital where I met a number of ventilator-dependent children and
their moms and dads and brothers-in-law and uncles. All of these children
wanted to be home. Among the children I met was my friend, Jill Eshelman,
who is here today. Jill is a ninth-grader in public school in Pennsylvania and
now lives at home with her mom. That’s possible in Pennsylvania, and it’s
going to be possible in your State also, I hope. But the ventilator-dependent
children are only the tip of the iceberg. Solving that problem alone won’t
solve the problems of handicapped children.

There are going to be three things that are necessary, in my opinion, to
allow handicapped children to live as independently as possible.

First of all, we’ve got to get physicians and health planners to be willing
to respond in a creative way—not just the old tried and safe ways but in
ways that are new and exciting and right.

Number two, the advocates. That’s what I call myself. Do you remember
in reading about Socrates the word gadfly? I love that word, and I consider
myself a gadfly on the system. Advocates today have to be politically realis-
tic. Solutions to the problems of the 80s are not going to happen just be-
cause they are right or just or compassionate. They also have to be sound
fiscally. The advocates of today have to be smart politically and seek their
goals in a sound political way.

Number three, the general citizenry, the people of the nation. The people
have to be willing to become educated. There is a lot to learn about disease
and health and syndromes and medical care. The citizenry has to be willing
to learn, and you and I have to approach them on their level. If we don’t
elevate the educational level of the citizenry, the legislators are not going to
vote the funds for us to get our programs through.
The parents, too, have to be willing to take a risk. I know that. I’ve done
it with my son, time and time again. Risky decisions were made, and I was
willing to say ‘‘yes.’’? Two years ago, I was willing to say ‘‘yes’’ when he
moved out from under my wing to a group home in the community. Try
that when you’re a mom or dad and when you know what the system’s like.
It’s tough. But it’s working. Peter Thornburgh, so that you'll know how
fine he is, is a very dependable person. He now rides the public bus,
transfers, rides another bus. He now cooks scrambled eggs for himself, turn-
ing on the burner. You know, I never would have let him turn on the burner
at home. And last night, he called his best girl in Pittsburgh and asked her if
she bought a new dress for the Inaugural Ball. So thanks to good policy and
thanks to a community that was available when we needed them, Peter
Thornburgh is an independent man.

You have a task that is not pie in the sky. No more of that. We need a
blue-print for action, something Dr. Koop can present to the Nation to al-
low disabled children to become as independent as they can.
EXCERPT FROM KEYNOTE ADDRESS

C. Everett Koop, M.D.
Surgeon General and Deputy Assistant Secretary for Health

Our task at this Workshop is not an easy one. We are asking each other to
deal with very complex issues as we keep in mind the many levels of com-
plexity: the emotional and the moral, the medical and the technological, the
social, the psychological, and the financial.

Of course, we won’t be explicitly attending to each of these levels always.
But we know they are there. When we talk about “cost-effective life-support
systems,’’ we are implicitly putting some dollar value on a human life. We
may not want to admit it, but that’s certainly one outcome. So the moral
and the technological and the economic do come together, whether or not
we feel comfortable about it.

There is yet another complication. The lives we are concerned with at this
Workshop are new lives. We are able to interact with them, but there is a
clear limit to this interaction. We know, for example, that there can be no
true “informed consent’’ with a newborn. So we must turn to the parents of
those new lives and assume a joint responsibility through their understand-
ing and consent.

I think it is essential for the attending physician, in particular, to sit down
with the family and carefully go through the nature of the infant’s condi-
tion, what the medical experience with such a condition has been so far,
what kinds of options are open for immediate action, and what kinds of op-
tions may be open to the family and the physician later on.

It would be a mistake for me to dwell entirely on the potential hurdles and
barriers to the care of disabled infants and children. The overwhelming di-
rection of infant and child health in this country is toward improved care
and better outcomes.

The infant mortality rate is still declining: the provisional rate for the 12
months ending in July, the latest figure we have, stands at 11.3 infant
deaths per 1,000 live births, the lowest 12-month rate in our history. There
had been some feeling in the past year or so that we were hitting a plateau,
that the curve would begin to flatten out and we would have to begin deal-
ing with the hard-core issues affecting perinatal care in this country. But the
curve is not flattening out. It is still going down at about the same angle and
we have not yet hit any infant mortality rate that is, for our society, the irre-
ducible minimum.

Of equal significance is that most of the infant lives we are saving are
healthy lives. There is no real evidence so far that the infant morbidity rate
goes up as the infant mortality rate goes down. But, in all candor, we have
not done the kind of research that’s required in order to elevate this conclu-
sion above the level of what it really is: our best instinctive, visceral
response to the data.
Of course, we don’t need statistical curves that go sharply up or down to
understand the impact a disabled infant has upon the parents and upon the
attending medical and social services staffs. Giving birth is a highly complex
emotional, psychological, and physical event, even when a healthy baby is
delivered, How much more complex it can be when the infant is disabled.
All the persons involved—the family and the hospital staff—they all share
the feelings of guilt and inadequacy.

But medicine and social service cannot take the place of the family.
Rather, the professionals should use their talents and expertise to help the
family survive and function, to renew its strength and foster its cohesion.
For it will be the family that will provide the long-term help required by the
disabled infant. The family’s daily decisions, routines, and relationships
will translate into the support, the therapy, the special education, the recre-
ational efforts, and all the other aspects of the best possible quality of life
for the disabled child.

The overwhelming number of parents of handicapped newborns—over
95 percent—take responsibility for their children, take them home, and try
to absorb them into their family life. Our challenge is to help those parents
understand, love, and care for their child.

As I indicated earlier, even if they do get the best possible guidance, dis-
abled infants and their families may still face a future of enormous human
challenges in their communities and in their own homes. How much more
difficult their lives will be, then, if the initial help they receive from the hos-
pital staff is not the very best that’s available. Staff excellence, therefore,
must form the basis of all our procedures, routines, and work plans.

Consensus of Principles

A good staff is open to the needs of its patients and draws liberally from
the strengths of its own members. A good staff operates on a consensus of
principles that form the basis for the way we care for our disabled patients
and their families, and, I believe these few principles do have a strong
though unspoken power among us.

The first principle is to obtain open, direct, and personal communicatons
with the parents of a disabled child.

When an infant is born with Down syndrome, spina bifida, some congen-
ital defect, a damaged organ system, a missing or deformed limb, or one of
any number of disabling conditions, the physician-patient relationship is no
longer casual. It cannot be flip. And it won’t be short-term. The physician
has to translate the complicated medical terminology into words the parents
can understand—and not fear.

There are ways to train medical staff—physicians of all ages, I might
add—to settle down to a close, compassionate, highly personal, and possi-
bly prolonged relationship with parents who may be setting out on a long
and intricate journey in human growth. Young physicians especially need
this kind of training. They will have just come from an educational system
that measures success almost exclusively in terms of curing and repairing
patients and returning them to a normal state. But many disabled neonates
cannot be ‘‘cured”’ or readily “‘repaired.’’ They may never approach what
might be considered a ‘‘normal”’ state of functioning at any time in their
lives—and their lives may be very brief.
A second principle practiced by an excellent staff is this: the staff must
recognize and understand the natural responses of parents to their disabled
baby... their feelings of sadness, guilt, anger, even of shame. Parents’
questions may come in a rush, but the answers must be given only after a
great deal of careful thought. The staff now represents not only medical
care—but the outside world as well. In such intense human situations, a
staff has many assignments and few choices. No matter how serious the in-
fant’s condition, it is essential that staff members not transmit in any way a
sense of hopelessness or futility, or in effect, go into mourning for a child
who is still very much alive, however severe the physical or mental burden.

We are outraged at parents who physically abandon their children...
and I am outraged at physicians who intellectually abandon their patients.
No matter how sophisticated our diagnostic technology, it can still be
wrong. By the same token, the survival power of the human being—even in
the tiny newborn state—can be truly awesome. We need to transmit this un-
derstanding to parents, even as they verbalize their most troubling thoughts.

But I have a particular caveat to raise here. I want to emphasize that re-
straining oneself from speaking in terms of hopelessness is not the same
thing as offering false hopes to confused and frightened parents. We need
to be cautious, honest, and objective with parents. And we need to build on
their strengths.

At this time we do not have a clear idea of the number of mothers who
take home infants born with single or multiple disabilities . . . who try to ab-
sorb the information about the care they need... . or who try to cope with
all the attendant problems—but who ultimately decide to surrender their
children for adoption or institutionalization.

It has been my experience that many of these decisions to give up a child
were made by parents who would have been rewarded a hundredfold if they
had not given them up but instead had held on for just a little longer and
had been given just a little additional support. The child, in the overwhelm-
ing number of such cases, would also have had a chance at a more fulfilled
and fulfilling life.

The third principle emphasizes the full participation of the parents and
siblings in all the processes of medical care. In as many ways as possible, a
staff needs to demonstrate to the parents that they are needed as partners. It
is not artificial, not some ruse to trick them into doing something they
ought not to do. Quite the reverse. There is no substitute for loving, caring
parents.

As soon as possible, the physician and other staff members should try to
get the child literally into the hands of the family. A parent staring through
a pane of glass at a little baby in a covered isolette over in the corner is not
my idea of ‘‘family togetherness.’’ Even though the baby may be bandaged,
intubated, monitored, and fed with a hyper-alimentation line, the parents
can and should touch, and... if possible . . . hold and cuddle the child.

As a last principle I would say that the medical and social service staffs
need to play a positive, active role in linking up the child and the family with
available social and medical support groups in the community.

In other contexts and for more routine situations we all advocate continu-
ity of care and total care for our patients and clients. How much more im-
portant is this kind of approach for infants with disabilities? The medical
and social service staffs who take this principle seriously have the set of
mind and the firm professional commitment to become advocates for their
patients and the parents. In that role, they help make the vital connections
between home and community resources.

People who work in hospitals, clinics, schools, or other service institu-
tions are usually familiar with most of the community services net-
work—and very often they assume that everyone else has the same informa-
tion. But, in point of fact, most people do not.

Most people may, on occasion, have used one or another social service or
health agency or may have regularly contributed to certain voluntary organ-
izations concerned with a particular disease or disability. But when people
are faced with the immediate need to get information, apply for help, re-
quest certain resources, make connections, make decisions—much of their
past experience and knowledge becomes somehow disjunctive.

If the parents and the staff have formed a relationship based upon the
principles I’ve talked about this morning—even if they have already made a
firm commitment to give their child all the care and love needed—they may
still be totally overwhelmed by the byzantine complexity of our social service
delivery system. Society may seem to be conspiring against their humanity.

] think it’s important to remember that “‘social services’’ as such are not
exclusively the province of the ‘‘social service worker.”’ Certainly we expect
a greater professionalism from a person trained in this field, but there are
many other disciplines within the hospital community that can be helpful,
too. | am thinking in particular of that new and extraordinary breed of indi-
vidual known as the “‘neonatal intensive care nurse.’’ They bring to their
job a total commitment to child health and welfare . . . not in the abstract,
but in the real world of day-to-day care for tiny vulnerable lives.

When we introduce the patient’s family to the world of social services, we
can help make good things come to pass, but we cannot insure that good
things will come to pass. Families have rich and varied biographies. For-
tunes rise and fall. Children do or do not all get along with each other.
Mothers may or may not succeed in developing a strong bond with their dis-
abled infants. Husbands and wives may or may not cleave to each other till
death does them part. And the disabled infant . . . growing child . . . young
adult . . . and adult are part of that evolution, that miracle of human
growth. And, like all miracles, you cannot predict how this one will turn
out.

That word—‘‘miracle’’—is being worked very hard these days. It tends to
be used with every new development in medical technology, regardless of
the outcomes. Certainly there may be much that seems to be ‘‘miraculous’”’
about infant intensive care technology, but the outcomes are also mixed.

A New Category of Disability

I mentioned that the infant mortality rate is coming down and that, as
near as we could tell, most of the babies we are saving are healthy babies.
But the picture is really not that simple. A number of the infants we are sav-
ing are premature or arrive with a low birth weight or are immature in some
aspect of their development and exhibit respiratory distress. They may be
taken immediately to an infant intensive care unit, or transported to one,
and put on a respirator. These babies are usually the ones that might not
have survived their birth just a few years ago. Today they are alive. But they
represent a new category of disabled child—a category created by technol-
ogy. The alternative for such babies had once been death.

The cost is very high, not only in dollars but in family stress as well. The
child is denied the initial, vital attention of that mother. Opportunities for
early bonding are gone. The entry of that child into the family is delayed . . .
and, depending upon the circumstances, possibly delayed forever.

I know others on the program today and tomorrow are going to speak
more particularly to this example. But I want to underscore its significance:

First, the respirator-dependent child is a creature of our new tech-
nology and, in fact, needs additonal technology to relieve the state
of dependency. This is no longer a unique problem for medicine.
It is very useful, therefore, to take a close look at the problem of
the respirator-dependent child in order to search out those con-
cepts and approaches that may produce workable solutions in
other, similar situations. The way we handle this particular prob-
lem may, in fact, be a kind of model for the way we might deal
with many other disabilities that tax our human and material

resources.
Second, the problem of the respirator-dependent child concerns
technology . . . but not exclusively. Fundamental to the handling

of this problem, I believe, are the several principles promoting
staff-family interplay. This is where technology leaves off and
basic humanity takes over.

Third, it provides us with a rather clear assessment of how ade-
quate—or inadequate—our social services may be, not just for pa-
tient care but for total family care as well.

And, fourth, it is possible for us to begin some longitudinal studies
of how these patients do, both in the hospital setting and in the
home, what the costs are at each place, what the effects are of
changes in technology, what the cost/price history is, and so on.

Such an opportunity rarely appears in which all these four elements are
present. So I am delighted to see you here, looking hard at the overall prob-
lem of providing better care for disabled children and their families, and
also focusing in on the specific example—or ‘‘model’’—of the care for the
respirator-dependent child and the family.

Again, let me thank each one of you for coming today, for contributing
your time, knowledge, and experience—and your basic humanity—to this
problem. In the long run, I think that the way we deal with problems like
this reveals just what kind of a society we are.
 

 

10
PRESENTATIONS OF PROGRAMS
FOR CARE OF
VENTILATOR-DEPENDENT
CHILDREN

THE PENNSYLVANIA PROGRAM

Robert G. Kettrick, M.D.

Over the past decade we in the medical community have made tremen-
dous technological progress in preserving the lives of the newborn. This au-
dience, representing the health care industry, is largely responsible for pro-
viding the medical environment that enables these children to live, although
sometimes with disabilities and possible handicaps. This imperfect solution
is of no less importance for the legislators, administrators, and executives
present than for the doctors and nurses. You also represent our society and
our system of values. These disabled children are the children of our society
and in that sense they are your children.

Today, in the United States, there are legitimate health care alternatives
that are not available to these children and their families. You, as members
of society and as contributors to the health care effort, need to insure that
all reasonable alternatives of care are available.

With respect to the case model of the ventilator-dependent child, my mes-
sage to you is simply this:

1. In many instances we can take better care of children and adults
outside of an acute-care facility. This better care can be provided in
the home at less cost than that which institutional care seems to
mandate.

2. In order to provide this other legitimate alternative—home
care—we need to identify and correct those circumstances which
prevent its implementation.

Let me start to develop these points by sharing some of our experiences.
Consider the child who has a total thoracic ectopia cordis. From a clinical
standpoint, these children would not have survived. At least they never did
before, but now three of these children are alive. Two are still dependent on
mechanical ventilation. The first of these children remained in our hospital
for just over three years with hospital charges exceeding $750,000. He then
went home on mechanical ventilation, supplemental oxygen, and with a
tracheostomy. During the succeeding two years at home he was eventually
decannulated. During that time he commuted to a community special edu-
cation program, and part-time nursing service was supplied through New
Jersey’s Supplemental Social Security Income/Disabled Children’s Pro-
gram. These were devastating times for this family, who had to struggle to
provide care, work, and pursue further education.

11
12

Consider another type of patient—the premature infant. Ten years ago
the infant of less than 1500 grams was likely to die. Six years ago my daugh-
ter, a 1300 gram preemie, spent one month in a neonatal intensive care unit,
one week ina transitional unit, and was sent home at 1900 grams. The times
have changed; more and more premature infants weighing less than a thou-
sand grams at birth are living. Some, however, live to develop bronchopul-
monary dysplasia and in many cases chronic respiratory failure secondary
to that bronchopulmonary dysplasia.

Still another category of patient is represented by Chris, a child with a
post-infectious demyelinating syndrome which left him  ventilator-
dependent. The family was educated in the techniques necessary to provide
care at home and the child was discharged. Part-time nursing was provided
through union insurance. At that time he had a portable, battery-operated
ventilator, battery-operated suction, and a portable liquid oxygen unit. The
community made resources available to take him to school and to provide
for his education.

When I talk about care at home as an alternative, I am talking about the
routine use of advanced life support technology in the home, in a very real
sense transplanting elements of the expensive intensive care environment to
the home. Can it be done? Absolutely! Can it provide better health care for
the child? Absolutely! As long as you select your patients and family prop-
erly, and as long as you can find a way to pay for it.

Etiology of Ventilator-Dependency

Ventilator-dependent children fall into three categories. First, there are
those with severe bronchopulmonary dysplasia, often with right ventricular
hypertrophy. Originally, we accepted these patients from infant intensive
care units all over the Delaware Valley. More recently, we have had to
restrict our transfers to those from our owninfant intensive care unit. Their
mean duration of hospitalization is 499 days, and the range is between 285
and 1,250 days.

The second group are those children with neuromuscular disease. The
children with severe infant botulism are particularly satisfying to work with.
They all get better, but it may take 3 to 6 months to wean them from mech-
anical ventilatory support. These are children with severe motor impairment
whose cognitive potential generally is not affected. Eventually, all of these
children have their care transferred to a home environment. However, ef-
fecting that transfer is time-consuming as evidenced by their own mean
duration of hospitalization—214 days.

The third group of children consists of those with congenital anomalies
directly associated with chronic respiratory failure and those anomalies
whose management was associated with complications producing chronic
respiratory failure; e.g. esophogeal stenosis, tricuspid atresia, and pulmo-
nary atresia. For this group, corrective surgical procedures, growth, and
development usually allow eventual independence from mechanical ventila-
tory support. The mean duration of hospitalization for this group is 198
days.

Because of limitations of skill and knowledge inherent to our ““state-of-
the-art’? medical and surgical expertise, results are often supportive rather
than curative. We have achieved a patient population which would not have
survived before the regionalization of medical services; part of the achieve-
ment comes from efforts at the local care facility to stabilize and to trans-
port the infant to tertiary care facilities. The intensive care environment,
with its technological sophistication, its surveillance by nurses and physi-
cians, and its rapid responsiveness to patients’ needscontributes to chroni-
city. Both public and private financial support have underwritten this
medical effort and therefore have contributed to the survival of patients
with chronic respiratory failure.

Disposition

There are a number of possible disposition alternatives for the child re-
quiring long-term ventilatory support. First, the intensive care unit, It is ex-
pensive—approximately $250,000 per year. It forces separation from the
family. It exposes the child repeatedly to stressed personnel, stressed fami-
lies, and gallows humor along with catastrophic deaths, bloody interven-
tion, and group assault. It is a terrible place to grow up, but grow up these
children do. Currently 9 of the 28 beds in our acute care facility are oc-
cupied by children with chronic respiratory failure. There have been times
when 16 of our 28 intensive care beds were occupied by such children.

Yet, the chronic care facility or extended care facility for ventilator-
dependent children doesn’t exist. Why? Ventilator-dependent children are a
relatively new problem, and many people don’t want to believe the problem
exists. Many see death as a more cost-effective alternative; many see death
as a more humane alternative. Many are scared by the economics and the
experience with dialysis. However, the reality is that this patient population
does exist and will continue to exist. Extended care facilities may have to be
developed.

The acute care hospital intermediate unit is an essential step towards suc-
cessful implementation of home care. The pediatric intensive care interme-
diate unit of The Children’s Hospital of Philadelphia has evolved into a
community where ventilator-dependent children come to live while we begin
to sort out their medical and social needs. The unit has adapted a plan for
the support and protection of the ventilator-dependent infant. It recognizes
that:

1. The responsibility of the medical community is to provide an envi-
ronment that will support and protect the child from those phenom-
ena that will adversely affect organ, system, child, and family
growth and development.

2. The natural history of each of the diseases which produce chronic
respiratory failure largely dictates the rapidity and/or possibility of
wean.

3. The child belongs to the family. Medical paternalism is actively dis-
couraged. We have a goal of an integrated family with a strong par-
ental sense of responsibility for the care of their child.

The environment for these children is very important. Efforts are directed

towards providing a warm, humane, and stimulating environment. Non-
invasive technology and treatment are stressed. For example, respiratory

13
14

status is assessed using impedence pneumograph, capnograph, trans-
cutaneous oxygen analysis, and clinical presentation. Blood studies are
drawn primarily to provide support for presumptive diagnoses, not for rou-
tine screening. Drugs are administered enterally. Intramuscular injections
are avoided since they are painful, and their cumulative effects have been
associated with muscle fibrosis and limitation of motion.

We try to provide a normal rhythm to the day. After the lights are turned
on in the morning, there is a pattern of bathing, tracheostomy care, dress-
ing, feeding, and so forth. Lights are dimmed for naps and consultants are
encouraged not to disturb these naps. Parents can be with the child at any
time, and other family members are encouraged to visit and interact with
the child. The hospital is home for these children, and the environment
should reflect such an atmosphere as much as possible.

The transfer of an infant to a unit for chronic ventilatory support can pro-
duce significant stress for the family. The caregivers whom the family have
grown to know and trust are left behind. An uncomfortable realization that
there is to be no cure is reinforced emphatically by the other children and their
technologic chains. There are concerns about finances. Helping the parents
through this period and eventually developing a strong alliance with them is
part of our goal. Our efforts are directed towards: 1) a mutual trust established
through clear communication, consistency, honesty, and provision of a non-
threatening environment; 2) incorporation of the family into the care plan.
Short-and long-term goals are reviewed, explained, discussed, and adjusted to
meet the needs of the parents; 3) establishing the parents as effective, confident
caregivers and advocates of their child; 4) when appropriate, transfer of the
child’s care to a home environment.

Parent-infant bonding is essential. What we often see are parents who are
afraid to touch or hold their child. We intervene and set the example by
touching the child, stroking the child, and encouraging them to do so. We
appreciate that the parents have gone through the first stage of bonding
when they feel comfortable enough to go to the crib, drop the side, and
independently gain access to the child. Then we move on to encouraging
those aspects of care which represent caretaking: providing clothes, activity
of daily living, caretaking tasks, comforting, and meeting special health
needs.

We then encourage and reinforce the parents’ identifying the child as
their own and as their responsibility. This process might be called desen-
sitization, or bonding, or behavior modification. It might also be looked at
simply as education with interim goals and the need to meet certain criteria
before moving from one level of education to another. Indeed, these fami-
lies do move through basic child care, sensory motor stimulation, nutri-
tional care, daily respiratory care, and equipment management.

Invariably, the parents reach a point where they feel that they are just as
capable of taking care of their child as the doctors and nurses. While they
were evolving to that point, they saw other children go home with supple-
mental oxygen or tracheostomy, or mechanical ventilation. They see chil-
dren and families coming and going for out-patient visits and sometimes
just for socializing. Eventually their sense of self-confidence and peer pres-
sure brings them to ask the question, “‘Can we take our child home?’’ The
answer is, ‘‘That’s a substantial commitment—let’s sit down together and
review it and see if it’s the best thing to do.’’ We do that, and invariably for
the parent who asked this question, it is the best thing to do.

We examine various aspects to determine whether it’s appropriate for the
child to go home. Inability to wean is considered. This might just as well be
inability to be independent, or hyperalimentation, or inability to be inde-
pendent of intravenous antibiotics, or inability to be independent of di-
alysis. We look for patient stability. We look for an involved family unit.
We look for an appropriate home environment. In our experience, this envi-
ronment might be on the main line, a trailer park, a farm, or an apartment.
Generally, the physical plant that is appropriate for the family is acceptable
for the ventilator-dependent child. An important consideration relates to
the electric capacity which must be adequate so that the ventilator and suc-
tion will work if someone decides to use the toaster. We look for two skilled
caregivers. For this we use a checklist with some 30 differents points of skill
and knowledge that the family needs. We look to see if service and supplies
are readily available in their community. These needs have not been prob-
lem areas in Pennsylvania or New Jersey. Finally we look for money.

Financing Home Care

Consider the family who has a major medical coverage with INA, Aetna,
or Prudential. The policy rarely pays for extended nursing care in the home.
However, we can call them and explain that the child has respiratory failure
which requires hospitalization. In addition, we point out that the child’s
family has major medical coverage so that the annual cash flow is sub-
stantial. We then outline to the company how they can reduce their annual
cash flow by about 75 percent. Happily, we have not been disappointed. In
all cases they have elected to capitalize the equipment needs for home care
and to underwrite nursing for these children.

We had another child who was insured with the Carpenter’s Union. His
benefits did not extend to home care. We explained this to the regional rep-
resentatives who referred us to the board of directors. We sat before the
board of directors and explained the child’s needs and the cash flow prob-
lems. The board of directors felt that they could not make an exception for
any one child, so they voted to change the policy and make it retroactive so
that this particular child and all others could be covered.

Contrast that with this response that I received from a Health Mainte-
nance Organization when I asked for financial help to undewrite home care.
“The child is already through our $100,000 corridor and now she is covered
by our re-insurance carrier. We wouldn’t dare send her home and risk hav-
ing her re-admitted. If we did that, we would have to pick up the corridor
again. Keep her in the hospital. It’s paid for.’’ The question of what was
best for the child wasn’t to be discussed, but we did discuss it further with
the involved parties and were eventually able to effect a solution which al-
lowed for underwriting of home care.

The response from Blue Cross is variable. In Pennsylvania, the important
precedents have been set and currently they will pay for the equipment and
partial nursing support.

CHAMPUS has evolved, and an important precedent has been set. Recall
the child with the total thoracic ectopic cordis. More recently, an Air Force
dependent was discharged home with mechanical ventilation. All equip-

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ment, including backup equipment, was funded through CHAMPUS, as
was sufficient nursing to allow parents respite and the opportunity to keep
their jobs. It wasn’t easy for the parents—they worked alternating shifts—
but they did have their son home with them after 3 years of hospitalization.
Within 4 months the child was weaned, and 3 months thereafter he was de-
cannulated.

Until recently we couldn’t budge the medical assistance system. They
would pay hospital costs, often up to $210,000-220,000 a year per patient,
but they would not provide nursing support for care at home. However, im-
portant precedents are now being set. Secretary of Health and Human Serv-
ices Richard Schweiker has set up a Federal review board so that these cases
can receive individual review and he recently allowed for waiver of rules so
that Medicaid money can be used for at-home care. Just four weeks ago,
Governor Kean of New Jersey came to The Children’s Hospital of Philadel-
phia to send off the first such patient to New Jersey.

Several years ago, the Commonwealth of Pennsylvania, through the leader-
ship of Representative Mary Ann Arty, and Governor and Mrs. Thornburgh,
made monies available for a pilot program for home care of ventilator-
dependent children. The program provides for disbursement of Common-
wealth of Pennsylvania Department of Health and Welfare funds to meet the
legislative intent of Appropriation Act 17A of 1980. Through the terms of this
Act the Commonwealth contracted with a private corporation to develop a
program to allocate State funds for services, equipment, and supplies for care
at home of ventilator-dependent children. This public-private experiment has
been cost-effective, has facilitated hospital discharge for ventilator-dependent
children, and has increased the availability of community support services.

The program now supports 25 children and their families in their homes.
However, there are over 200 more patients in acute care environments in
Pennsylvania who might benefit from this kind of program—with enor-
mous savings to the third-party payment system.

Providing home care for ventilator-dependent children does not necessar-
ily require more dollars. Indeed, we can extend our resources by defining
less expensive and equally effective alternatives to hospital care and by rede-
signing the reimbursement process to meet patient needs to allow for pay-
ment of the less expensive alternatives. In the model problem of the ventil-
ator-dependent child, care can be better at home. There are clearly fewer
infections, development progresses more rapidly, and where weaning is pos-
sible, it occurs more rapidly. In addition, care is less costly for this group at
home.

Our system of health care delivery has effected a growth in the numbers
of disabled infants, children, and adults. Among these disabled, ventilator-
dependent children have been denied access to reasonable alternatives of
care because of misperceptions about the complexities of their needs and be-
cause the system has not adjusted to meet the needs of that which it has
produced.

Our experience in Pennsylvania indicates that care at home in particular
is a reasonable alternative for ventilator-dependent children. This alterna-
tive has not been available to all families who might benefit from it. We
need to learn how to make it uniformly available and of high quality.
THE NEW YORK EXPERIENCE

Mathew H. M. Lee, M.D.

Goldwater Memorial Hospital is a 912-bed facility specializing in long-
term rehabilitation and treatment of chronic illness. As part of the Health
and Hospitals Corporation of the City of New York, the hospital maintains
a longstanding affiliation with New York University Medical Center. The
long-term rehabilitation effort focuses on the team approach to patient care
along with the individual’s discharge potential; that is, discharge of each pa-
tient as a viable, productive, and self-supporting member of society, living
outside of the institution in the general community.

We have recently conducted a study to explore the independent living
problems of the severely handicapped respiratory patient as related to his
personal adjustment, health care, and economic survival.* The objectives
of the study were as follows:

1. To assess medical and social resources available to the severely
disabled respiratory patient living independently in the com-
munity.

. To evaluate the cost effectiveness of these resources.

. To develop a comprehensive rehabilitation service plan which
includes medical treatment, public health nursing, pulmonary
testing on a routine basis, and maintenance of life-support
equipment and motorized wheelchairs.

4. To assess the need for other types of clinical care including oc-
cupational therapy, physical therapy, speech and audiology,
psychological therapy, and vocational counseling.

5. To assess vocational potentials and training of these patients as
a function of their medical condition and functional mobility.

The following table demonstrates that home care of the ventilator-
dependent child should be thought of as a continuing process which can
proceed into adulthood. One-third of the patients studied have lived at
home for more than 10 years.

YEARS LIVING IN COMMUNITY AFTER

WwW NO

ONSET/DIAGNOSIS

N %
Less than 2 years 7 8.1
2- 5 years 30 34.9
§ - 10 years 19 22.1
10 - 15 years 10 11.6
Greater than 15 years 18 20.9
N/A 2 2.4
86 100.0

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The next table shows distribution of the vital capacities of the patients in
our survey.

PERCENT VITAL CAPACITY

N %
0 - 10% 12 14.0
10 - 20% 18 20.9
20 - 30% 14 16.3
30 - 40% 10 11.6
40 - 50% 9 10.5
Over 50% 22 26.7
85 100.0

You will note that some people in the study (34.9%) have vital capacities
reduced below 20% of their normal predicted volumes, and that a total of
63 people (73.2%) were below 50% of their predicted vital capacity. In past
years, people with this degree of pulmonary compromise died from carbon
dioxide retention and subsequent cardiopulmonary arrest, usually precipi-
tated by pneumonia or other respiratory infections.

The twenty-two (26.7 %) patients falling into the over 50% vital capacity
category may not experience respiratory distress under usual circumstances.
However, during a cold or intercurrent infection, they require ventilatory
support to exercise their lungs and help mobilize secretions. Often they can-
not expel thick secretions and require medical treatment with antibiotics and
expectorants, along with judicious physical therapy of the chest (pulmonary
toilet) during an illness. All of these clients are at risk when faced with a res-
piratory infection and require prompt and experienced medical intervention.

Ideally, professional rehabilitation services allow the patient to move
toward independence at his own rate. In this ideal, support and guidance
are fostered, while the individual encounters and overcomes the problems
of a new lifestyle. This support can be diminished progressively as the indi-
vidual reassumes the ability to make a choice and carry out his needs. How-
ever, there is a definite existential difference between these elements of human
potential and actual access to knowledgeable medical care and supportive
services. These services are the sine qua non for conditions favorable to
community life and subsequent employment.

During the course of this study, lengthy discussions with patients strongly
suggested that they do not want to exhaust the financial supports offered by
society. These individuals do not consciously choose physical immobility
and dependency. They desire to regain control of their own lives. Urban
planners and health planners alike are aware of the existence of disabled
people, and gains have been made in many areas. Patients acknowledge re-
forms, yet the fact remains that the day-to-day experiences of living in a
wheelchair are still frustrating. Simple survival in a world not ready to re-
ceive quadriplegics is a continuing struggle.
In this regard, we at Goldwater Memorial Hospital are planning to meet
the medical health maintenance needs of patients by establishing an Inde-
pendent Living Center. Goldwater Memorial Hospital’s specialized and
unique respiratory care services are available currently to hospital inpatients
and a large number of community-based residents. The Center will assist the
patient in maintaining his community residence by the provision of individ-
ually selected service support.

Observation of the lifestyles of members of the severely handicapped com-
munity serve to expand our conception of human potential. Comprehensive
rehabilitation efforts, along with re-education, allow us to recast an image
of an immobile, dependent human being, to that of an active, autonomous,
reflective being, despite severe physical and functional limitations. Medical
and health practitioners must give increased attention to implementing the
consistent support needed to help the patient achieve this goal. When ap-
propriate support is available, the patient has the capacity and the need to
assume responsibility for his own existence. In many cases medical and in-
stitutional expenses have been reduced following the comprehensive reha-
bilitation and educational training of motivated patients. The cost effective
nature of rehabilitation is not to be underestimated.

*This study was supported by a grant from the New York State Office of Vocational Reha-
bilitation. Copies of the report of this study can be obtained by contacting our hospital.

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THE ILLINOIS PLAN

I. Program Perspective
Allen I]. Goldberg, M.D.

The Illinois program for the home and community care of ventilator-
dependent children will be presented from three perspectives. I will first
describe the advantages which we have found in moving the children from
acute bed treatment at Children’s Memorial Hospital to the far less expen-
sive and more satisfying care at home. I will also define some of the prob-
lems the program has encountered and ways in which we have attempted to
cope. Then Mr. Eugene Bilotti, Administrator of the Programs, will describe
how services are delivered and reimbursed. Finally, Dr. Arthur Kohrman
will discuss our efforts at regionalization.

Our experience at Children’s Memorial has had and continues to have its
difficult periods. Perseverance by our staff and by the families of the
children in the demonstration project has resulted in satisfaction in many
ways for those who have been transferred successfully to home care.

First, the program saves money. The cost of hospital acute or inter-
mediate care has risen by 84 percent in the past five years, from about $400
per day to about $1000 per day for acute care and to about $750 per day for
intermediate care. The cost for care at home has remained at about $250 per
day initially after transfer and in time drops to under $200 per day.

Examples of the above follow:

I

Patient D. W.—Age at discharge—3 years 4 months Discharge Date: 9/10/79
Condition: Partially ventilator-dependent

@ | hour ‘‘free time’’

@ 35% 0; support

Hospital Care Costs Home Care Costs
March 1, 1979 - August 31, 1979 January 1, 1981 - June 30, 1981
184 days (6 months) 181 days (6 months)
Intensive Care $ 67,550 Nursing $ 31,680
Pharmacy 990 Central Medical Supply 460
Radiology 260 Life Care 1,560
Laboratory 1,760 CMH 2,930
Central Supply 1,490 AAMED 4,390
Respiratory Therapy 65,190 Barton Research 870
Physical Therapy 2,450 Marie Lynch 180
Cardiology 30 Total $ 42,070
Take home drugs 20
Non-covered charges 260 $ 42,070 = $7,010/month
Total $140,000 6 months
$140,000 = $23,330/month
6 months $42,070 = $230/day
184 days
$140,000 = $760/day
184 days
II

Patient H. S.—Age at discharge—1 year Discharge Date: 6/1/81
Condition: Totally ventilator-dependent

@ ventilator at night

@ diaphragmatic pacers during day

@ no oxygen required

Hospital vs, Home Care Costs
6 Month Cost Comparison
Private Insurance—Midwest

Hospital Costs Home Care Costs
1981 1981
$189,250/182 days  $45,630/184 days Total
$ 1,040 $ 250 per day
$ 31,540 $ 7,610 per month

76% Decrease

Secondly, our program has demonstrated recognizable values in having
these children grow up in a more normal and human environment. Their
personalities broaden; they interact with their parents and siblings; they at-
tend school; and they can participate in their religion. Some improve to the
point of no longer requiring support.

By 1980, it had become apparent that the application of advanced medical
knowledge and sophisticated technology by organized teams of health care
professionals was saving an ever-enlarging number of disable children need-
ing a variety of solutions and services not readily available. Demonstration
projects of home care were not enough. Some children needed other options
for social, educational, and future vocational reasons. Study led to the calling
of a Conference on the Chicago Program, in October, 1981, to understand
better and to define the present situation and to plan for the future. At the
Conference, we asked, ‘‘Whatever Happened to the Polio Patients?’

Why polio? There are three reasons:

@ First, the modern medical disciplines of critical care and rehabilitation
medicine have evolved from the organizational and technological
advances made in response to the worldwide crisis created by polio.

e Second, the resulting excellent health care has created a new and en-
larging population of survivors of many diseases and conditions
who depend upon life-supportive technology.

e Finally, these new survivors face many problems and have a diversity
of unmet needs similar to those of the polio patient of the 1950s.

What is the situation now regarding the ventilator-dependent child?

‘The proceedings of the Conference are available from the Rehabilitation Institute of
Chicago, Dr. Don Olson, Director, Education and Training, Northwestern University Medical
School, Rehabilitation Institute of Chicago, 345 E. Superior St., Chicago, IL 60611. Tel: (312)
649-6179 or Eli Henig, Rehabilitation Institute of Chicago. Tel: (312) 649-6190.

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The Health-Care Perspective

Regional acute care centers utilize valuable technological and professional
resources for months and even years at an enormous cost. Facing decreased
Federal, State, and insurance cost-reimbursement, they must limit their fa-
cilities’ capacity to serve acute care patients.

Regional rehabilitation and long-term care institutions have available or
adaptable resources to meet many of the needs of these children on ventilators.
They could provide cost-effective, appropriate care if they had adequate pre-
paration to do so. At present, these institutions do not accept these children.

Such institutions also face economic constraints and need new directions for
their missions.

The Consumer Perspective

The needs of a ventilator-dependent child disrupt family unity and tax all
the strengths of a marriage. Both health care consumer (patient and family)
and the physician in the community face inappropriate utilization of institu-
tional resources because of a lack of information, education, and/or an or-
ganizational approach. Consumers have the potential to help find the solu-
tions to these problems if given the opportunity. Instead, the excessive costs
of acute-care domiciling are indirectly added to everyone’s burden as taxes
and insurance premium costs.

The Organizational Perspective

Health Care Service Providers are finding an increased demand for their
services and products, but mechanisms for reimbursement do not meet the
diversity of services they can provide and the cash-flow they require for oper-
ation. They seek guidelines for meeting a standard of care and mechanisms
of coordination and communication with health care facilities, third-party
payment agencies, and insurance companies.

Public and Private Funding Sources recognize that alternatives to institu-
tionalization can save money on a case-by-case basis. There is some uncer-
tainty about the fotal cost-savings once a more workable and universal sys-
tem of reimbursement is in place. In some cases, fragmented funding for
human services can be combined for a total cost-savings. Funding sources
recognize that there presently exists no standard of home care, no operating
procedure, and no established case management/case monitoring system.
Furthermore, there is concern about the appropriateness of treatment by
medical providers. For example, the Blue Cross Association has recently en-
acted ‘“‘Medical Necessity Programs,”’ such as one for Respiratory Care,
which is a responsible, well-planned approach to reduce unnecessary costs
for non-essential services.

Voluntary Service Organization and Non-Profit Health Care Agencies
have excessive demands upon limited resources. They need education and
information to adapt to meeting new needs and guidelines to determine

services.
Other Organizational Possiblilities: Many organizations that care about
people (religious service organizations, and community-based voluntary groups
such as Rotary, Lions, Kiwanis, Elks, and Shriners) have ‘‘grass-root’’
resources. Many search for new directions. They can help provide local sup-
port for intact families or alternatives to the family. Today excessive health
care costs have nearly exceeded our ability to pay. Unless we design opera-
tional systems and reimbursement mechanisms, we face the danger of curtail-
ment of services and a resultant decline in the quality of life, or even survival,
for some disabled people. Our past demonstrations and those of others
abroad have proven that a higher quality of care can be more appropriately
given with the family or in the community at enormous cost-saving. We can
provide better care for less money. The solution of the problems of the ven-
tilator-dependent child will have far reaching and universal benefits because
of appropriate application to the many other complex health care and
societal problems we face today.

Il. Home Health Care—Case Management Approach
Eugene E. Bilotti, Administrator/SSI-Disabled Children’s Program

Years of singular growth and development had left health programming
and social service agencies where it was hard to conceive of a plan that
would place a severely medically involved youngster in his or her own home
with $16,000 worth of sophisticated medical equipment and around-the-
clock nursing services. Nevertheless, this is what the ventilator-dependent
children brought to the scene. The Illinois Department of Public Aid had no
official policy concerning such children. With each involvement, it had to
establish an exceptional policy waiver. The Federal government was begin-
ning to address the issue by a task force established to study and subsequently
to make recommendations for the care of these children. Exceptions were
also required by Crippled Children’s programs as well as insurance carriers.

The need for such a plan was obvious to all concerned parties. The most
notable was that the child would be placed in the loving environment of his
or her own home. A second was that there would be an immediate cost re-
duction of approximately two-thirds of the cost for institutional care. The
limitations of such programs were also obvious in the medical/safety and
social areas. When planning for these children to go into their own homes,
we needed to be aware that emergency medical support would be absent.
Obviously, careful detailed planning was necessary in order to not threaten
the child’s life and/or safety. All the assets and liabilities being weighed, it
was decided that we would attempt to place a child in his own home. We de-
veloped a case management approach. It should also be noted that other
children with similar needs, although perhaps not ventilator-dependent,

would need to follow the same type of case mangement approach,

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The following is the Illinois approach to home placement:

1. Medical Plan

Our Illinois approach begins with a very thorough medical protocol.
This plan is detailed to the point of specifying every piece of equip-
ment and a careful list of supplies. It also indicates who is to order
the equipment, the designation of the primary physician, provisions
for backup emergency care, a designated hospital to assume emer-
gency responsibilities within the geographic area, an available res-
piratory therapist to monitor the program, and a careful description
of other professionals needed.

2. Case Management Plan
A home case management plan is developed that clearly details and
limits the persons and agencies involved.

3. Nursing Services Plan
This plan includes a program for procuring the nurses, a plan for
training and for determining an hourly rate of reimbursement. The
nursing plan also details a projection aimed at reducing the number
of nursing service hours from 24 to 16 hours a day and then to 8
hours a day, with the hope that the family will eventually be able to
function without regular nursing service.

4. Financial Planning

An exact financial plan is essential. Without a means of paying for
the total program, all programming would abruptly end. The role of
involved and legally responsible insurance carriers is determined. A
plan is developed with the medical assistance unit of the Department
of Public Aid defining their role and the amount of responsibility
they will assume. The plan also includes a projection to reduce costs
within six months to a year.

5. Family/Home Care Plan
The suitability of the family situation needs exploration. It is gener-
ally anticipated that a professional social worker will be needed at
this point, for the family needs to understand the likely impact of
this placement. The physical arrangements of the home need evalua-
tion. There should be a suitable room for the child with proper heat,
light, space, and an alternate power source.

6. Community Involvement Plan
The overall plan details the involvement of the community. The
local fire department, police department, and highway department
need to be aware of the presence of a ventilator-dependent child. Ar-
rangements also are made for local emergency medical services such
as a local doctor, preferably a pediatrician, to tend to this child in
emergency situations.
7. Equipment Plan
An equipment list includes such items as backup suppliers, local
pharmacy suppliers or providers, and ready information dealing
with service or repair of the equipment. It is anticipated that backup
equipment will be on hand.

8. Discharge Plan
There is a detailed discharge plan that includes emergency alterna-
tive plans, such as the local hospital that would tend to the child in
an emergency and a contingency plan for return to the hospital from
which the child was discharged.

Although we feel that overall case management system in Illinois is not in
its final form, we do feel that we have made strides in systematizing our ap-
proach and in getting these children safely and successfully into their own
homes.

Ill. The Consortium
Arthur Kohrman, M.D.

The needs of the child with long-term dependence on high technology for
continuing care must be met at several levels. The most effective means of
providing services will be the bringing together of the various institutions
and services within a given region. We are forming such a consortium in the
Greater Chicago area with the support of the funding agencies of the State
of Illinois, particularly the Division of Services for Crippled Children and
the Department of Public Aid.

Our initial efforts are focused on children with long-term or permanent
needs for mechanical ventilation. We have begun a network of services and
care which will ensure continuity, quality, and the greatest hope of the ap-
propriate placement. It is anticipated that regional tertiary acute-care hospi-
tals will continue to receive patients needing meticulous attention to airway,
pulmonary, and cardiovascular care. It is hoped that a large percentage of
children with long-term or permanent ventilatory care needs will ultimately
be placed in home settings. Some can be discharged directly home from
acute care units, but most will require intermediate-level facilities while
caretakers in the alternative setting can be trained. For many, poverty and
unstable homes make it impossible to construct adequate settings at home.
We hope to train foster parents and set up new ‘‘families’’ for these
children.

An institutional consortium approach is now being organized consisting
of Children’s Memorial Hospital (the largest children’s hospital in the re-
gion), Wyler Children’s Hospital (the acute care hospital of the University
of Chicago, Department of Pediatrics), Michael Reese Hospital (also Uni-
versity of Chicago, Department of Pediatrics) and LaRabida Children’s

25