VOLUME 8, ISSUE 4

 

The Magazine for the Respiratory Care Professional eae Om as lces

AARTimes presents the proceedings of the
Surgeon General’s Regional Workshop on Home Care

 
Home Care Savings Potential
Draws National Attention

Al Kemp Addresses Community-Oriented Home Care

The disabled comprise the fastest growing segment of our population, and the
most vulnerable within these groupings are the children and the elderly. Here inthe St. Louis area, asis
the case in the rest of the country, we find probably the fastest growing segmentof our population by age
category — those over 65. This is the top region of the country as far as the proportion of
percentage of elderly over 65.

Medical, surgical and technical advances have saved the lives of children andadults who would have
died in past years. Children and adults with multiple disabilities now live longer and have more
productive lives. The ramifications for health care needs of these disabled children and adults depen-
dent upon technology for daily living are far reaching and complex. Pioneering efforts of
doctors and nurses, allied health professionals, state agency officials, insurance, hospital adminis-
trators, social workers and parents’ advocacy groups have made it possible for ventilator-dependent
children to live in the community with significant savings. Yet now, this growing population needs
regional coordinating organizations to maintain and refine current Strategies providing
community-based health care to guide and support parent groups and to educate the professional and

private sector about the dynamics of community-oriented home care. For these reasons, we are
gathered here today.®

Sam Giordano Says Communication Vital To Home Care Success

This country’s method of providing health care is undergoing a great deal of
scrutiny and revision. The problem is in achieving a balance between cost efficient medica! care and
quality care. One possible and popular solution to the problem is the “unbundling” of medical
services. Simply stated, this means that efforts should be made to effect an appropriate match of
health care resources to patient needs. This results in a more cost effective way of rendering care
with assurances that the patient will receive necessary medical care.

A key element in the unbundling process is home care. The Surgeon General,
C. Everett Koop, MD, recognized that a significant benefit could be derived if certain patients not re-
quiring hospitalization could be supported in their home environments. Pursuant to that goal, Dr. Koop
convened a workshop on the plight of the ventilator-dependent child in late 1982. Several important
recommendations were generated at the workshop. Not the least of those was to hold future
workshops to identify problems and barriers confronting the home care patient, and to establish a
network of that first follow-up workshop. Held Dec. 13, 1983, in St. Louis, MO, health care providers
and ventilator-dependent patients from across the country convened to share their stories and to
develop an understanding of the problems with home care under our present health system. lam sure
that after reviewing this issue, you will find that there is a great deal of support for the home care
patient, however, that aid is lacking central coordination and consistency.

It is our hope to continue to present the latest information on ideas, problems and methods,
for indeed the first step in establishing an adequate structure to support home care must be
communication — two-way communication. This issue satisfies only a part of that request. | invite you
to satisfy the second part: please give us the benefit of your thinking. Please share with us ideas that
may not be presented in this issue, and certainly send us comments on the subjects as they are

presented here. This exchange will eventually result in an efficient and effective home care support
network throughout this country. @

PaGaL PREM OLA TN Ce mel ast YET Tela mVA I] Department of Health and Human Services
AS

am Giordana, RRT, is executive director of the American Association for Respiratory Therapy.

 
 

 

WhatlIsA Waiver?

Many of the articles in this special report on the Surgec>
General's Workshop refer to the waivers available to ven=:.2:c"-
dependent patients. if you are unfamiliar with the waiver o7ccess.
it is important to note that there are different kinds of wa... 275

In 1981, as part of the Budget Reconciliation Act, Congress gave
the states greater flexibility to establish home and communtv-
based long term delivery systems for Medicaid individuais 4 risk
of institutionalization. These waivers, known as Section 2176
waivers are quite different intheir scopes, with some states targeting
solely on the aged and physically disabled population, while oiners
focus on the developmentally disabled. Each state requests its
own range of services, and some do include respiratory therapy
home care.

There is a second kind of waiver permitted under the 2176
program. The “model waivers” permit a state to target a specific
group of no more than 50 blind or disabled individuals for Medicaid
eligibility and community-based long term care services who, jf
without the waiver, would be eligible for Medicaid benefits only
if institutionalized.

Further, there are the Katie Beckett waivers, established
by Section 134 of PL 97-248. These waivers give the states
the option of extending coverage to disabled children living
at home or in the community provided that the cost of the
care does not exceed the cost of institutional care.
Interestingly, and this is the basis of part of the AART'S

 

 

 

arguments, only one state, Idaho, has chosen the ob Qn

Section 134 Katie Beckett waiver option. Ge Sen, Very, e

Avery important fact to note about the waiver Pap teray, Ce C25 Cen,

system is that it is exactly that — 2 system which ie, § Cooé th? t &P 1p

waives existing rules. It becomes the exception IPecay , Nora. Pn Xen ; 1995
rather than the rule. The AART firmly believes that te ve ne 2o, 6° e An, %

respiratory care for ventilator dependent Wig Cw 4 vo 2 Chy, ery VAL,

individuals ought to be the rule rather than nonin th diggPe an Mon ea or a

the exception. Scio} lits wy “F Witp, aie etuy

 

 
This meeting is a natural follow-
up tothe Surgeon General's Work-
shop on Children with Handicaps
and Their Families, which we held
a year ago in Philadelphia. At that
time, in my charge to the workshop
participants | said, “The way we
deal with problems like these re-
veals just what kind of society we
are.”

| think the record of the past 12
months is clear enough. It shows
that we are still a caring and com-
passionate society — concerned
about the health of children, sym-
pathetic to the families who face
enormouschallenges inthecourse
of accepting and raising a handi-
capped child, and innovative in the
way we bend the political and eco-
nomic environment to make it
serve the human needs of our
families, rather than the reverse.

But those are generalities. Ac-
tually, | have two specific reasons
for being especially pleased to

ON 72 e tae eleeM LEN TEENA TERE TER AAR

 

The Surgeon General's seminar on ventilator-dependent
children and adults captures the attention of the news media.

urseon General Ap
Society To Share Problems Of
The Handicapped

by C. Everett Koop, MD

open this conference this morning.
First, | can’t tell you how proudlam
to be in the government, to have
held a conference, and then, a year
later, to be able to look back and
see the results of that conference.

Even after two-plus years in this
position, | still consider myself to
be the new kid on the block in the
Public Health Service. Many of my
colleagues and friends in the Pub-
lic Health Service have been fight-
ing the battle of inertia for much
longer than |. As the new kid, |
haven't had the years of triumph
and uncertainty that usually come
with the territory of public service.
But we've been very fortunate. In
this highly complex and emotion-
ally charged area of service to
handicapped children and adults
and their families, we've been able
to make significant, measurable
progress. I'm very proud of that —
as a public servant and as your Sur-
geon General — andI hope you feel

peals To

the same way. Ina single year, we
may have made a difference in the
lives of many hundreds of children
and their families.

My second reason is a little dif-
ferent. Over the past year, we’ve
been devoting our time to an issue
that brooks no obstruction, that
admits of no pettiness — an issue
that inspires people to offer the
best that is in them in order to
plan and implement such a worth-
while program. The problems
faced by ventilator-dependent
patients and their families can be
staggering. They are among the
most complex problems to appear
within the environment of medi-
cine. They require innovative, care-
ful relationships between medi-
cine and community social ser-
vices. These are also costly prob-
lems, requiring the help of accoun-
tants with the souls of saints. And
the problems are also inextricably
linked to a cluster of profound mys-

Me Sd eee AES AGL EE ERATE eon

 
teries — the mystery of the human
infant, the mystery of parenthood,
the mystery of personal courage,
and the mystery of family love.

As formidable a task as we set
for ourselves, | have to neverthe-
less say that it was the right task.
For too many years we had talked
about this problem and we sym-
pathized and commiserated and
had come up with a number of
steps to somehow lighten the bur-
den for both the ventilator-depen-
dent patient and his or her family.
But clearly we were not doing
enough.

Also, the way we were going
about it said quite a bit about our
intentions, generally in regard to
the solving of many other serious
socio-medical issues. The fact is,
if we could pull together our re-
sources in such a coherent and ef-
fective way that we could make
good things happen for ventilator-
dependent children, then we could
do good things for many, many
other disabled and Handicapped
children and adults.

You remember the words of
Cassius to Brutus in Shakespeare's
Julius Caesar. ‘The fault, dear
Brutus, is not in our stars but in
ourselves, that we are under-
lings.” We sooften defer tocircum-
stance, as the Romans deferred to
Caesar, and we become, in effect,
the “underlings” of circumstance.
That need not always be so. It isnot
written anywhere in the stars that
disabled children, attached to
machinery for the vital air of life,
must go without any other help
from their society. Nor is it written
anywhere that other disabled and
handicapped individuals, very
young ones tovery oldones, should
be left outside the pale of assis-
tance. That's just not the way we
want our society to be.

So, with this project, addressing
the needs of ventilator-dependent
children and their families, we

declared our intention to blamethe
stars no longer, but rather to look
to ourselves for what could be
done. And | can tell you it worked.

At the close of last December's
workshop, we affirmed our com-
mitment. to, turn into reality as
many of the workshop recommen-
dations as possible. With us today
are a number of the same people

 

C. Everett Koop

who had taken part in last year’s
program. And they have stories to
tell us — stories of hope, profes-
sionalism, character, and I'm
pleased to say, of success.

As an introduction to their con-
tributions, let me briefly report
on the status of the seven recom-
mendations and how we're doing
on them. As the top of the list last
year was the need to get as clear
a definition of the problem as we
could. And by that, ! don’t mean to
narrow down the problem and
thus, in a sense, trivialize many of
its aspects — quite the reverse. It
was felt that the public as well as
the medical and social service pro-
fessions needed to appreciate the
scope of the problem of care for

handicapped children and their
families. We did not feel — and
rightly so — that such appreciation
was Current. ,

| believe that the publication and
distribution of the proceedings
of the December workshop has
contributed to this task of clarify-
ing what the problem is. The work-
shop report does provide a com-
mon base of understanding for all
persons with an interest in this
problem.

Stimulated by this first recom-
mendation regarding the defini-
tion of the problem, the Crippled
Children’s Program at the Univer--
sity. of Illinois surveyed the status
of ventilator therapy and support
among: children in Illinois. This
makes Illinois the second state to
obtain this kind of information.
Pennsylvania was the first and has
been updating its information
base.

Asimilar study was alsobegunat
the University of California at San
Francisco. The health policy pro-
gram at the university is investi-
gating, for example, theincreasein

the last 25 years of the number of

days of limited activity among
children.’

Additional! efforts have included
a “National Conferenceon Chronic
llInesses in Children,’ conducted
last April by Vanderbilt University.
This conference has heiped us ina
number of ways, but I'll mention
in particular the attention it paid
to the issue of research priorities
regarding chronic illness among
children.

Then, just this past October in
Kalamazoo, MI, a three-day ‘‘In-
vitational Symposium on Ven-
tilator-Dependent Children’’ was
held. | understand it was quite a
success. A full report of that sym-
posium will soon be published in
Pediatrics magazine, and | urge
you all to watch for it. The Kalama-
zoo Symposium dealt with a num-
“If we could pull together our resources so
that we could make good things happen for ventilator-
dependent children, then we could do good things for many,
many other disabled and handicapped children and adults.”

ber of issues such as the need for
better data, the problems associ-
atedwith the financing of care from
both public and private. sources,
the research needs of this field,
and. the major task of education
that has to be done among parents,
patients, health and social service
professionals, and our communi-
ties in general.

The second recommendation of
the workshop last December con-
cerned the need for mode! stan-
dards. The workshop participants
feltweneededtospend much more
time and effort in developing stan-
dards that reflected the needs of
the family as well as the concern
for the quality of life of each dis-
abled child. To get this work started,
our division of Maternai and Child
Health awarded two grants for
special projects of regional and
national significance now known
as “Sprans” grants. One of these
is the project at the University of
lowa. It will explore the relation-
ships that develop between dis-
abled children and the health pro-
fessionals who take care of them.

The other, at the University of
Michigan, is looking at standards
of care that may be applied to re-
gionalized community health ser-
vices for children with diabetes.
Such a regionalized support net-
work would invoive health and
social service professionals, pri-
vate professional and voluntary
organizations, and local and state
governmental agencies. It’s an
ambitious and very worthwhile
project.

And that brings up the third
recommendation which was to
develop regionalized systems of

care for ventilator-dependent
children.

Three “Sprans” grants have
been awarded for the development
of regionalized systems that deal
specifically with ventilator-depen-
dent children. The accent is on
ways to help move children out of
institutional settings and get them
back home, or at least to a home-
like setting. Naturally, the role
played by effective community-
based support systems is crucial.

Six other ‘Sprans” grants have
been awarded for the development
of model systems to serve children
with arthritis. In all, the Public
Health Service has awarded close

” to $750,000 for the development

of regionalized systems of care
for disabled children.

Among the most exciting efforts
in this area is the contract awarded
by the Office of Human Develop-
ment Services to the John F. Ken-
nedy Institute in Baltimore. What
we hope to accomplish here is a
model for a working nationwide
referral network for the develop-
mentally disabled. Using today’s
sophisticated technology, itshould
be possible for a developmentally
disabled individual, or the physi-
cian, parents, or care-takers of
such an individual, to query a sin-
gle source for information about
that disability and pinpoint the best
or most appropriate places to get
help for the person so disabled —
help anywhere in the country or
possibly even the world.

This is no longer the “blue-sky”
thinking of visionaries. We know
it can be done because it is being

‘done here and there, albeit in

piece-meal fashion. But we look to

the Kennedy Institute to pull some
of these things together.

Under the terms of this award,
the strong features of two impor-
tant information systems are to be
combined and regionalized. One is
a data retrieval system for the par-
ticular use of practicing physi-
cians, and the other is accessible
by the general public.

The database for the physician-
oriented system was developed by
the Kennedy Institute in Baltimore,
using data supplied by the 38
university-affiliated facilities
around the country. As a matter of
fact the American Medical Associ-
ation itself has a contract with
Kennedy to bring the institute’s
data in as the fifth offering of the

AMA's Nationwide Medical In-

formation Network, or “Minet.”
itis available to every ‘‘Minet” sub-
scriber who has a desk-top com-
puter and a telephone.

This enterprise nicely pulls to-
gether government, the private
non-profit sector, and organized
medicine — in this case, the AMA
— to make information available to
physicians concerning access to
specialized care for their patients
and the presence of community
support services.

The other and more consumer-
oriented data system is now func-
tioning out of the University of
South Carolina to benefit citizens
of that state. The system carries
information on access to care and
community support services with-
in the state. However, any indi-
vidual or family member can get
into the system merely by dialing
a toll free “800” number. It isn’t
open only to physicians, for ex-
“I am setting as a personal objective the need
to keep track of all developments in the financing of care so
that the potential for increased support is fully realized and
every child who needs care will get it.”

ample.

‘The Kennedy Institute has anex-
cellent concept of just how sucha
network will function. By means
of the Kennedy Award, we hope to
expand the South Carolina model
to cover all the states in federal
Region IV, and they are, in addi-
tion to South Carolina, Alabama,
Florida, Georgia, Kentucky, Mis-
sissipp!, North Carolina, and Ten-
nessee. If that works — and | am
very optimistic that it will — then
the next step is to ‘go national”
as it were, andthus make available
to all our citizens the best infor-
mation and the most appropriate
resources relative to handicapping
conditions.

I'd like to add one additional
point. The Kennedy Grant is for
$95,000. It is probably the greatest
bargain today in the entire field
of health care and social service
R & D. But it also illustrates that
the size of the problem may not al-
ways determine the costliness of
the solution. As professionals in
this field, we need to keep our
minds open to what can be done
and then pay what's necessary.

| agree that such a sentiment is
easier to say than to live, and for
that reason, we have been moving
on the fourthrecommendation, the
one that deals with the financing
of care for children with disabili-
ties. Last May, we held another
kind of workshop in Washington,
D.C. on this problem.

The cost of care is an important
and continuing concern of the ad-
ministration. | can tell you that the
May workshop and a subsequent
meeting in June with officials of
the Health Care Financing Admin-

istration have served to throw
some light on more and better
ways — within existing law and
regulation — to help pay for more
and better service to handicapped
children.

But the problem will not go away

_ with the conduct of one workshop

or the scheduling of one meeting.
For that reason, | am setting as a
personal objective the needtokeep
track of all developments in the fi-
nancing of care so that the poten-
tial for increased support is fully
realized and every child who needs
care will get it. !knowthatisclearly
the feeling here in our host state
of Missouri, and | want to recog-

. nize the leadership given to this

complex issue by Governor Bond.

Three other recommendations
are worth mentioning, although
| would rather not take the time
to comment on them right now.
They are: /dentifying areas of po-
tential abuse. That is, controlling
costs, eliminating duplicative ser-
vices, monitoring care according
to model standards, and so on.
Another is incorporating principles
of care for children with disabili-
ties into training programs for
health professionals and parents
which is a straightforward enough
recommendation. | can report that
an Ad Hoc Committee dedicated to
following up this training recom-
mendation met last June, with
representation from acrossabroad
spectrum of health, social service
and educational specialties.

The seventh recommendation
from our first workshop has to do

‘ with supporting research in the

care of children with disabilities.
The Vanderbilt study that | men-

tioned earlier, has been helpful in-
giving us some direction in our
research strategy.

| -hope you feel as good as | do
about this record of achievement
over the past 12 months. It does
demonstrate that concerned citi-
zens — health and social service
professionals, government offi-
cials, and lay citizens — can focus
their interésts and energies on a
particular issue and make a dif-
ference in the outcome of the
public debate, and that disabled
children and adults will benefit.

In these remarks | have mea-
sured progress according to what's
been accomplished on the recom-
mendations of last year’s work-
shop. But many other things have
happened over the past year, and
! would be remiss if | did not recog-
nize that. In fact, | would like to pay
special attention to an event that
took place in Washington, D.C. on
November 29.

On that day, representatives of
nine national organizations came
together at a press conference.
They convened to announce their
agreement on a joint statement
entitled, “Principles of Treatment
of Disabled Infants.”’ The nine par-
ticipants included:

@ The American Academy of Pedi-
atrics

@The American Association of
University-Affiliated Programs

@ The American Association of
Mental Deficiency

@ The American Coalition of Citi-
zens with Disabilities

@ The Association for the Severely
Handicapped
@ The National Association of
Children’s Hospitals and Related
Institutions
@ The Association for Retarded
Citizens — United States
@ The National Down’s Syndrome
Congress
@® The Spina Bifada Association
of America ;
The first statement of theirstate-
ment reflects a great deal of social,
legal, and medical history of the
past few decades. It says, “Dis-
crimination of any type against any
individual with a disability/dis-
abilities, regardless of the nature
or severity of the disability, is mor-
ally and legally indefensible.’
The statement goes on to high-
light the “need for information”
which will ‘‘improve decision-
making about disabled individuals,

especially newborns.” Medical
care and the role of both govern-
ment and the community are also
dealt with in this statement. If
you have not read it, | urge you to
get a copy by writing directly to any
of the nine signatories.

At the beginning of this year,
! doubt that more than two or three
of these nine groups could have
agreed on such a broad statement,
although they all believe deeply
in the issues as well as in the need
to keep moving forward. As the
debate over the “Baby Doe” cases
unfolded, | think the need for ac-
commodation and consensus be-
came increasingly clear to every-
one. Yes, principles are at stake,
but they are not at risk.

Events have made this past year
both hectic and crowded, but it

has been a gratifying year as well.
I’ve not been gone that long from
the Children’s Hospital of Phila-
delphia that I’ve forgotten the
enormous personal and family
problems faced by a number of my
former patients — [little children.
who had to be hooked up to a ven-
tilator to get through the first few
months of life with a disability.

So the hard work of the past year
does have its very precious re-
wards. More children and more
adults are going to get a better
break in life, as a result of what
we've accomplished and what we’
intend to accomplish. It seems to
me that getting deeply involved
in this’ kind of issue is precisely
what an office such as mine ought
to do — or else — what are Surgeon
Generals for? @

 
ae ee ee ee

a

ty
("

UTM allem GEYER TLL CIEX SOLER Oh EL ULES) LL
.. Bond (left) and Al Kemp during one of the seminar breaks.

The Missouri Waiver: A Means Of

Decreasing Costs And lmproving
Health Care

We in Missouri are no strangers
to the idea of home andcommunity
based services. Last year we worked
for and signed legislation that
will mark the beginning of a new
era in providing for the needs of
our frail elderly. This legistation
provides for in-home and com-
munity care for elderly persons
who wish to stay in their homes
and who can do so only if they re-
ceive some very basic and very im-
portant in-home services. I believe
that we have proven in Missouri
that we can provide for a much
better quality of life andatthesame
time do so at savings.

Likewise, we knowthatthere are
children in our state who face very

by Christopher S. Bond

similar circumstances. As with the
elderly, these children face a
choice between the lifesaving care
they find in an institution, or the
love and warmth they so desper-
ately need from their families in
their own homes. Children with
multiple and complex handicaps
have a right to the best quality
of life possible. Many of these chil-
dren can realize the maximum in
potential for health, education,
self-fulfillment and self-support,
only with extensive medical, phys-
ical, social and psychological sup-
port. Hospital intensive care units
and nursing homes currently pro-
vide the bulk of these services; but
now we must find new ways to

ERT CT aL RRS US ATLL LEAL LY REE a LL

meet the needs of these children.
Missouri's waiver project is de-
signed to demonstrate the cost-
effectiveness of placing these chil-
dren, who currently must stay in
costly institutions, back into their
own homes and communities. Our
goal is to provide them an oppor-
tunity to grow and develop as nor-
mally as possible in their own
homes as members of their own
families. | believe that home and
community based services can
allow these children this kind of
growth and development, while
providing significant cost savings.
The Omnibus Budget Reconcil-
iation Act approved by Congress in
1981, accelerated the transfer of

 
fiscal and managerial responsibili-
ties for health programs from the
federal government to the state.
This allows the Secretary of the De-
partment of Health and Human
Services to approve, by waiver, any
state plan that includes home and
community based services as med-
ical assistance. Missouri's waiver
was proposed under these guide-
lines and had been sent to Secre-
tary Heckler. We expect a positive
response from the department in
the very near future.

The second objective is even
more important than the cost fac-
tor. Certainly we expect, and we
think we can demonstrate, the proj-
ect will be cost-effective. But most
important of all, the waivercanand
will improve the quality of life for
children who can be returned to
their homes. By expanding the
number and scope of services cov-
ered in a home based setting, chil-
dren can be discharged earlier and
treated in much more comfortable
and more familiar surroundings.
As a result, children will be re-
united with their families, and in
many cases, recovery time can be
shortened as their quality of life
improves.

As the Surgeon General pointed
out, very often children inhospitals
may encounter other diseases and
infections, but when they go back
to their homes they are in an en-
vironment in which they can grow,
not only because of the physical
conditions, but because of the love
and care that a family can give.

The specific services that willbe
offered under the Missouri waiver
will apply to needy children who
will be eligible for Medicaid ser-
vices. Some of these services are
already covered under the state
plan. But current limitations ren-
der them inadequate for the exten-
sive servicerequirements for these
children. With this waiver, the
state will pay for the medical trans-

portation for the children in need.
For example, if the child needs to
go back to the hospital, the state
will pay for the ambulance. The
state will also pay for the home-
maker or chore services to help the
family with homemaking services,
medical equipment and supplies,
physical therapy, and pharmacy
costs.

Co A
Christopher S. Bond

These services represent a very
sophisticated level of technology.
Indeed, it's often called High Tech
Home Health Care. They offer the
essential life support systems
these kids need to survive. They
also include the highest level of
skilled nursing care necessary to
maintain the patient’s quality of
life.

The concept behind the waiver
was developed while working very
closely with children’s hospitals
and medical professionals. Cer-

tainly we in state government
could not have done it on our own,
and we owe thanks to agreat many
dedicated physicians and other
health care professionals who
helped us pull together the infor-
mation and outline the standards
we must follow. With their combin-
ed efforts, we developed the princi-
ples and data which are contained
in the waiver. We think the idea of
a group approach is extremely im-
portant, because the children and
their families need the support of
all care providers. Their combined
efforts in bringing together the in-
formation is essential if we are to
identify the children needing these
services, provide the care, and
monitor their progress to the high-
est achievement of their potential
and welfare.

The extensive array of services
made available through this waiver
would enable the children to re-
ceive quality care in their own
homes. They extend not only tothe
child, but to the entire family unit.
This is a very important aspect of
the waiver because it recognizes
that not only does the patient have
special needs, but that the entire
family also must cope with these
responsibilities. The waiver alone,
however, does not make all of this
happen. Many other services are
needed if the programs are to be
successful. We must have support
from the medical community in-
cluding hospitals, physicians,
home health agencies, medical
equipment providers and a whole
host of medical personnel, as they
try to adapt to the changed life-
style that accompanies the pres-
ence of a handicapped child in the
home.

Studies have shown that fami-
lies of handicapped children appear
to be particularly vulnerable to the
experience of stress. In fact, in some
cases, this stress factor is so great
that some families have felt that

 
they have had no choice butto seek
institutional care for their children.
As a result, we must find new
methods of returning these chil-
dren to their own homes, which
will alleviate the stress as much as
possible. We believe and expect
this is precisely what the Missouri
waiver will do.

In addition, as | indicated earlier,
the waiver will be a cost-effective
mechanism for delivering aiterna-
tive sources of care to these chil-
dren. Implementation of the waiver
provisions will save approximately
$3500 per child over a year’s time.
This translates into savings for the
taxpayer, while clients are provid-
ed better services more efficiently
in their home surroundings.

We speak of the waiver of being

the magic instrument which will
save money and ensure quality.
Obviously, it’s a start, and when
you're dealing with government,
you're going to have paperwork.
Still, it is what this paperwork rep-
resents that is important. It repre-
sents a unified approach for chil-
dren and their parents to be suc-
cessfully reunited so that each
child can reach his or her full po-
tential in an environment most
conducive to recovery. Without the
expertise of the physician, the
medical needs of the child cannot
be totally identified. Without the
case manager, the various essen-
tial one-on-one Support tothe child
and the family would be missing.
Without the support and coopera-
tion of the service providers, the

entire program would not be pos-
sible. It’s through their knowledge
and care that these children are
able to be treated in their homes.
And obviously, without the care,
love and understanding of the par-
ents, these children would not
even have a small hope of sucess-
fully recovering, going on to lead
fulfilling lives.

It's this unity of purpose that
makes this program a success.
When ail the concerned parents
are striving for a common objec-
tive, many worthwhile goals can
be obtained. | believe the goals
contained in Missouri's waiver are
very humane and certainly with
your continued efforts and help
they are attainable and they will
be obtained. @

 
Gini Laurie

It is a privilege to be here with so
many persons dedicated to home
care services. | hope that we will
be able to make history repeat it-
self. | hope that by directing atten-
tion to ventilator-dependent per-
sons, all disabled persons will ben-
efit in the same way thatthe earlier
nationwide systems of home care
services benefited all of them.

That system, which existed from
1953 to 1959, freed hundreds and
hundreds of ventilator-dependent
polio survivors from custodial care
in hospitals — freed them to live
self-directed and productive lives
in their communities for 30 years.
That system was the genesis of the
independent living movement.
Those polio survivors have been
the role models of the spinal cord
injured and all other severely dis-
abled persons since the early
1950s. The lives of those polio sur-
vivors prove the value of homecare
services.

! was directly involved with the
system because my volunteering
started in 1949 and coincided with
the development of the regional

     

 

Mas en Ieee at ed game aR ae

respiratory polio centers which
created that home care system.
The centers were developed by the
National Foundation for Infantile
Paralysis to reduce the costly
custodial care of 400 ventilator-
dependent polio survivors of for-
mer epidemics who werescattered
across the country in hundreds of
hospitals. Sixteen regional centers
were established at medical
school/teaching hospitals to ac-
cept groups of those chronic venti-
latory patients and to develop a
positive approach to their care.
They were established just in
time for the very severe polio epi-
demics of the early 1950s which
filled all the 16 centers. Since no
one had had experience with such
numbers of seriously disabled per-
sons on ventilators, the centers
were a team learning experience
for everyone. The patients and
their families were important
members of that learning team
from the very beginning. The cen-
ters had weekly patient-staff con-
ferences, which werethekeytothe
integration of the program. Here,

CUE AT gat! Ue La
NEY ee ae Se ee gee ae a ee ee eS

Poho
Survivors
Prove The
Valne OF
Home Care
Services

by Gini Laurie

all of the services working with the
patient met to discuss with the pa-
tient his or her present status,
treatment plan, anticipated goals,
and time factors.

The first organized home care
system was created by Dr. John E.
Affeldt, who was the medical dir-
ector at Rancho Los Amigos Hospi-
tal in Los Angeles County in 1953.
At that time, Rancho had the larg-
est number of patients in the coun-
try — 158 who were ventilator-de-
pendent.

When Los Angeles County real-
ized that these long-term patients
were unnecessarily occupying
$37/day hospital beds when they
could be cared for athome for $10/
day with attendants, equipment
maintenance, and other support-
ing services, ahome care program
was set up and 152 went home.

A semi-trailer, with a complete
workshop, made the rounds reg-
ularly — maintaining and repair-
ing the ventilators. The hospital
functioned as an information ser-
vice to the polio survivors and to
their personal physicians — an al-
a

 

 

 

most umbilical cord relationship.

The transition from hospital to
home was gradual and meticu-
lously planned and scheduled. The
staff made home evaluations and
the necessary adaptations for ven-
tilators and accessibility. The first
visits were for hours, then a day,
then overnight, then weekends,
with emphasis on training the fam-
ily and the disabled individuals in
the use and maintenance of the
ventilators and in assisting each
one to resume his/her own place
in the family and the community.

At our center, the disabled indi-
viduals signed out when they left
for a trial visit and signed in when
they returned. In the interval, they
were on their own.

At first, attendants were trained
at the hospital. But it was soon
found that attendants changed so
often, it was a waste, and families
and the disabled individuals were
much better at training another
person to take care of personal
needs.

Each disabled individual and the
parents or the spouse had to be-
come experts in medical, personal,
and equipment needs and had tobe
able to delineate those needstothe
changing attendants or to whom-
ever was at hand.

The centers and their homecare
systems resulted in tremendous
savings of money, anda greater de-
gree of sulf-sufficiency and inde-
pendence for ventilator-depen-
dent people than had been thought
possible.

As of 1959, the National Founda-
tion reported the following sav-
ings: The average hospital time
was cut from one year to seven
months; home care costs were
1/10 to 1/4 of hospital care.

As of January 1959, the Nation-
al Foundation reported that there
were 1,756 ventilator-dependent
polio survivors in the United
States. Of these, 1,271 were at

 

home. The Foundation study esti-
mated that 40% of those at home
would have remained in custodial
care for the rest of their lives if the
center’s service systems had not
been the means of making the
transition from hospital to home
care. Unfortunately, the centers
lasted less than a decade. The pro-
grams became too costly for a vol-
untary organization when the pub-
lic lost interest in polio after the
vaccine. By 1959, the National
Foundation had to change its em-
phasis from polio to birth defects,
and to curtail the polio programs.

After the centers and the atten-
dant care programs stopped, the
polio survivors scrounged on their
own. Some found funds for atten-
dants from welfare or churches or
relatives. Others found foreign or
other relatively inexpensive live-
in attendants or part-time students
or retired neighbors. Later, some
moved to California, New York or
one of the few other states with
attendant care.

Fortunately, there were no
special segregated residences
built for ventilator-users. They
solved their problems as individ-
uals, not as a group of ventilator-
users. Remarkably few had to go to
nursing homes or VA hospitals.

Polio survivors have been among
the founders and the leaders of the
nationwide independent living
centers, which are sources of in-
formation on attendants. For at-
tendant care is the linchpin of in-
dependent living.

Throughout its 25 years, the Re-
habilitation Gazette has been a
proponent of home care and at-
tendants and a force for indepen-
dent living. It has documented the
lives of severely disabled persons
around the world and acted as an
international clearinghouse on
polio and ventilator dependency.

(For a brochure on its informa-
tion services and a list of the back

issues, write to Gazette Interna-
tional Networking institute (GIN),
4502 Maryland Avenue, St. Louis,
MO 63108 (314)361-0475.)
Among the ventilator-depen-
dent readers who have recounted
their family lives and their careers
in the Gazette are attorneys,
clergy, computer programmers,
engineers, physicists, professors,
physicians (who changed to such
no-hands fieids as radiology,
dermatology, psychiatry and
allergy), rehabilitation counselors,
therapists, teachers, and writers.
Their casual/careful approach to
travel is typical of their adaptation
to life with a ventilator. More than
40 ventilator-dependent persons
from aroundthe worldwere among
the 439registrants at the Gazette’s
Second International Post-Polio
Conference and Symposium on
Living Independently with Severe
Disability held here at this Shera-
ton in May of last year. We expect
even more at the third conference
which will be here in May 1985.
Many of the polio survivors have
been ventilator-dependent since
they were children. Some went to
grade and high school by tutor or
telephone. Others attended with
their ventilators and then went on
to college and graduate school.
Some were disabled while they
were students and others after
they had married and had children.
One example, is an Indiana phy-
sician who contracted polio in
1955, shortly before he graduated
from medical school. He received
his medical degree while he was
still hospitalized. After rehabili-
tation, he completed his internship
and residency. He practices der-
matology fulftime. He is married
and has two children. He uses oral
positive pressure continuously by
day and sleeps in an iron lung. He
has traveled widely, including a
recent trip to a medical meeting in
Australia. He rents or borrows an

 

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iron lung when he travels and he is work-
ing on a portable lung so that he can travel
extensively in Europe.

Another example, a Minnesota adoption
specialist, was disabled in 1950 at age
27. She and her husband, a psychologist,
have adopted 13 children, most of them
disabled. She uses a pneumobelt by day
and a trach-connected ventilator at night.

She is one of the few polio survivors in the
United States who uses a tracheostomy.
Most of the tracheostomies that were per-
formed at onset were later closed and other
means of ventilation used. They include many
permutations and combinations, such as:

@ Cuirass by day and rocking bed at night
@ Glossopharyngeal breathing by day and
lung or positive pressure by night

@ Oral positive pressure by day and lung
at night

Our panel will share more personal ex-
periences to emphasize the safety, econ-
omy, and satisfaction of home care and to
demonstrate the educational, vocational,
and productive potential of severly disabled
individuals, including those whe have been
ventilator-dependent for more than 30 years.

Finally, a few observations based on al-
most a lifetime of volunteering with per-
sons who are severly disabled...

The most important contributions of the
service system created by the regional
centers were:

@ The team approach that included the
disabled persons and the family in the plan-
ning

@ The positive attitude toward discharge
home

@ The training of disabled persons to train
attendants and to be experts in their own
care

@ The treating of each disabled person
as an individual. No group solutions. Nomini
institutions. Each individual was seen as
having the right to make decisions as to the
way in which to lead one’s life.

This is absolutely fundamental to the
dignity and integrity of each individual hu-
man being, and includes the right to place
one’s self at risk and the right to make mis-
takes — in other words — the right of per-
sons with disabilities to live as do all people
in society. @
 

Devices

by Jack Gettkow, PRD.

i'm only a representative of a
much larger group, those of us who
require artificial breathing aids in
order to live. My role here is to share
a bit of my personal experience
of 28 years using a breathing aid.

We ventilator-dependent people
are a group of individuals each with
our own unique solutions to our
life situations. | contracted polio
at age 19 onmysummerjob, which
was running a horseback riding
stable. This was following my first
year on scholarship at Yale. Ispent
24 of the next 32 months in six dif-
ferent hospitals, including the
National Foundation’s Respira-
tory Centers in Omaha and Chi-
cago. Initially, | was totally depen-
dent on the iron lung and nearly
totally paralyzed. It took me five
months to get out of the lung. |
still have quadriplegic involve-
ment, and use a motorized wheel-
chair.

Much of my breathing is still
voluntary; that is, if | were to pass

out or becomeunconscious! would
essentially stop breathing. | now
use a rocking bed to sleep on at
night. On trips such as this, | use
a portable chest respirator and a
chest shell. For the first six years,
| didn’t know how to glosso phar-
yngeal, or ‘‘frog’’ breathe, so | car-
ried a small positive pressure
blower with me with a transformer
in case | got tired or had to cough.
If | needed to, I'd just plug into the
nearest outlet to let the blower
breathe for me.

But ‘frog breathing’ has really
been a life saver for me and has
made my life much simpler. With-
out frog breathing | have a maxi-
mum vital capacity of 350cc’s,
but with frog breathing | have a
maximum vital capacity of 2800cc’s.
As you may know, frog breathing
is a method of pushing, or “‘swal-
lowing,’ mouthfuls of air with the
tongue into the lungs, which then
inflate a mouthful at a time. My
wife brought a book home from

Jack Genskow

 

work that showed me how to do it,
and the first time | yelled at her
she was delighted.

My wife and | met when she
was a student nurse at my third
hospital, and we started dating later
when | was in the Chicago Respira-
tory Center. We have two children
— Karen, 19, and Ken, 17. We've
traveled as a family unit all over
the country — from Florida and
Maine to Texas and Colorado,
usually driving, but sometimes
flying. Lil and | spent our 1961
honeymoon in the Bahamaswhere
her dad lived. When airlines
wouldn't let me fly without a doc-
tor’s permission, we found a small
island hopping boat that took us
across the Gulf.

Respiratory disabilities haven't
prevented opportunities from pre-
senting themselves in my life
either. | attended college with
the support of what was then the
Division of Vocational Rehabilita-
tion Services, and the March of

OU ae

 

Jack Genskow, PhD, is an associate professor at Sangamon

51
Dimes National Foundation. Then|
received fellowship support which
led to a PhD in counseling and
rehabilitation psychology. Illinois
DVR hired me to develop and direct
their Residential Evaluation Cen-
ter and Service. Currently, |’m
associate professor in human
development counseling at Sanga-
mon, State University. (The vice
president’s comment on my em-
ployment interview was, “‘! guess
it's what you have to say, not
how loud you say it, that’s im-
portant."’)

Although we haven't gottenrich,
| have paid more than $70,000
in personal income taxes back into
the economy since 1965.

One of the ironies of my life,
which | think has implications for
this conference, stems from my be-
ing turned down for rehabilitation
services by an illinois DVR coun-
selor in 1957 because | was too
severeiy disabled to benefit. The
irony in that is that currently I'm
appointed by Illinois Governor
Thompson, as chairman of that
State agency's Advisor’s Council.
Iinois and rehabilitation have
come a long way.

Important factors in living my life
with a disability included: 1} good
medical care and planning in the
early stages of recovery, especially
by the National Foundation of Res-
piratory Centers; 2) ongoing sup-
port and respiratory equipment,
provided, again, by the National
Foundation and Life Care Systems;
3) an effective social support sys-
tem, including first, my wife and
family, and then of course, friends;
and 4) an opportunity to live in the
community as anybody else where
!can have control of my own life.

The essential lesson to learn
from that counselor 25 years ago
is: Don't let your perception of
the severity of a young person's
disability today limit his or her
potential for tomorrow.
 

 

Parent Of
Ventilator-
Dependent

Child

Welcomes

Waiver

by Chuck Frame

Since we are talking about
waivers, | think it might be helpful
to explain what a waiver means to
those of us who have been living
under spend-downs for so long. It
means that the additional burden
of financial disaster isn’t added to
the already heavy load of dealing
with a disabling condition. it means
that the family who spends nearly
allitstimecaring for achildathome
for free doesn’t have to pay addi-
tional penalties for the privilege of
doing so. It means that a family of
five can keep more than $436 per
month for their own expenses. It
means siblings in the family can
continue developing their own tal-
ents like piano lessons and college
educations with less resentment
toward the disabled brother or sis-
ter.

Waivers also make the state-
ment that finally the family is rec-
ognized as part of the home care
process. It doesn't change atti-
tudes in one fell swoop, but it is
one step in getting rid of the con-
cept that when the child is in the
hospital, the responsibility is all on
the hospital. And if the child is ta-

ken home, the hospital relinquish-

es all care and the responsibility is

allon the parents — an either, “We

do it.” or “You do it,” attitude.

Home care needs to be a team,
effort.

We have been caring for our child,
Melissa, at home for three years
without any help — 24 hours aday,
seven days a week. The minuteshe
entered a local hospital, we were
hardly allowed to touch her, much
less convince them that turning
her head from one side to the other
during suctioning would help the
catheter go to each lung more eas-
ily. A half hour earlier we had re-
vived her from respiratory arrest
using oxygen and a rouche bag,
and suddenly we were excluded
from her care. No team work.

Insurance companies foster the
separation by paying for hospital
care, but by being reluctant to pay
for home care, no matter how
healthy the patients become at
home. Is this true with everyone
involved? Of course not. The fact
that there are families here with
children at home proves that there
are people from all areas involved

 

who've worked cooperatively tore-
solve these problems. Never-
theless, to have something like the
waiver finally say, “We recognize
your contribution and are willing
to do something about it,” is very
significant to us.

But there is still work to be done.
At present only 10 states have
made applications for the model
waiver available to them. That
leaves a lot of families in the other
states without relief. Why is there
such lack of cooperation? The in-
consistency from state to state is
very frustrating for families who
are trying to get help.

Hospitals need to develop more
follow-up programs once the pa-
tient is home. Yes, there is still
work to be done. But the benefits of
alternative care are worth the
efforts we put into overcoming
these problems. The patients are
healthier, costs are reduced, fam-
ilies have a better chance at being
families and life becomes more
than just existence. Melissa has
been in the hospital, and Melissa
has been home. And, for Melissa
and her family, home is better. @

Chuck Framezis president of Concerned Parents of. Ventilator-Dependent Childrerrin filinois: Inez

 
 

“Independent

 

After | became disabled in 1959,
| moved from my house into anurs-
ing home because | didn’t realize
| could live independently. | knew
| didn’t want to spend the rest of
my life ina nursing home — | wanted
to contribute to the community.
Then | began to watch other dis-
abled people going through some
of the same problems | was going
through, and | wanted to resolve
the situation.

Some disabled individuals in
Berkeley, CA, and in Massachu-
setts formed organizations which
dealt with the “independent liv-
ing’ concept. | visited the group
in California to see what they were
doing and came back to St. Louis
to look into the possibility of form-
ing a group of our own. Although
things move a little slower in Mis-
souri than in California, | began to
see disabled persons dealing with
their own problems. | thought if the
concept worked in Missouri, it could
work anywhere in this country.

Independent living evolves

a ee eae eg eal ee eee a gi ceu ee aca ae a Ue)

bled

Use

when disabled persons realize they
need physical or personal assis-
tance, and they pool their profes-
sional backgrounds and personal
experiences to form a base for
action. | lived in a nursing home
only because | needed physical
and financial support. | figured
the financial support was there if
| could only find the physical as-
sistance. | knew my own needs
and physica! limitations. One of
the main focuses of independent
living is to develop a good atten-
dant program. It seems to be one of
our biggest problems. When a dis-
abled individual needs attendant
services and comes into an inde-
pendent living center for that sup-
port, he orshecan learn from other
people’s experiences. They share
problems with others and get peer
support.

Role modeling also plays an im-
portant part of the independent
living program. That is when an
individual can come to the center
and observe other disabled per-

 

UE Ee Soe ales

sons going on with their lives ina
natural and normal way. They talk
about how they’re going to mow
their lawns, their families, and who
will do the shopping. The visitors
develop confidence because they
figure if others can live indepen-
dently, they can, too.

The independent living concept
is very important to the entire re-
habilitation process because dis-
abled individuals are becoming a
part of that rehabilitation process
at a professional level. We need
to realize that disabled individuals
play a large advocacy role in mak-
ing sure that favorable legisiation
is passed concerning their needs.
We've seen a lot of progress in
the area of the Rehabilitation Act
and rehabilitation programs, but
the only way we can continue to
grow is to expand the involvement
of disabled persons in the move-
ment. Health care professionals
and the handicapped need to work
hand-in-hand to accomplish some
of our goals. @

 
Persistence

Education Pays
Off For Disabled

by Deborah Phillips

| come from a long line of non-
_conformists — my mother's heart
is on the wrong side, and | have an
undiagnosed disability. When my
parents discovered that my dis-
ability was developing (I lost the
use of my arms when! was 7 years
old), they, as non-conformists do,
disregarded the advice of the ex-
perts and kept me in the parochial
school where | was enrolled and
never treated me differently from
anyone else.

The important thing to remem-
ber about dealing with people who
have disabilities is that there are
many resources in the community
from which to get help. My office
happens to be one, and there are
similar commissioners’ offices
in most of the major metropolitan
areas. | admit there are only a few
female commissioners and direc-
tors of these offices, but as women
with disabilities, that just means
we have a double problem to over-
come.

Our office is part of the metro-
politan city government, and we've
been in existence for five years —
not as part of the mayor's office,
but as part of the Department of
Human Services and the Depart-
ment of Welfare. Our job is two-
fold: One is to serve disabled peo-
ple and the other is to serve the

Deborah K. Phillips is the director of the Mayor's Office on the Disabled in St. Louis, MO.

parle ae
td Lees

city of St. Louis. We have the in-
teresting position of being a non-
political body whose primary func-
tion for city government is to ad-
vise and confer.

Anyone who works with archi-
tects or engineers knows thatthere
is absolutely nothing you can tell
them about accessibility. We came
into some money two years ago,
and the chief architect for the city
decided to make City Hall accessi-
ble. He contacted me for my input,
and | suggested he make one set of
the public bathrooms accessible
and that he lower the telephones
— things like that. There are also
about one thousand steps just to
get to the front door of the build-
ing. We've convinced our board of
public service to give usthe money,
so hopefully the Civil Courts build-
ing will be accessible for mobility
impaired people.

This is the kind of work we do,
and this is the kind of resource
we try to be for organizations like
Paraquad.

We don't take the approach that
everyone is alike. Our approach
is to match the individual person
to the resources that meet the
needs of that person. You have to
articulate your needs. It’s very im-
portant, especially in Missouri,
to be persistent. It is very low in

 

legislation for the disabled, and
because of that, some of the met-
ropolitan areas like St. Louis
and Kansas City have been more
progressive. When dealing with
a metropolitan municipal part
of government, you need to pre-
sent your information in a con-
cise way. It’s persistence and
perseverance that’s kept us in
business, and we're fortunate
that the city considers us one
of its priorities.

I never went to a special school,
and | don’t feel cheated or warped
from the experience. I've always
had the fortunate luck to have got-
ten a good education. Parents of
disabled children need to realize
that education is one way we can
overcome and become part of the
mainstream of society. Another
way is to develop an excellent
sense of humor.

It’s important to remember that
even though a person has a dis-
ability, it's exactly that, and that
having a disability does not make ~
us a homogenous group. Within ~
our population is as much diversity
as in any other population. And
that's a good reason to have an
office like mine and an organiza-
tion like Paraquad to work together
to help meet some of the needs of
disabled persons. @

 
 

The issues we will discuss today
are based on recent history — the
world-wide polio epidemic of the
1950s which led to the develop-
ment of new approaches to medi-
cal technology-and health care or-
ganization. The epidemic featured
a severe form of polio that took the
lives of countless children and
adults, often in their most produc-
tive years. People died because of
paralysis of their respiratory mus-
cles. The realization of the need
for artificial ventilation led to the
development of the modern tech-
niques of upper airway manage-
ment and mechanical ventilation
such as tracheostomy and positive
pressure ventilation. This new
technology resulted ina reduction
of mortality from respiratory failure
from 90% to 20%; however, many
of the survivors remained depen-
dent on ventilatory assistance —
some for a lifetime.

The comprehensive medical
needs of the polio survivors re-
quired an interdisciplinary health
care team of physicians and allied
health personnel. Anew approach
to the medical treatment of chronic
iliness and long-term disability
was developed. This medical chal-
lenge created the basis for the con-
cepts of health care including ad-
ministration, clinical methodology

by Allen Goldberg, MD

and research as featured in the
system of specialized respiratory
(polio) care centers.

One success of these special-
ized centers resulted from re-
search: The discovery of the polio
vaccine. This discovery in 1956 of
an effective preventative measure
against polio ail but eliminated one
of the medical scourges of all time.
But the “polio story” did not end
there for the survivors. Some had
to remain in institutions for un-
determined periods of time be-
cause they depended on breathing
machines and had nowhere else to
go. These were the first ventilator-
dependent children and adults.

They discovered new approach-
es to their care and answers to
their needs which were major di-
mensions of “self-help.” Working
with professionals, families,vol-
unteer organizations and friends,
they created outreaches from the
regional polio centers such as
home care and other community-
based living alternatives and sup-
port services. The centers and
home care resulted in a tremen-
dous financial savings and a greater
degree of independence and self-
sufficiency than was ever dreamed
possible for people so severely
disabled.

Since the creation of modern

critical care and rehabilitation
medicine from the polio experi-
ence, countless people with seri-
ous illnesses have survived who
would have died years ago. Some
of these survivors now constitute
a new population of people depen-
dent upon life-supportive tech-
nology. Examples include high
spinal cord injury, severe muscu-
lar dystrophy, anda variety of other
neurologic, muscular and pulmo-
nary diseases that previously re-
sulted in early death. These sur-
vivors must needlessly and inap-
propriately remain in institutions
at enormous cost in economic and
human terms because they have
no alternatives.

This is only part of the current
crisis in health care delivery. Ex-
cessive health care costs have
mostly exceeded our ability to pay.
In 1980, the health sector claimed
13¢ of every non-defense federal
budget dollar. The national health
expenditures approximated $70
billion in 1970 and $247 billion in
1980. Projected costs for 1990 are’
over $1 trillion! In 1970, national
expenditures accounted for 7.2%
of expanding gross national prod-
uct and, in 1990, it is projected to
account for 15%.

Our medical reimbursement
system is set up to pay for all acute

 
care costs, but it is not designed
for financing home care or other
suitable alternatives. Unless we
design better operational systems
and more adaptable reimburse-
ment mechanisms, we face the
danger of curtailment of services
and a resultant decline in the qual-
ity of life (or even survival) of many
disabled people.

In the United States, the possi-
bility for home care or alternatives
for chronic respiratory disabled
children and adults are limited to
a few demonstrations. For adults,
existing facilities include respira-
tory rehabilitation centers (Gold-
water Memorial Hospital Howard
A. Rush Respiratory Rehabilitation
Center in New York, The Institute
of Research and Rehabilitation in
Houston, TX, and Ranchos Los
Amigos in Downey, CA) which
evolved from their polio expert-
ence, some skilled nursing facili-
ties without rehabilitation ser-
vices, and scattered home care ex-
periences. Concerning children,
home care demonstration projects
have been implemented in Massa-
chusetts, Texas, Pennsylvania,
\flinois, and other states. A major
problem exists, however, because
we don’t know where all of these
children are or who is dealing with
them. A need exists to document
and register this information.

| have been aware of the regional
approach to ventilator-dependent
persons in England and France.
This year, | was given the oppor-
tunity by the World Rehabilitation
Fund to do a comprehensive study
on these programs. The Interna-
tional Exchange of Experts and In-
formation Program has been funded
by the National Institute of Handi-
capped Research to acquire knowl-
edge of exceptional programs,
practices, and policies in other
industrialized nations to enhance
the knowledge base of rehabilita-
tion in the United States. | will now

 

present a synopsis of my study, de-
scribing the programs and giving
their histories, analyzing opera-
tional systems, and suggesting
their benefits.

The English solution — the
“‘responaut program”

The first program concerns “res-
ponauts” who are ventilator-de-

 

 

Allen !. Goldberg

pendent persons who are severely
physically disabled and live inde-
pendently in England. They coined
the term ‘‘responauts’’ themselves
because, like the astronauts, they
ventured into the unknown. The
original responauts were polio sur-
vivors. In 1965, some of these
people stayed at home without any
established system of services and
some remained in polio centers
which were closing.

At the same time, the acute
intensive care unit just developed
by Goeffrey Spencer at St. Thomas’
Hospital, had long-term ventila-
tor-dependent survivors. To serve

both populations, the Phipps Res-
piratory Unit (PRU) at the South
Western Hospital was created.
From this location the responaut
program evolved as an organized
series of services available to
anyone in England who depends
upon prolonged mechanical ven-
tilation or who has a respiratory
disability that requires referral to
Dr. Spencer. The establishment
was a collaborative effort among
the health care professionals, pa-
tients and families, hospital ad-
ministrators, and government
authorities. The responauts initi-
ated public, private and govern-
ment involvement which resulted
in “Responaut Study,” a major
success of self-help.

The ‘‘Responaut Program” con-
sists of the following services:
@ Comprehensive medical/reha-
bilitation care in the PRU
@ Planning for a safe discharge to
home or a variety of community al-
ternatives
@ Home care, either provided by
one of 17 PRU attendant staff, who
live in the home of responauts, or
community-based caregivers, pro-
vided by a government agency or
government fund
@ Home maintenance service of
all respiratory, technical and per-
sonal needs onaregular andemer-
gency basis

The PRU remains the base unit
because this arrangement pro-
vides security for the patients,
professionals, and administrators,
and guarantees standards of care
and quality-assurance. It also pro-
vides the most coordinated opera-
tional basis as well as a medico-
legal basis for the protection of
all involved parties. The PRU is
where patients are first admitted
for evaluation, stabilization, and
eventual discharge. After the 1973
Responaut Research Project, all
participants could go home. This
allowed the PRU to function as a
short term unit for more acute ill-
nesses, minor adjustments in pre-
scriptions and outpatient assess-
ments. The hospital patient fength
of stay was 568 days in 1968; 18
days in 1975; and 11.9 days in
1983. Today, even though the res-
ponauts are home, they are still
the charge of St. Thomas’ Hospital.
The PRU team leaders which serve
the patients include a physician,
nurse, physical (respiratory) ther-
apist, and social worker. The cur-
rent health care/social legislation
in England provides a complex re-
imbursement policy, partly statu-
tory — partly discretionary. The
social worker coordinates a finan-
cial program for each responaut
among a variety of options from
local and health authorities.

To complement home care, the
PRU home maintenance service
{which includes three medical
technicians, three service ve-
hicles, a hospital-based workshop
and inventory of major equipment
and supplies) coordinates a very
personal service fromthe PRU. The
service does routine maintenance
of the equipment and minor/major
emergency replacement. Since its
onset, 411 patients have been
served by the “Responaut Pro-
gram;” as of June 1983, 223 per-
sons were benefitting from it.

Because not all responauts have
families to go home to, they require
other options and services in order
to live somewhat independently in
the community. These services
were not created specifically to
meet the needs of the responauts;
however, they take advantage of
the existing resources designed for
other purposes. Examples include
the Netley Holiday Home (Respitel
Care) and the Chailey Heritage
Hospital and School (education
and rehabilitation engineering).

The financial basis of the respo-
naut program is the original ar-
rangement between St. Thomas’

Hospital and the Department of
Health and Social Security; legis-
lation, which provides both statu-
tory and discretionary funding;
and supplemental funds from a
variety of charities.

The French approach — the
regional association

As in England, the solution for
the ventilator-dependent person in
France evolved from the efforts of
multiple concerned parties. These
people looked for community op-
tions for groups of polio survivors
who faced no other choice but pro-
longed institutionalization. The
former polio centers in which they
lived, evolved into intensive care
and rehabilitation centers. The
concept created was “ventilator
assistance at home.”

Two not-for-profit organizations
helped to implement the concept
for the polio survivors. The Asso-
ciation of Mutual Help for Polioand
Handicapped People (ADEP) and
the Association of the Lyon Region
for the Fight Against Polio (ALLP)
evolved into the “core’’ of the cost
effective regional solutions for
ventilator and oxygen dependent
persons in the greater Paris and
Lyon regions. They also formedthe
base for a new national organiza-
tion, the National Association for
Home Care of Respiratory Insuf-
ficiency (ANTADIR). This national
organization deals with issues
such as mass purchasing, national
Statistics and surveys, collabor-
ative research, and information
exchange.

ADEP was initially created to
improve hospital life and later
developed as a means to send pa-
tients home or on to independent
living alternatives. It was created
by and for the polio survivors who
had to remain forever in the Ray-
mond-Poincare Hospital, Gareches,
France. It is now a multipurpose

not-for-profit organization con-
tracted to provide home ventila-
tor services, community-based
living alternatives for ventilator-
dependent adults, and documen-
tation of information for the dem-
onstration of an effective self-help
group which has expanded to help
others. As ADEP grew to meet
existing demands, it received re-
quests from the government to
serve as the model for develop-
ment of other regional associa-
tions and to develop a national or-
ganization to deal with issues ap-
propriately. Currently, ADEP serves
over 650 persons.

The services of ADEP are de-
scribed in a contract betweenthree
major reimbursement agencies
and ADEP. This arrangementis the
basis of all negotiations with any
other reimbursement resources.
The prospective reimbursement
package permits ADEP to provide
the following services:

@ Acquisition, delivery, installa-
tion of a large variety of durable
medical equipment

@ Oxygen (tank/extractor)

@ Provision of all required acces-
sories
@ Routine/emergency home
maintenance service

@ Required electrical modifica-
tions for equipment/home

@ Required installation of tele-
phone

@ Communication with medical
resources (community, institu-
tional); regional coordination of
services/care

@ Administration of the program
(quality assurance)

@ Evaluation of the programs (ac-
countability)

ADEP Home Care Program is
divided into four services: admis-
sions, maintenance (technical
service), medical social service,
and administration. The admis-
sions process creates all neces-
sary documentation required for
 

The current health care/social legislation
im England provides a complex reimbursement policy,
partly statutory — partly diserctionary.

each new prescription of service
such as medical and administra-
tive records, requests for equip-
ment loan or purchase, reimburse-
ment, communication with third
party sources, etc. They also con-
tact an ADEP nurse who is initially
involved with patient education
and preparation for home.

The home maintenance service
consists of 10 persons including
secretaries, staff, technician, in-
ventory persons, and a driver.
Eleven vehicles stand by, fully
stocked and prepared to make ma-
jor repairs. Six of the vehicles are
radio-dispatched, making an
emergency service possible by an
on-call technician. All the tech-
nicians are qualified in mechanics
and/or electronics and have had
on-the-job training. Preventive
maintenance is provided on a bi-
monthly. basis. The service guar-
antees a greater quality assurance,
decreased risk, increased secur-
ity and it reduces costs.

The medical social service pro-
vides medical evaluation and fol-
low-up, supervised by two physi-
cian specialists. These physicians
also make home visits when re-
quested by ADEP nurses or tech-
nicians. The ADEP nurses visit the
patient in the hospital to deter-
mine what equipment is needed
and to plan required inventory.

The accounting and administra-
tion of ADEP Assistance is cen-
tralized with several designated
administrative assistants and ac-
countants who report to a director.
The center keeps all records, sta-
ustics and creates monthly ac-
counts of all activities, equipment
and patient status. This organized
documentation of services facili-

tates communication with the
sources of third party payment.

The founder and president of
ADEP, Andre Dessertine, created
the organization asameanstohelp
others help themselves and insti-
tuted the philosophy which imple-
ments:

@ Greatest possible degree of in-
dependence compatible with phys-
ical status

@ Reinsertion into urban setting
for a full opportunity for a social
life

@ Medical security to degree re-
quired by the medical condition

ADEP emphasizes medical
security to reassure medical per-
sonnel, public authorities and the
disabled person that alternatives
to institutionalization were appro-
priate. In special housing set up
for the disabled (Foyer d’ADEP),
each ventilator-dependent person
has several methods to reach per-
sonal care attendants or medical
staff who are on call. The medical
care is given by a combination of
health care professionals and
well trained, highly motivated
personal caregivers.

In 1964, the ADEP Documen-
tation Center was established
which stored information concern-
ing the studies and experiments
which aided the disabled. The
center was officially established
as an Information and Documen-
tation Service in 1974, and cur-
rently available to anyone con-
cerned with issues related to dis-
ability. Today the service receives
over 100 French and other lan-
guage periodicals from multiple
sources. The information is sys-
tematically classified according
to defined themes. The center has

also proven to be helpful in re-
search.

The other organization which
exists in France, the ALLP (Lyon-
naise Regional Association for the
Fight Against Polio) is also a not-
for-profit organization which co-
ordinates the total program and
services required by the ventiia-
tor-dependent persons inLyonand
the surrounding areas. It, too, as
the services in London and Paris,
originally served the polio survi-
vors.

During the polio epidemics of the
1950s, the Croix-Rousse Hospital
in Lyon was designated as the cen-
ter of expertise for the manage-
ment of acute respiratory failure.
Care was provided in a polio unit:
The Service of Professor Sedallian.
When the hospital reached capac-
ity inthe mid 1950s, itwas thought
the ventilator-dependent patients
might do better at home. A me-
chanical device was developed
(Vincent-Gandot) and the first pa-
tient went home in September
1960. That person is still at home
and is living a fuil life with his wife
and family.

In the first years of the program,
the hospital staff volunteered their
services. In 1961, the ALLP began
to send home non-polio ventila-
tor-dependent patients. Later in
1967, the leaders of ALLP nego-
tiated a contract with regional re-
imbursement authorities who pro-
vided a prospective payment of $5
per patient. Most recently, the
ALLP has begun to serve oxygen-
dependent persons at the request
of the Regional Social Security.

The original polio center is now
a multidisciplinary adult ICU with
an acute care and chronic respira-
“Im England, chawities play a strong advocacy and
political role, and have a great impact on Sovernment
policies for the disabled.”

tory rehabilitation section, both
under the direction of Professor
Dominique Robert. It plays a major
role in the preparation of patients,
families and caregivers for the
transition to home.

The ALLP is located on the hos-
pital grounds of the Croix-Rousse,
adjacent to the Pavillion Paul
Sedallion. The physicians deter-
mine the standards of respiratory
care and lend quality assurance
to the program. Primary medical
care is given by a local physician.
The RN role is determined by the
needs of the patient at home. The
nurse understands the patient's
status in each situation. The
visiting nurse makes home visits
where her role is to implement
quality assurance, continuity
of care and to evaluate all prob-
lems.

The medical technician has re-
sponsibility for both the equipment
and the medical and psychological
needs of the client. In addition to
pre-scheduled routine mainte-
nance visits, the technician is
available at alltimesfor emergency
needs. These people are factory-
trained and are responsible for the
repair of all equipment.

The services of the ALLP are
spelled out in a contract which
features categories for prospective
reimbursement. The rate depends
upon the need for ventilation,
tracheostomy care, and oxygen,
including the method of oxygen
administration as well as the source.
The prospective charges range
.from $4/day to $22/day with a
mean rate of $9/day. The contract
spells out the specific objectives
of the program, the criteria for the
program, the daily prospective

rate, the description of covered
services and personnel, and the
interrelationship of involved par-
ties. It also specifies required doc-
umentation and explains the role
of an advisory committee. At-
tached to the contract is a com-
plete home ventilator care proto-
col. Currently, ALLP serves over
450 persons.

Another essential component of
the successful transition from
institution to home in the Lyon
regional program is the interme-
diary (secondary) center. It permits
the fullest preparation and educa-
tion of each ventilator-dependent
person at a location with signifi-
cant cost reduction. Of the three
centers in the Lyon region, Belle-
combe is the largest with a capac-
ity of 130. The average length of stay
at this transitional care center is
55 days, during which time the pa-
tient is well-educated in his/her
equipment and self-care.

Despite the fact that the ALLP
existed, a few ventilator-depen-
dent polio survivors remained for
years at the Croix-Rousse Hos-
pital. As an alternative to pro-
longed institutionalization, the
ALLP followed the model of ADEP
and created the Foyer d’ALLP. All
of the survivors obtained education
but they could not earn an income
or they lost their government
benefits. However, they used their
education in managing their lives
and their homes. .

The ADEP and.ALLP do not pro-
vide primary caregivers. In France,
it is impossible. to have 24-hour
nursing surveillance; therefore,
ventilator-dependent persons at
home require a highly committed
family to participate in care. The

reasons for unavailability are that
there is simply an inadequate
number of available health care
professionals, and those who are
available, prefer to work indepen-
dently at a higher rate. There are
times, however, in the home when
Situations arise and the family
must call in help. At these times,
it is possible to have a new type of
personal caregiver. These people
may have two roles: 1) Domestic
(housekeeping, feeding, and cook-
ing); and 2) Health (physical care,
personal hygiene). For chronic res-
piratory patients, often the duties
require medical expertise, The
Association provides these care-
givers with 8-15 days training for
this purpose.

The “‘auxiliare de vie” as the
caregivers are known, is a recent
development in France. The posi-
tion has just risen to a professional
status by federal regulation.

Developing an American
approach

To help apply these programs
from England and France to the
national-regional-local. realities
in the United States, it is-neces-
sary to look at the reasons why
these programs were successful.

In England, charities play a
strong advocacy and political role;
and have a great impacton govern-
ment policies for the disabled.
Charities develop new. services
and programs based upon demon-
strated. needs. Government and
charities. work together in the pro-
cess of mutual cooperation.
-..In France, all programs are coor-
dinated by not-for-profit voluntary
organizations (associations) which
provide quality assurance, case-
“in Bhamee, alll

pEritechuinmycagortanfoms

cro.cecani ined hy maHim.
ms @esodcin ome) wiih provtie

qualitviassurances rand accountsalbilitved

monitoring, and accountability,
resulting in cost containment.
They. are smail, flexible, permit-
ting multiple interdependent roles
for members.

itis also helpful to look at the
evolution of these services and
their reimbursement. In England,
all programs began with a leader, a
small group of concerned people,
and private money. Each had an
initial success which captured the
government leaders’ attention and
later led to government support,
commitment, and appropriations
for the program. In France, the pro-
grams evolved from successful
initial demonstrations followed
by negotiation with multiple reim-
bursement resources. Once a pro-
spective rate for defined services
was established, the operation
grew to meet expanding needs.

The funding of England's home
care services is supported with
public funds based upon legisla-

tion. Ventilators at home are pre- |

scribed by a physician and must be
provided by law. Charities supple-
ment costs not covered by public
programs. All health care and per-
sonal service expenditures are
part of a finite allotment which
must be divided among multiple
competitive and worthwhile or-
ganizations.

France's funding is based mainly
upon public monies. Reimburse-
ment is distributed by agencies
which represent a region and/or
vocation. Muitiple interest groups
compete for a finite sum of health
care funds, somewhat like the
public/private health care financ-
ing in the United States. The re-
imbursement agencies have cho-

 

sen to utilize the regional associa-
tion. as responsible case-mana-
gers.

The attitude toward disability in

England seems to be one of con-'_

cern; due to adequate media cover-
age, parliamentary discussion and
effective advocacy by charities.

This favorable awareness also

exists: in France due to similar
reasons. In addition, France: es-
tablished an organization to deal
with important public policy issues
concerning disability.

What began as the ‘’Responaut
Program” ina local areainEngland
grew to national scope due to the
expertise developed and the num-
ber. of persons who required spe-
cial services. Programs. in France
were designed to meet geographic,
political and economic realities.
As the demands for the service
grew, a study was done which led
to the creation of a nationalorgani-
zation. There now exists some con-
cern about regional/national role
definitions.

In both England and France, a
base unit of excellence (health
care institution) guarantees a high
standard of care. The base unit
also serves as a facility for the
stabilization of the patient, initial
family education, training and
preparation for home, and for
meeting subsequent health care
needs. Both English and French
programs highlight personal, high
quality home care surveillance
which guarantees competent and
reliable preventive maintenance,
emergency repair service, and
communication to all involved per-
sons.

The equipment in both countries

is simple and reliable. Home ven-.
tilators/respirators do not have to

‘meet dictated standards and regu-

lations. The quality is: assured by
the home-unit: Also, in-both coun-
tries, malpractice: suits are: less
likely because: legal contingency
fees are. not incentives, and the
services provided are. quite’ per-

_ sonal.
The United States reality

The United States is larger geo-
graphically and more complex
socially than England and France.
Uniform health care and personal
service delivery is far more of a
challenge: Services for the dis-
abled are currently determined
politically more by state and local
policy than by regional or federal
regulations or legislation. Quality
of care often is more a result of
social or economic class — or even
chancel

The economics of health care
delivery are vastly different than
during the past three decades.
During that period of post-war
economic boom, there was an
enormous growth of the health
care system. There were vast qual-
itative and quantitative improve-
ments in the provision of health
care. This was only possible due
to the nation’s overall economic
well-being in the ‘60s and ‘70s.
Much of this was spurred by the
comprehensive entitlement pro-
grarns which permitted healthcare
by a cost-reimbursement policy
with no limit in sight. All national
opinion polls showed strong public
support for improving and expand-
ing health care during this period
— at any cost.
VUiiiess uxe decitin ratiier a7penafomal apes ani]

meinioeament med hms, wre faces thre

dimer af qoritiinentt

Ciesnvicss, dented Iheritth core, ami dtedine fin the qualthy afr

However, since the mid ‘70s, we
have. had a vastly different situa-
tion. The nation itself experienced
a deterioration: of economic per-
formance: by indications such as
slowed economic: growth, con-
tinued inflation, and reduced pur-

chasing power of the consumer.

This was accompanied by achange
in public mood. Many people found
it difficult to handle expenses of
routine health care. People be-
came concerned about economic
issues and were opposed toalimit-
less increased spending on health
care. At the same time, the public
demanded the right of access to
appropriate services.

There has been a real decline in
public spending for health care
and in methods of reimbursement.
(Change from ‘’Cost-reimburse-
ment” to fixed, pre-set payment
determined by “diagnostic related
groups," to ‘‘prospective pay-
ment,” to “preferred provider or-
ganizations’’ who respond to “re-
quests for proposals.’’) Often these
systems do not have built-in flexi-
bility required to adapt to unique
solutions and rapidly changing
conditions.

Also philanthropic spending for
health care has been reduced. The
private sector has responded to a
“hidden tax shift’' (moving the bur-
den of reimbursement from public
to private sources) with aretrench-
ment, and a re-thinking of who,
what and how they will reimburse
present health care delivery and
new proposed models.

Hospitals, our major provider of
care since the 1960s, now face an
economic austerity which will
limit new program development

and expansion of services. At the
same time, a huge private sector

home care industry is preparing to
serve the disabled. It is estimated
in’ Naisbitt’s: book, Megatrends;
_ that the growth of the home health

care industry will be 20-fold over
the: period from 1970-1990.
Major: public policy decisions

“are about to be made concerning

home health care. Up to now; pri-

vate and. public reimbursement:
authorities have not yet developed:

or adapted mechanisms. to: meet

“the home care equipment and ser-

vice funding requirements:. There
are gross inequalities based upon
the financial resources of various

social classes. All involved: are:
concerned about issues stich: as: -
quality-assurance: and malprac-:

tice-liability, a: major hidden: cost

of health care in America. Policy.
experts appropriately. wonder if _
the trend to deinstitutionalize will”

lead to better health care at less

cost.

Throughout my study, | attempted

to ascertain if there was applica-.—

bility of the English and French
models in the United States. | be-
lieve that reimbursement and _li-

ability are the major barriers:to.

developing appropriate; cost-
effective, personal’ services: for
severely-disabled persons.
Although the major reimburse-
ment systems for European oper-
ating programs.! observed are
public, there are certain elements
that make my observation abroad
applicable to the United States:
@ All good programs start pri-
vately through charitable or volun-
tary organizations
@ All evolve with the patience and

cooperation of multiple involved
interests working together i in part-

nership: (government, consum r,
organizational, professional) =

 

@ All reimbursement issues | ave
similar conflicts. The same issues
are within ‘‘government systems”
(finite allotments) as are in-a pri-
vate/public system _ o
@ Allgood. programs must be ini-
tiated.in small scope with adefined
focus. They must demonstrate
their: worth: before growth and
government support. aL

_@ Most programs can adapt to
meet multiple needs and hence
‘optimize available resources:

The current reality in the United

‘States is that excessive health
care costs have nearly exceeded’

our ability to pay. Furthermore,
they are no.longer acceptable: to

thirdpartypaymentsources, public
_policy experts, and the general

public. New concepts and options
are being considered including
home health care, increased con-
sumer involvement, prospective
reimbursement, and a wholistic
approach-to wellness. Ail this de-
mands. a reassessment of how

we as health care professionals

play our role to the ultimate bene-
fit of those we care about: Our
patients:

The: English and French pro-
grams have independently shown
that the complex challenges of the
ventilator-dependent person can
be creatively faced and met. When
caring people join and find com-
mon concerns for mutual benefits,
conflicting problems become op-
portunities for positive interaction.
By the right process, solutions can
meet all needs. Health care institu-

  

  
tions can be better utilized for their
appropriate mission, and the health
care professional’s time can be
‘better directed. Money can be
saved by utilizing motivated, less
expensive personnel who can work
with qualified allied health: per-
sonnel, and. consumers can:have
a high quality, personal service
which meets their needs because
they have hadinputintothe design.
Third party payors can have quality
assurance and competent case
management resulting in cost
containment while government
officials can meet their political
agendas. Voluntary (not-for-prof-
it) organizations can play an im-
portant and worthwhile role of
social responsibility.

Currently in the United States,

.there-are-many organizations that

care about people {religious ser-
vice organizations, and community
based voluntary groups such as
Rotary, Lions, Kiwanis , Veterans’
groups, etc.) and have ‘'grass
roots’” resources. Many such or-
ganizations. search for new direc-
tions and challenges. They can pro-
vide personal, local support. How-
ever, the funding required is
beyond the capability of any volun-
tary. organizations. The cost of
home care services is«still high.
Funding must be found from mul-
tiple sources, including public and
private sector monies whichcanbe
channeled: responsibly by a well-
defined, well-coordinated re-
imbursement process.

Unless we design better opera-

tional systems and reimbursement
mechanisms, we face the danger
of curtailment of services, denied
health care, and the resultant de-
cline in the quality of life, or even
survival, of some disabled persons.
Past demonstrations in America,
and those described in this report
frony: abroad, have proven that a
higher quality of care can be more
appropriately provided in the fam-
ily or another community option at
a cost savings. Wecan provide bet-
ter services for less money. The
solutions of the problem of the ven-
tilator-dependent person will have
far-reaching and universal bene-
fits. The solutions can have appro-
priate: application to many other
complex health care and societal
problems we face today. @

 
Home Care Standards
Present Unique Medical And
Legal Challenge

It was nearly 25 years ago that
the American Medical Association
{AMA} finally decided that jet
travel was medically safe. | men-
tion this curious fact only to under-
score the amazing pace at which
the process of technological inno-
vation. challenges the advance-
ment of human health care. Nearly
15 years ago, severe birth defects
such as when the baby’s stomach
organs are outside the body, had
a 85% mortality rate. Today that
rate is down to 5%. Ten years ago,
Spina bifida had a mortality rate
of 90% — today the survival rate is
90%.

People with complex and mul-
tiple handicaps have the right to
the best quality of life possible.
This can be achieved only by pro-
viding them with medical, physical,
social and psychological care suf-
ficient to heip them realize their
maximum potential for health,
education and self-fulfillment. To
realize these goals, economic bar-
riers to health care are being re-
moved by the federal government.
As an example, the 1976 Social
Security Amendment provides
Social security insurance for dis-
abled children. Many of these pro-
grams identify and provide ser-
vices to crippled children because
their health care costs are truly
catastrophic.

Since modern medical technol-
ogy has increased thesurvival rate
of individuals with multiple and
complex health care needs, the
1980s bring a real need todevelop
alternate methods of providing this
health care. Institutional inten-
sive care units, where the bulk of

by Larry Shinnick
these patients now receive their
care, have provided an extremely
high level of care, but have also
been found to have two major
drawbacks.

First, for optimum growth and
development, the individual needs
to be in the loving environment of
his home as a member of the fam-
ily. Secondly, institutional care
is an expensive method of health
care. It has been shown recently
that the same services can be pro-
vided in the home with approxi-
mately a 60% reduction in costs.

As we all know, federal DRG
{Diagnosis Related Group) regula-
tions recently became’ effective
Oct. 1, 1983. DRGs restrict the
limits of reimbursement a hospital
is entitled to receive for the care
and services rendered to Medicare
eligible patients. It has been pre-
dicted strongly and repeatedly that
the number of and sophistication of
services rendered in the home en-
vironment will be dramatically in-
creased as a direct result of DRGs
and by the passage of Medicaid
waivers for certain services.

It seems clear that these two
items are indicative of an increased
awareness that high-tech services
can be efficiently and safely ren-
dered in the home environment. It
is reasonable to predict that there
will ultimately be a greater em-
phasis by both state and federal
governments as well as other re-
imbursement mechanisms to en-
courage such servicesinthe home.
Thus, home care professionals will
have to become cognizant of and
willing to assume any and all in-
creased and transferred liability

Larry Shinnick is general counsel and Secretary at Upjohn Health Care Services.

 

risk associated with the rendition
of services in the home. oe
Until recently, ventilator-depen-
dent children and adults havebeen
cared for on an in-patient, in-hos-
pital basis. Now sufficient tech-
nology exists to permit a signif-
icant number of ventilator patients
to be cared for in their own home.
By analogy then, it’s possible to
examine the various types of risks
which health care personnel face
in a hospital setting, and forecast
the types of risks the home health
care personnel should be willing
and able to accept in the homecare
Setting. It’s long been established
that physicians, nurses and other
allied health care personnel must
adhere to certain standards of care
or be held accountable if the pa-
tient suffers injury or harm as a
direct result of the providers falling
below that standard of care. Gen-
erally speaking, that standard is
known as that of a reasonable man
—— a standard by which a person is
judged in accordance with what a
reasonable person with similar
training would have done under
the same circumstances. By such
a standard, the nurse, medical
technician, or physician can be
evaluated in his or her community
by the standards that exist in that
community. But this standard falls
short of providing specific answers
because it must, by its nature, be
applied on a case-by-case basis.
Establishing standards for the
homecare of ventiiator-dependent
patients presentsa unique medical
and legal challenge. Consequent-
ly, home health care professionals
should possess the requisite train-
ing and education enabling themto
properly deal specifically in the
home environment. Monitoring,
supervision, provision of medica-
tion, observation and notation of
important warning signs, patient
charting, patient assistance, and
timely summoning of physician
assistance are all responsibilities
that are present in the home set-
ting. In theory, the duties and re-
sponsibilities of treating ventila-
tor-dependent patients in the
home would be extremely similar
to treating ventilator-dependent
patients in a hospital setting. The
legal liabilities associated there-
with would also be quite similar.

There are legal precedents that
would adequately demonstrate
that physicians and nurses and
technicians have been success-
fully sued for violating applicable
standards of care. By way of illus-
tration only, heaith care profes-
sionals have been found liable
recently in the following situa-
tions:

1. Failure of physical therapist to
follow and adhere to the physi-
cian’s order.

2. Negligent administration of an
enema and of failure to report
timely to the attending physician.
3. Mislabeling, mishandling of a
blood sample by a nurse.

4. Improper injection of medication
by a nurse.

5. Insufficient number of nurses
assisting a patient in walking to
a restroom.

These examples are drawn from
the hospital environment but can
be reasonably expected to occur in
the patient's home. A more recent
case occurred in Hawaii where a
hospital was found to be negligent
in failing to properly monitor a
child's post-operative tonsillec-
tomy. Specifically, it was found
that the delay in discovering the
child's respiratory and cardiac
arrest was the result of failure to

monitor on a “minute-by-minute
basis.’ One can readily see from
this example the clear analogy to
the degree of care observation in
monitoring that would likely ac-
company ventilator-dependent
cases in the home care setting.

| do not believe that home care
is unnecessarily risky or danger-
ous. Home health care providers
are well-advised, not only to con-
sider, but also to evaluate and pre-
pare for the potential liabilities
that precedent has shown to exist.

While providing a safer and more
comfortable environment for the
patient, there are many things that
home health care providers may do
to substantially minimize malprac-
tice risks discussed earlier. Among
these are the following:

@ Careful screening of potential
employee credentials.

@ Increased emphasis on continu-
ing education.

@ Keeping abreast of state-of-the-
art technology.

Maipractice cases are definitely
moving in the direction of requir-
ing physicians and nurses and
other health care personnel to re-
main current with the latest devel-
opments in medical technology. A
central focus of such cases is
prompt, complete and accurate
patient charting, and adequate
nurse supervision.

An important factor which will
undoubtedly have legal ramifica-
tions, although the cases are not
yet present in the books, is an
acknowledgment by home care
professionals that the atmosphere
of caring for ventilator-dependent
persons in their own home may
vary substantially from the tradi-
tional in-hospital setting. Patients,
their families, and their relatives
may be more lenient about adher-
ing to physician and nurse orders
in the home. Once a health proto-
col has been established, it will be
absolutely critical for home care

providers to assure strict compli-
ance in spite of the attitude of the
parents and families.

Another important factor in pro-
viding care for the ventilator-de-
pendent persons in the homeisthe
social and psychological advan-
tages. As a parent myself, | can
readily envision that a child re-
ceiving health care in the home
would enjoy a better outlook. on
life: This certainly tends to offset
the incremental increased risk of
heaith care delivery outside the in-
Stitutional setting.

It's my belief that recentdevelop-
ments in medical technology per-
mit health care personnel to. take
advantage of the psycho-social
value associated with caring for a
patient in the home setting. Eco-
nomic incentives intended-to fos:
ter home care are now in place
with the advent of Medicaid waiv-
ers and prospective reimburse-
ment plans. Legal liabilities and
malpractice concerns are-ever
present, and present reasonable
questions which must be addressed
openly. The study and analysis. of
liabilities that have arisen in the
hospital setting, can’ be used to
forecast home care legal risks.
Such analysis permits the con-
clusion that recent advancements
in medical and communication
technology, taken together with
continuing education, substan-
tially reduce the legal risks asso-
ciated with home care. Physicians
and nurses and other health care
professionals are quite correct that
the benefits of the home care set-
ting far outweigh the incremental
risk of legal liability. The consci-
entious home care provider will be
setting new standards for reason-
able care in the community. These
standards do not exist at the pres-
ent time, but there is no reason to
fear their development. There is no
Substitute for adequate training

and for ongoing education. @
St. Louis

Meets Needs Of Children
With Chronic Treatable

For the past quarter of acentury, |
have had the opportunity to care for
children and adolescents who
have serious, chronic, treatable
disease, both as a pediatric endo-
crinologist andasa medical admin-
istrator. My definition of ‘serious,
chronic, treatable disease” is this:
Serious — Requiring a team of
health care professionals
Chronic — Of many years dura-
tion; eg., three to a lifetime.
Treatable — \ncluding drugs,
surgery and counseling
Prognosis — Often not cured, but
with therapy, patients look, feel,
act better and become functional
adults. Without therapy, many will
not function, nor will they survive.

There are children in St. Louis
with serious, chronic treatable
diseases where | think the health
care system is doing a reasonable
job of meeting their needs. One ex-
ample concerns a hemophiliac
who is subject to recurrent episodes
of serious bleeding requiring fre-
quent transfusions and help from
a health team of professionals.
Now the patient's care, including
intravenous therapy, is given at
home by parents, patients and
visiting nurses. The fiscal support
includes the following: Depart-
ment of Health, Education and
Welfare — Great Plains Regional

Disease

by Dr. Thomas Aceto

Comprehensive Diagnostic and
Treatment Center; Missouri Crip-
pled Children’s Services; Bi-State
Hemophilia Society; Missouri He-
mophilia Program; and the IIlinois
State Hemophilia Program. How-
ever, the three organizations which
absorb the cost are St. Louis Uni-
versity Hospital, Cardinal Glennon
Memorial Hospital for Children/
Sisters of St. Mary, and the St. Louis
University School of Medicine.

The second group of children |!
think are making progress are
those with learning disabilities.
These children are problematic in
identification, classification and
management. Their testing is very
time consuming, requiring ap-
proximately 20 hours of profes-
sional time per patient. Subse-
quent education and management
plus re-evaluation are time con-
suming also.

In this state, as part of the ter-
tiary care system, these children
whose families have limited in-
comes can be evaluated and helped
via the local school system. Fiscal
aid is provided through the State of
Missouri Regional Center, Mis-
souri Crippled Children’s Services,
Missouri Medicaid, and Knights
of Columbus. Again, absorbing the
costs are Cardinal Glennon Me-
morial and the St. Louis University

School of Medicine.

Forming another groupare those
children with cancer. They need
many medications, much labora-
tory re-evaluation, a full team of
health care professionals and in
some cases, major surgery and
subsequent radiation. Generally
these children are offered treat-
ments on an ambulatory basis;
however, there need to be periods
of hospitalization occasionally.
In these cases, the fiscal support
comes from the Candlelighters,
Leukemia Society, American Can-
cer Society, Tricia Phillips Chil-
dren’s Cancer Fund, Cardinal
Glennon Memorial/Sisters of St.
Mary and St. Louis University
School of Medicine.

Another bright spot concernsthe
program for the mentally retarded
adults. In the city of Cape Girar-
deau there is a remarkable pro-
gram for mentally retarded adults
who are capable of working. Inthat
program are sheltered workshops,
supervised recreation, supervised
independent living, and transpor-
tation. The financial support forthe
program comes from the Social
Security income of the individual
client, contributions from the
Knights of Columbus, Missouri
Department of Mental Health, and
United Way.

 

 

ee eM Cate Larter ar Department of Pediatrics at Cardinal Glennon eer dag
eR aR LM La) oo eo

 
 

ste toe ay
ae One

 

 

i

Shah sates

2h Ee

 

These are all examples of pro-
grams which offer some financial
support for families who are medi-
cally indigent. Children with other
serious, chronic, treatable dis-
eases are not so fortunate. There
is no fiscal support for the med-
ically indigent except for the gen-
erosity of individual physicians
and individual religious orders for
the following:

1. Children with hypothalamic
pituitary tumors

2. Babies and children who have
been battered

3. Teenagers and young adults
with complications of diabetes
meilitus

4. Children with chronic inflam-
matory disease of the bowel

5. The multiply handicapped

6. Children with asthma

For some, virtually no fiscal as-
sistance is available. This group
encompasses teenagers with
serious, chronic, emotional prob-
lems.

As we think about the homecare
of ventilator-dependent children
and adults, let us remember that
they exemplify the problems of a
large group of children, adoles-
cents and adults who have serious,
chronic, treatable diseases, but
nevertheless, are individuals who
can contribute to society and can
enjoy their lives. Currently, many
of these people receive less than
optimal care because of inade-
quacies in the funding of the health
care system and in the health care
providers. The problem requires
additional changes such as redi-
rection of crippled children’s funds
from the categorical. Third-party
payment for ambulatory care,
home care, and psychological sup-
port must be instituted. We needto
make optimal health care a na-
tional priority andtoviewthe needs
of the medically indigent as a pri-
ority as well as the needs of chil-
dren. @

 

 

 

 

i
Nebraska Strives To

Care For

Ventilator-Dependent
Children At Home

As a medical director of Services
for Crippled Children in Nebraska,
| would like to educate you as to
what services are available. May-
be this will give us a springboard
as to what other things can be ac-
complished nationwide.

Crippled Children’s programs in
Nebraska were expanded a great
deal under the governorship of
J.J. Exon, who is now a senator.
He and his wife were very, very in-
terested in chronically disabled
children, and through his efforts,
our budget was increased con-
siderably and a lot of categories
were included in our program
which were not in the program be-
fore.

We have a unique position in
Nebraska where all children who
are provided any care under 94142
are coordinated through Services
for Crippled Children. So, every
child who is disabled in the state
of Nebraska has a record in my
office, whether they are eligible
financially for aid from Crippled
Children’s or not. We are basically

by Dale Ebers, MD

constituted to provide help for the
medically indigent family — notthe
indigent family. The medical costs
of some of these diseases and con-
ditions can be horrendous — you
can run through thousands of dol-
lars so fast you can't believe it.
If the family or patient is Medicaid
eligible, we ask Medicaid people
to do the financing, and we do the
case management. [n that way, we
have more uniformcontrol overthe
quality of care that is delivered,
regardiess of where that delivery
is made in the state.

We hold the basic premise that
all children should be cared for at
home, or as close to home as pos-
sible. That is probably a personal
bias that | hope is reinforced in
the state.

We have enlarged the area of
hyperalimentation. Hyperalimen-
tation means there is a permanent
central line into the cardiovascular
system, which creates a great pos-
sibility of infection. Eighty percent
of the kids who are on a program
for hyperalimentation have a short

bowel syndrome or intractible
diahrrea and are usually between
6 and 18 months of age. Dr. Van-
derhoff, who trained at UCLA and
came back to Nebraska and wanted
to get into this, came to me and
asked if Crippled Children’s could
support this program in the hos-
pital. We discussed the problem
and decided we would have to find
a way to do treatment at home.
Vanderhoff has accomplished this.
He developed protocol and he has
a nurse who spends about a week
teaching parents how to prepare
the solutions for treatment. She
then supports them at home by
visiting or calling once a day for
the first few weeks, and then vis-
its once a week. Vanderhoff usu-
ally sees them once a month. The
program’s been going on for about
three years now, and this past
year it cost $100,000. If you would
have had those kids in the hospital,
we would have been spending in
the range of half a million dollars.
Obviously, that is a very cost ef-
fective procedure. @ ,

Dale Ebers, MD, is medical director for Services for Crippled Children, State of Nebraska, in Lincoln, NE.

 

75
Critically Ill
Newborns Require
Special Treatment

| would like to share some
thoughts with you about a group
of youngsters who are ventilator
dependent. These are infants with
chronic lung disease. By and large
when you hear neonatologists
talking about chronic lung disease,
we are talking about broncho-
pulmonary displasia (BPD). We be-
lieve this is a laterogenic disease
that results from the use of high
concentrations of oxygen and from
trauma to the lungs caused by ven-
tilation. Regardless of the causes,
these babies are our version of ven-
tilator-dependent patients.

I'd like to share with you the
problems these babies create for
us in neonatal intensive care, some
of the problems! think we create for
them. Then | would like to share a
possible solution to some of these
problems.

In November, there were eight
infants less that 12 months old re-
ceiving care in lowa hospitals be-
cause they were ventilator de-
pendent. Seven were housed at
University Hospitals in lowa City,
and three others had just died with-
in the past several weeks. Pres-
ently there are no lowa infants
receiving home ventilator care.
There are some older children on
ventilators, but not alarge number,

probably somewhere in the range |

of four to 10 in the entire state.
There are six infants with chronic
lung disease that are home and re-
quire supplemental oxygen and

by Herman A. Hein, MD

another two that are housed at
University Hospitals. To the best of
my knowledge there are no lowa
infants receiving care in chronic
care facilities because they are
ventilator or oxygen dependent.

The number of beds available to
provide care for critically ill new-
borns is a chronic problem in most
neonatal intensive care units. |
am not prepared to discuss why
neonatal intensive care units have
not expanded their capabilities to
meet this need, but! must notethat
financial matters, including the
availability of nursing personnel,
are important issues. Contrary to
popular opinion, which is consis-
tent with the hue and cry over ris-
ing costs of medical care, many
hospitals are not financially sol-
vent. A large number of hospitals
that provide tertiary neonatal in-
tensive care are teaching institu-
tions, and these institutions are
experiencing severe financial con-
straints. Accordingly, the hope for
expanding facilities by these insti-
tutions is not a reality in the near
future.

In the meantime, babies with
chronic lung disease are occupy-
ing beds two, four or six months in
the neonatal intensive care units.
Eventually the chronically ill ven-
tilator-dependent infant is moved
to another area of the hospital,
usually to a pediatric intensive
care unit or to an intermediate type
of unit on a pediatric ward. The

move is not based on the baby’s or
the infant's needs, but rather on
the availability of a bed. The net
effect of this type of uncontrolled
transfer is fragmentation of care.
Related to this matter is the gen-
eral issue of primary care givers for
these infants. Most people would
agree that as things evolve, the
neonatologists are the ones who
are and should be responsible for
these babies. But once the baby
leaves the NICU, this really isn’t
true in many instances. Becauseof
the heavy workload of most neona-
tologists, the logistical type of prob-
lem is a major one in trying to give
care when the babies are scattered
throughout the hospital. For ex-
ample, in our hospital, once a
baby leaves the NICU and goes to
the pediatric ICU, it’s athree-block
walk. If the baby goes over to the
intermediate level on one of our
pediatric wards, it adds another
two blocks. Logistically it gets to
be a major problem, resulting in
fragmentary care. In my exper-
ience there really hasn't been an-
other group of physicians that has
leaped forward and said, “I’m sure
willing and eager to take care of
these kiddies with chronic lung
disease.” | guess | thought that pe-
diatric pulmonologists would be
first in line, but again, in our insti-
tution that simply has not been the
case. They are willing to consult
if requested, but they are not avail-
able to take over the primary care.

Herman A. Hein, MD, is professor of pediatrics at the University of lowa — Department of Pediatrics and is director oflowa e114
Perinatal Care Program in lowa City. IA.

 
The problems that infants with
chronic lung disease present are
complex and varied — respiratory,
cardiovascular, nutritional,
growth and development, surgical
and many, many more. If we are go-
ing to be abie to provide home care
for ventilator-dependent infants,
it is important that coordination
of hospital and community re-
sources begin some considerable
time before this move is antici-
pated. Given the current state of
affairs, | am not very optimisticthat
this is going to occur with any reg-
ularity. To help solve the prob-
lems, | believe there are several
things we can do.

Facilities should be developed
within acute care institutions that
provide neonatal intensive care to

house all ventilator-dependent in-
fants who are six weeks of age or
older and are making no progress
in being weaned from the ventila-
tor. Medica! supervision should be
provided by a neonatologist or a
pediatric pulmonologist, and ap-
propriate consultation can be re-
quested as needed. | would also
suggest that a cadre of nurses pro-
vide care to the children in this
special unit. Using this approach,
the following advantages emerge:
1) location of care giving ceases to
be a problem; 2) there is continuity
of care; 3) coordination with com-
munity resources can be antici-
pated and begun with sufficient
lead time; 4) knowledge will ac-
cumulate because of the consis-
tency of care given by nurses as

well as physicians and other pro-
viders; and 5) practical, problem«
oriented clinical research can be
fostered.

| believe it’s important for us to
begin to accumulate a solid basis
of knowledge about this vexing
problem, including not only as-
pects of prevention but also those
measures thatarerelatedtochron-
ic care giving. This information
should be refined and disseminat-
ed nationwide as soon as possible.
Perhaps if major teaching institu-
tions can combine this group of in-
fants in one clinical area and care-
fully document the results of care
giving, we can begin to make pro-
gress in what currently is a frus-
trating experience for parents and
caregivers alike. @
_- in state government through fed-
~~ eral_action in 1981, including the
st “ possibility. for application for state ©

waivers. We view the current ap-

ra’ plication for home health care for

myc ie ues against it. They said : .
_Missouri was not in the best fiscal Ags
“shape “and ‘that ‘the Division of |

- Health “in. the state had a major

but.was located i in. ‘the Department

of Social Sciences. The fact that.
the Division of Health is linked to

-the ‘Division “of Family Services

through’ the. . Department of the>
Social Services, is the bright spot.
The biggest challenge was how to .

get the best possible health care

system established in the. state.

within resources available.
Although the resources are on

the verge of shrinking again, many

new opportunities have come to us

a ee ea tee MD; re.
vs defferson City, MOQ.

. the chronically ill child as a major
_ breakthrough. It allows us to get

past many of the bureaucratic : stum-

“bling blocks that have been built at
_- the state, local and federal levels,
liability” in the fact that it was re-
“sponsible for environmental health, ,

to get to the heart of the problem.
‘The possibility of delivering ex-

‘gellent careina humane 2 Setting at

less cost is an immensely desirable

~ goal for all of us. We look forward
‘to the’ challenge of implementing
this program as soon as we get
“approval: from our friends at the
- federal level. | think the environ-
: ment in this century will be one of
very tight fiscal resources and one

in which only through innovation,

.- cooperation and teamwork will we
‘ continue to deliver much needed

services. @

 
Kansas Uses

Innovative Programs
To Prevent —
Hospitalization

by Patricia T. Schloesser, MD

Atthe turn of the century, a Kan-.

sas journalist, William Allen White,
became nationally known for his
editorial “What's the Matter with
Kansas?” His theme was that “when
anything is going to happen in this
country, it happens first in Kansas.”

Although Kansas has had many
“firsts” this century in public
health and mental health program-
ming, home care ventilator de-
pendent persons have not yet be-
come reality. Kansas does have,
however, a number of innovative
out-of-hospital programs designed
to prevent hospitalization in the
first place or when necessary, to
decrease the length of stay. This
preventive approach offers a more
normal life experience for the
handicapped andtheirfamilies and
is cost effective as well. Some pro-
files of programs follow.

Cystic fibrosis program

_ In 1966 the Kansas legislature
appropriated funds to the Depart-
ment of Health and Environmentto

develop services for all cystic fibro-
sis children in the state. Since the
appropriation was small, the de-
partment designed an out-patient
program which lessened the need
for hospitalization. Funds were
earmarked for the provision of

home inhalation equipment and
medications at. no.cost to the
families. Centralized. purchasing
resulted in considerable savings.
Diagnostic and case. management
clinics were established in Wichita
and Kansas City. A survey of parents
three years after this program was
begun, indicated that fewer hos-
pitalizations were necessary and
the family morale had been greatly
improved. Currently, there are 239
active patients on the registry with
30 over 21 years of age. Most CF chil-
dren are progressing inschool with
their peer group and are becoming
self-sufficient in early adulthood.
In recent years, the Crippled and
Chronically 11 Children’s Program
has paid for hospitalization for cys-
tic fibrosis patients whose families
are financially eligible. Third-party
reimbursement has also strength-
ened the financial base of the pro-
gram in recent years. In one urban
area, cystic fibrosis patients are
being discharged from the hospital
on intravenous therapy at home.
This has decreased the average
hospital stay from four weeks to
one.

Chronic obstructive pulmonary
disease (COPD)

The Kansas Lung Association

in cooperation with physicians
in urban and-rural areas is en-
couraging. home based programs
in which patients are taught 13
respiratory skills through indi-
vidual or group instruction using
a self-study manual. A decreased
need for hospitalization is an-
ticipated.

Diabetes-outpatient manage-
ment of the young diabetic
patient

The Kansas Medicaid program
has had some positive experi-
ences with the outpatient manage-
ment of severe diabetic children.

One of their patients is a 14-year

old girl who had been in a Wichita
hospital for a total of eight months
in a 12-month period including 32
days in intensive care, at a total
cost to the agency of $59,000.
Medicaid authorized the purchase
of an expensive piece of equip-
ment, an insulin pump, along with
a glucometer for monitoring, her
blood sugar, so that she could be
discharged home. The child has
remained home for 18 months with
no hospitalizations. The Medicaid
agency has now authorized the
purchase of additional insulin
pumps for two other teenagers
with equally good results. Dr.

Patricia T. Scholesser, MD, is medical director of the Maternal and Child Health Programs, State of Kansas, in Topeka, KS.

 
Richard Guthrie, Director of the
Kansas Regional Diabetic Center
in Wichita, reports that there are
64 persons currently ontheinsulin
pump at home managed by: this
center. He projects that the total
cost of the patient. workup and
equipment and supplies for the
first year would be about $8,000
compared to an average of $30,000
per year for repeated hospitaliza-
tions, With 64 patients a year, the
difference between home cost and
hospital cost is $1,300,000. If we
project this figure. nationally, such
@ program could save $50 million
per year.

Prevention of prematurity
programs

The cost of premature care
can best be illustrated by a case

history as follows. M.H. was born
prematurely and weighed slightly
over two pounds. His mother was
17 years old and had dropped out
of the 10th grade with the preg-
nancy. She had received late and
inadequate prenatal care. The in-
fant was transferred to the inten-
Sive care unit at a. Level! 3 hospital
in Kansas City by ambulance for
management of the prematurity
and associated respiratory prob-
lems: He: remained in care for 24
days and was returned to a Level 2
hospital in his homecommunity for
14 days of convalescent care. The
cost of this hospital care was
$50,000. This infant is developing
normally and = special education
costs have been avoided by the
excellent perinatal network pro-
gram established by the Maternal

and Chiid Health Block Program.

If the family had resided in acom-

munity with the special Maternity
and Infant Care Program for teen-
agers (there are 10 such programs
across the state), this mother
would have received improvedpre-
natal care andthe WIC supplemen-
tal food program with the likeli-
hood of preventing the birth of a
premature‘infant. Since the cost of
this preventive health service for
mother and infants averages
$2,000, a cost savings for this pa-
tient would be $48,000.

In summary, 1 would echo
William. Allen. White and Say,
“There’s nothing the matter with
Kansas” as Kansas responds with
practical approaches for home
based programs to meet the needs
of families: @
daily, hourly. and week!
Hintor-dependent patie

had committed major

their lives to this population. We :
didn’t have rigid agenda or time
frames - — we had groupsin which _
we talked about ventilator-depen-
dent children — how ta get them
home, their problems, whatourex-_

periences. have been, what. we

should look forward to in the fu

ture. Consequently, we wanted to

bring these people together and
share experiences for three main :

reasons.

“One is best summarized By the ee

last few words that Betty \ Warten-

en..she: finished her. speech,

said, “I thank you for’ not pulling |

plug on Donnie.’'

The second experience occurred :

a the endofthe seminar when the

very. imposing figure of the Sur- |

geon General of the United States.

stood before us and took the: gavel

and hit it hard and said, ‘1

posed to make decisions declare. "
that this: conference:is'a:success, —
and we're adjourned.” Andweleft.

“Those two moments come to-
gether to make our first point: We
cannot give up on these children,
and. we shall not give up on these

capable of being — soci:
tonally. a and physically. S

These children need abetter ‘home:

They need better alternative living

solutions — if not theiro
then a home- like setting

‘thing else. — :
Third; one of the majo ssueswe 5
_ faceafter medical stabilityis, “How
are we going to pay for these chil-
_ dren to go home?” We've heardthe —
- figures, and they are hard to be-
berg spoke at the Surgeon Gener-
al’s Workshop in Washington. ft —
made the hair on my neck stand up —
n the back, and | shivered, Betty,

lieve. Do you really believe that we

saved the state of Illinois $5 million -

in the last four years. on these

. children? These figures 3 are-over-
- whelming..

-The-first:time | was interviewed

for a local paper, they asked how

much the children’s care: cost. |
said some of these children’ scare
costs $45,000 a month. They put

down $45,000 a year. | went back
“to them and said, it's:$46,000 a

_ month, notayear—a month. They

said that’ snot possible.

- “It's not. ent, possible: it's hap- .
“pening. a

Therefore, * we “addressed ! fund-
ing issues. at Brook Lodge. You
would be interested. to know that
we have no iron-clad solutions.

‘cost savings

i children were not intendedtolive

inan intensive care unit ora Aigh-
risk” nursery. High- -risk” nurseries
have other reasons. for being. ,

i approach them
as colleagues, they. are willing to
listen: and will sometimes revise
their policiesi in order tocover these
children.

"Third, other. ‘than the Crippled
Chil dren’ § programs, Title XIX, and

the Maternal Child Health Block |

Grant, there are really no other. |

‘sources of funding, with the ex-
_ ception of grants and gifts. In Il-

linois. and other states, we can
save approximately $22,000 a
month by creating a little ambu-
latory intensive care unit in the
home. It looks like a home, but yet
it has equipment — a-ventilator, a
suctiam machine, and sometimesa
backup generator or ventilator.

. We did not spend all of our time
on funding at that conference. We
also discussed the role of parents.
The parents are critical — they are
really the case managers — they
run the-show and make the opera- .
tion occur. We also talked aboutin-
volving the parents in training. :

Another: item we emphasized
was. the: differences that occur
from family to family, child to child,
situation to. situation. They’re all
different. We had to goto our tenth

Eugene E. Bilotti, MSW, is administrator of the Disabled Children’s Program in Springfield, IL and is TY ante CETERA ce
Crippled Children at the University of Illinois.

 
  
 
 

ae prototype and | no average: child
We can’t really describe a v
tilator-dependent child: therefore

 

‘we have to have exhaustive de-
these kids in
the home. How detailed? I recently
-Sawonethatran almost 400 pages.
Children’ sHome Health Networki is
committed to. “considering every

tailed care plans fo

 

 

  

   
  
   
 
 
  

open, make sure the lights are ol
and then, while: ‘Saying that, we
have to keep saying to ourselves

 

“saying, “This ae acan

 

date for home discharge, and that.

 

 

hurts us very much. —
We area government that.

 

ruled by regulations, therefore we

are developing standards, guide-

lines, and regulations for getting

these children home.
_. Home care is not always enough
_— we need other alternative kinds

of places for these children to live |

‘such as medical foster homes: Al-
though it may sound impossible,

  
    
  

   
 

“home. You have to keep the roads

  
 
 
  

 

the Department of Children and -
amily Services” put an ad in the.
aper concerning a disabled child,
4 nd they had 24 people respond. _
‘Half of the respondents werenurs-.. ~
eS, and two or three of them were
espiratory therapists. Out of that.
‘group we turned out a very, very _
fine candidate for a medical foster
home. Weare intheprocess nowof _
drawing. up some. guidelines and
directions for medical foster homes.
‘There are people who would like to
‘take these children in se
‘Sometimes it's not appropriate
‘and sometimes they cannot leave.
‘Therefore, we have to think about
other forms: — like hospital schools;...°
upgrading of nursing facilities, oth- _
er pediatric facilities that will gear _
their way. toward: this population. :
-= In order’ to serve this popula-—
“ation, you must have very. con-
‘trolled standards and planned

 

guidelines. The whole system that
we are talking. about is. running
against the streams. of medicine:

dren belong in hospitals.” Now
we're saying, “Maybe not. "Maybe

they need to be in the home, and”

they are going home in large num-

 

 
  

_ that is best for them
develop?

bers. The Brook Lodge Conference

. devoted part of its time to the lan-
guage of the future. We looked at
what is going to happen to these

high-tech. ventilator-dependent

_ children inthe future. We mustnot
_ just think of the child alone, but of
the family, the community and of
all the institutions that. are in-
volved. One of the speakers, Dr.
_Kohrman, said that we must bring _
» together: people who are working
with this kind of population to de-
to their homes.

termine. their: educational needs.

_ What kind of planning do they have
for the future? What kind of re-
-gionalization do we need in order

to put these children i in the least

a restrictive. environment? Can we
“not say that the goal for this popu-

 

lation is to bring them to. the place

  

done before, so we need to collab-
-~ orate and findoutfromoneanother
what is.being done. The hours are
For years we've said,’ ‘Very ill chil- Us long, the demands great, and the
_ payoffs sometimes very hardtosee

--andvery hardto measure: but pedi-

atric practiceis exciting aswethink
about home care in the future. o

83