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

     

 

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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,

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Survivors
Prove The
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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. @