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