Editor's Column
by
Tim Benjamin
This month Access Press is
looking at myasthenia gravis. When we first started talking
about this disability we were not too sure where we would find someone
with myasthenia gravis for a personal view; none of us seemed to
know much about it. We all decided to do a little research and spend
some time thinking about it, and we acknowledged that maybe we would
just have to highlight a more well-known disability. Then we discovered
at the Access Press board meeting that JoAnn Enos, one of our longtime
board members and board secretary, lives with myasthenia gravis.
I had thought that I had learned quite a bit about JoAnn over the
years, but I had no knowledge of her having this disability. Learning
this underscored the need for attention and press coverage. Then
in a second wake-up incident, as soon as we started doing research
and found some interesting information from a national organization,
we discovered that that organization is right upstairs in our office
building.
How blinded, uninformed
can we be? How many hidden disabilities do we, even as the disability
community, not know much about? It’s
possible that some of our close friends and colleagues may be struggling
with a “hidden” disability and we are not even aware.
I also think this story of discovery underscores our need to constantly
become more aware of the needs of, not only our fellow people with
disabilities, but all in society who are struggling with things not
recognized as disabilities but which in many ways are disabilities!
How much of a disability is it to live with a below-poverty income,
as many of us with disabilities do right along with our PCA’s.
How able are people with alcohol and/or drug addiction? Or those
who are functionally illiterate or unable to speak fluent English?
Those questions are
on my mind in part, I guess, because another article we are printing
this month comes from the Disabled
Immigrant Association, representing
a community where one of the major problems is literacy and lack
of education, which only enables people to get low-income jobs.
But this organization is doing a great job and they’ve
asked for help from our larger disability community in Minnesota.
I think it’s important that we do help, and I encourage the
directors of the major disability organizations to offer these folks
some help in whatever form. They need classrooms or space they can
use as classrooms, as well as people willing to volunteer to teach
the English (ESL) that these immigrants will need to find their way
through our maze of social services. They also need help finding
funding resources—yes, I know we all need help with this, but
let’s reach out!
As many of you know,
the state’s personal
care attendant program has been making some changes. Many of the changes are needed, but
the unintended consequences may be very costly. There are definitely
some increases in administrative costs, both to the provider agencies
and to the state agencies that oversee the program. Unfortunately,
the administrative cost increases to the provider agencies will probably
trickle down to mean lower wages for the PCA’s themselves.
Lower wages for PCAs means a smaller pool of available PCAs for the
clients. With a smaller pool of PCAs, the unintended consequences
will mean a faster turnover of PCAs, resulting in decreased quality
of care because of lack of continuity and knowledge of the client.
Also, fewer PCAs very well could mean some consumers may not be able
to stay independent because of lack of personal care support.
It’s very important that the provider agencies have current
documentation from doctors, and streamlining the process through
a common form for doctors’ orders is a fabulous idea, but how
many of us often have drastic changes in our need for PCA support
(the kind that require new doctors’ orders)? The bigger problem
in this area is the backlog of nursing assessments for PCA hours.
I would like to see the Department of Human Services streamline the
assessment process rather than be concerned with doctors’ orders.
In no way am I saying doctors orders aren’t an absolute necessity
but I think there are more important issues to be concerned with.
I think everyone involved had very good intentions for increasing
safety and quality in the program and saving money by cutting out
fraud, but I am afraid that those will not be the only results. Stay
tuned, stay informed.
