So the New Year is just fifteen days old, but already I can tell that this year
will be different. That being said, I must write about a significant issue that
has consumed my life for the past six or seven hours. Today I was informed by
my personal care agency that one of my care workers could
not work due to certain issues. On the surface, this seems like
a non-issue, but it turned out to be quite a large one.
For
those that don't understand the aide care system, let me backtrack a little. I'm
not aware of whether I have mentioned that I live by myself in previous blogs.
I live in a small college town in the Northeast, which has a college that
caters to physically disabled individuals; however, college services are only
available if you live on campus. For the past three years, while completing my
graduate work, I have chosen not to live on campus. Along with that choice
comes several challenges that have nothing to do with academics.
In
the state I live in, there are three categories of options for those disabled
people who do not wish to live with their parents. One can either live in a
nursing home, a group home, or independently using what is known as an
independent living waver. Although I have chosen the third option,
the independent living wavers, let me briefly outline the other two options
before going into my choice.
There
are those outside the disabled community, and even those in the disabled
community that has preconceived notions about what the nursing home or group
home setting would be like. However, some of these perceptions are misinformed.
There are nursing home and group home environments that are very restrictive.
In the typical group home or nursing home environment, an individual pays rent
with their disability check or through a family member, trustee, or guardian.
The amount that the individual pays is used for various purposes, including
housing costs, daily meals, and aide care costs. In most situations, residents
are provided with three square meals a day cooked by the staff. They do not
have to worry about their care needs, not being met because there is always
staff available.
In some cases even, individuals are given a portion of their
SSI or SSD check back to spend as they wish. Critics of this system suggest
that the care quality is not always up to par. Often these facilities are
either understaffed, poorly funded, or a combination of both. While the
residents do not have to worry about their care needs being met, their care
needs are often completed to the bare minimum, and extras such as specific
grooming tasks may be neglected or done in a half-assed manner, if at all.
The
second option is a version of the group home/nursing home, which I like to
call the group house. Personal care agencies often run these, and they are
places where two or more individuals with disabilities or physical care need to
share a residence. It is not like a group home in the traditional sense in that
there are not 30 to 40 residents. Instead, these types of environments
typically house three to eight individuals. Three to five attendants usually
staff these facilities. These facilities provide the best of both worlds; in my
opinion, however, they are limited in that they have not yet become the norm.
Usually, people are forced to choose between a nursing home and the option I
chose.
I
chose to live on my own using the independence waver. The waver in and of
itself is a good idea, but it needs some serious retooling to be effective.
There are two categories on the independence waver; one can either be a
consumer who hires their aides, thus engaging in participant-directed care, or
one can use what is known as agency model directed care. I know I have long
explained the problem than usual, but I feel this is necessary to explain the
problem I had earlier. I have tried both participant-directed care and what I
thought was agency model directed care. I have found that in theory both of
these systems are good and well designed but the practice is much different
from theory.
As
a disabled man, I still cannot understand why a system designed in theory to
help make me independent in practice takes every shortcut to limit my
independence. Recently through no design of my own, care workers have either
been told they can't work for me or have chosen not to show up for mandatory
training activities. I had been with participant-directed care in the past, and
I purposely switched over to the agency to avoid this issue. Still, today I get
told that I am a consumer delegate, so it is not the agency's responsibility to
find me coverage in the case where they terminate a worker of mine. Granted,
they are doing their best to help me out, but I must say that I am angry at the
system on principle at the writing of this article.
If a company declares itself a personal care agency and you
go into a company with the impression that they will cover your gaps when
necessary, it should be the agency's responsibility to fulfill that
duty. I understand that I came into the current agency
that I'm with, with my aides from other companies. Still, I believe that once
those aides were forced to undergo training with the current company that I'm
with, that company should then assume responsibility for them. I will not throw
the current company I am with under the bus anymore except to say that yes,
they are within state laws to do what they are doing, but I think it is morally
appalling that such arguments have to occur.
The labels and terminologies used within the aide care
industry are set up not to benefit the service consumer but provide as many
loopholes as possible. The system designed to promote independence instead
creates much more stress and puts unnecessary burdens on individuals in need of
care. Rather than focusing on what they can contribute to the world, a large
portion of the disabled population has to spend a great deal of their time contemplating
whether or not they are going to have the necessary services. Throughout the
whole system, in general, not just in my situation, individuals are not willing
to take responsibility for their part in the process. Instead, they want to
pass the bucket so often that the disabled person gets discouraged and stops
making noise.
I'm well aware that this writing piece may ruffle feathers
in the disabled community at all levels. However, it is time for a change.
Disabled people should not have to be limited to three bad choices. The second
choice for living independently needs to be more widely available: the group
house setting that I spoke of earlier. Secondly, parents and
supporters of the disabled need to put aside their preconceived notions of
wishing that disability personal care was perfect. Perhaps if such group
setting such as nursing homes and group house settings were not stereotyped and
vilified, both of these systems could be improved. Finally, the state systems
need to be federalized when it comes to the independence waver. Usually, I am
not a big supporter of the massive federal government; however, state agencies
have no uniformity. A majority of agencies will find any loophole to put the
burdens on the consumer and not themselves. I understand that the personal care
industry is not the most desirable field, but if you were a company in charge
of your employees, you could not let them control everything. I understand that
the personal care aide is a vitally important person but giving them too much
control creates gaps in care and loopholes that need to be closed. Overall, for
a system that started as a good idea, the personal care system needs to be
looked at too closely, no matter what type of care one is discussing. Unique
care should be freeing, not limiting.
