Speaking Out!
As an advocate/guardian/family
member and direct support provider, I am in a unique position. I was seven years old when my aunt was
born. Tracy was a blessing to our
family. She taught my sisters and me to
be more accepting, and more loving. When
Tracy was diagnosed with cerebral palsy and profound mental retardation, the
doctors advised my grandparents to institutionalize her. That just was not in their plans. Tracy lived with my grandparents until they
both passed away; then she lived with my parents until her need exceeded their
abilities. She was 34 years old when she
moved into the Wyoming Life Resource Center (WLRC), a state institution for
those with developmental/intellectual disabilities and with acquired brain
injuries. Prior to moving to WLRC, Tracy
received services at home under the adult Medicaid waiver. Tracy was one of the first in our state to be
placed on the adult waiver. She went to
the local community program for day habilitation services as well as case
management.
Having experienced Home and
Community Based Services then services from the state institution, I see a
bigger picture than some. I see the need
for client centered care and that what works for one person will not work for
another. There is a definite need for
persons to receive support and services that are appropriate to their unique
situation. I cannot fathom how so-called
advocates ignore the need for client centered care and insist on making blanket
policies which ignore individuals’ uniqueness. I strongly believe it is more important to
create policies which create client centered care, oversight, and more
stringent training standards. We need to
hold community programs to higher standards and enforce those standards – not just
look the other way.
Our community is rural and
small. There are fewer than seven
thousand people living here. I can’t
really say how many people are served in our community program; or how many
people are employed by it. I can’t say
whether or not other community programs in our state are managed like the one
where I work. What I can say is, in my
opinion, our community program is not equipped to serve the profoundly
disabled; nor is it equipped to offer the same services residents of WLRC
receive. An argument in favor of closing
WLRC has been, and continues to be, that the community programs offer the same
care and services that WLRC does for a markedly lower cost. It simply is not true. WLRC offers client centered, integrated care;
physical therapy, behavioral therapy, equine therapy, aquatic therapy, and
medical and dental services are provided on campus. In our community program, services are
provided by doctors etc. in the community; many of whom do not have experience
treating someone with developmental disabilities. Another argument has been
that participants in community programs are more integrated into their
communities than those in institutions.
Because our community program does not provide the necessary equipment
and suffers from staff shortages, people with mobility issues are rarely taken
out into the community. They spend their
days in adult day services then go back to their group homes. Adult Day
Service, (formerly Day Habilitation), is limited in opportunities to integrate
participants into the community; weather is only part of the challenge.
The biggest flaw in the community
program where I work is a lack of oversight.
Certainly, the state and CARF come to do their inspections. But there are issues not being reported to
the state or CMS because people are afraid of losing their jobs. In a small community where jobs are hard to
come by, it is difficult to put yourself at risk of becoming unemployed; even
when you witness exploitation, abuse, neglect, fraud. Staff shortages, combined with a non-existent
employee pool, create an environment in which managers cannot or do not take
disciplinary action against employees who ignore Individual Plans of Care
(IPCs), make medication errors, take money or belongings from participants, or
any other infraction; even when more than one other person reports it to their
supervisor. In addition, communication
with guardians, case managers, the state Department of Health, and the board of directors is discouraged or restricted.
Another problem is a lack of
training. Although the state believes
their training videos, which focus primarily on clients’ rights, are
sufficient, direct support professionals are not trained in many areas. For example, there is no training on dental
hygiene, how to use the wheel chair lift on a bus, or how to administer a
suppository. The team meetings,
mini-training sessions every other week, are repetitive and stagnant; not even
a genuine opportunity for continued education.
When it is time to train on an individual’s IPC, a cheat sheet is
provided and DSPs are asked to simply sign off on the training; without
discussion or training.
As an employee, I am
concerned. I am concerned about the
welfare of the people I serve. As a
guardian, I am appalled and would not even consider recommending this program
to another guardian. As an advocate, I feel the need to speak out. As an individual, I have wondered if my silence
is really worth the $8.50 an hour I make. I have lost sleep. I have struggled with my conscious.
My conscious won out. I cannot call myself an advocate if I am not
advocating; if I’m not being their voice.
That’s why I decided to write this entry. That’s why I have decided to take
my concerns straight to the Department of Health; even if it costs me my job. That’s also why I can sleep tonight. If necessary, I’ll worry about how I’ll pay
my bills later.