Tuesday, February 17, 2015

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.