In Illinois, there are two programs for disabled persons to provide them with help at home. One is DORS, and it’s for those under age 60. DORS is administered through the Illinois Department of Human Services and provides services to individuals with disabilities so they can remain in their own homes and live as independently as possible. DORS, personal assistants are selected, employed, and supervised by individual customers. That means the personal assistant (PA) gets to meet the client and see the premises before they agree to take the job and/or before the client agrees to hire them.
For those age 60 and over, there is the Community Care Program which is administered through the Illinois Department on Aging. Under the Community Care Program, home healthcare agencies (HHA) apply with the state government for approval. The agencies then hire “home makers” which for all intents and purposes perform the same work as personal assistants under the DORS program.
HHA’s train by having applicants watch 16 hours of videos. The agency I am assigned to includes in their recruitment material, “No previous experience required”. That speaks volumes, clearly indicating that clients, many of whom are in pain or feel lousy and need assistance, are expected to provide on-the-job training.
Before age 60, they seem to think that disabled persons are capable of interviewing and orientating persons who are going to be in their homes. The attitude I have experienced from HHA agencies and various personnel with the Illinois Department on Aging, is that once people live to see their 60th birthday, they are stereotyped as elderly patients whose minds have stopped functioning and who can be disregarded as long as they are patronized.
From March 19th through May 30th, I’ve had 3 or more hours each day, Monday through Friday, consumed by homemakers and/or the agency that assigned them. It turned out to be the most stressful and inconvenient thing I’ve ever experienced. Geez! Homemakers were expected to make my life easier. I should be enjoying evenings and weekends instead of being exhausted and at times, traumatized.
My experience with the Community Care Program lasted less than 3 months but seemed like a year and thus, the reason this post is longer than most posts that I write.
From time to time, I receive surveys after making a customer service call. The journey into kicking breast cancer opened up another area where I receive numerous surveys from hospitals and other service providers.
I’ve now decided to toss all surveys when I receive them. The following is why.
First, I have to thank someone who once called me almost daily with questions. Her questions never ended without first giving me numerous, multiple choice answers. At times, I lost count of the number of choices and by the time she placed a period or question mark, I no longer remembered her question. Her questions were not based on my reality, experience, nor knowledge.
That experience woke me up to the surveys I receive from businesses and organizations. Most will include a three line block at the end to write comments, but they do not provide where the comment(s) apply to one or more of their questions. That gives me the impression that whatever is chosen as an answer to the questions is what goes on record, without comment.
It surprised me when I received a survey from the hospital several days after my discharge. I had been admitted for four days. I was admitted after taken to the ER by ambulance. For 2 days I called the Cancer Center twice to report having a urinary tract infection. My then oncologist did not prescribe an anti-biotic and going into the fourth day of having declining white blood cells and excruciating pain, I ended up having a seizure. Add dehydration, (because he told me to take Benadryl) low blood pressure and allergic reaction to a chemo drug that I practically begged him not to give me, and you can understand how my attitude turned to being distrustful.
Did the survey include a question as to whether I believe my hospitalization was avoidable due to the decisions of my physician? Nope. Read the rest of this entry