Marjorie came to live with us the day after my birthday, March 9, 2011. This time, I cleaned out the room that was my office and set up an office in the basement. We had installed a garden window in the room that was her bedroom when she lived with us two years prior, which made it unsuitable for a bedroom. I worked hard on my birthday moving furniture, books, and files, etc. all day long.

Marjorie seemed exhausted but happy to be at our house. She said there was always noise at John’s house and John’s wife was unbearable. She said John’s wife had argued with her and pushed her. I gave John a DVD about elder abuse and asked him to share it with his wife.

Marjorie slept a lot those first few days after moving in with us, so much so that I became concerned for her health. She said she was fine, but because of her history I did not believe her. John said she had been to the doctor’s regularly and had a clean bill of health, but I did not trust his word either. He did not give me any instructions about her medications or about how to care for her stump.

The first thing I wanted to do was to have her examined by a doctor who was familiar with elderly people. I called the Best Friends Center and asked for a referral to a physician. I was given a doctor’s name, and when I called, they told me she was not accepting new patients, but that there was another doctor in the same office that would see her. So I made an appointment. She also needed to see a dentist (one of her teeth fell out the first week with us) and a podiatrist (her toenails looked awful) and a doctor who specialized in prosthetics. Her gait was uneven because one leg was shorter than the other.

I did not want to leave Marjorie alone for any length of time, and because I was working on getting the Certificate of Need for the adult day center, I knew I would not always be able to be home. I also was applying to be a substitute teacher because we needed income in addition to my husband’s low teaching salary to be able to pay our expenses. Best Friends had the most pleasant environment for daytime supervision for older folks with dementia, so I applied for Marjorie to attend there. They are not a medically licensed facility, however, and did not have a medically trained person on staff. For Marjorie’s needs, it was not ideal. Also, they did not have much availability. An afternoon here, a full day there. I wanted full time.

Marjorie had an income of $2,000 per month. To pay for her to attend the center, her medical costs and her living expenses would take more than that.

I enrolled Marjorie in ITN of the Bluegrass’s transportation services so I could save transportation time. When I took Marjorie for an afternoon at Best Friends it seemed as if I had to turn around and pick her up too soon after dropping her off. I had to walk in each time I dropped her off and picked her up and that took more time.

Because of the costs, the burden of care on my time, and the lack of services in the community, I decided to explore the Medicaid Home and Community Based Services Program.

I called to make an appointment. It took a long time and many reconnections to finally speak with the person with whom I needed to speak. The appointment was two weeks away.

At the appointment, I was given some informational material, and I was told to gather a plethora of documentation. Tax returns, social security and retirement income documents, Medicare and Medicare Supplement Insurance documents, proof of purchase of burial and funeral arrangement documents (you must buy an irrevocable funeral policy or it will count against you) an accounting of all expenses and purchases for the last several years, bank statements, proof of the sale of their home and car, and medical records.

The gathering of the material took about two months of almost full time work. While awaiting word of whether or not Marjorie would be eligible for Medicaid, I was trained on how the Consumer Driven Option (CDO) worked. I was told that after we were certified eligible for Medicaid, we would be reimbursed for the wages we paid a caregiver. For this piece of the puzzle I dealt with the Bluegrass Area on Aging staff. I had to supply them with more documents. Then I was told I would receive a visit from a person who would interview Marjorie and me and then she would explain how the program worked.

The program was so complicated that I was “trained” by two different staff members at two different times. I can’t remember who said what and when, but in essence, I had to become a “boss” to a caregiver or caregivers that I would hire. I was not allowed to use a caregiver from an agency, and the program would only pay $10.00 an hour. How to find such a person? No help there from the CDO program. I was on my own. Through my networking efforts I was referred to a potential caregiver, and when I called her she said she was on unemployment, and $10.00 an hour was less than she was getting on unemployment. Unemployment compensation should be reworked so it does not disincentivize people to work, but I could relate. After going through a full day of unpaid orientation to be a substitute teacher in Scott Co., I found out they were only going to pay me $10.00 an hour too, so I gave up that idea. I would have to pay a caregiver that amount to be with Marjorie while I worked, so I would be foolish to work for nothing.

After more of my time was spent finding and hiring a caregiver, it was up to me to train her and obtain the necessary background checks and tax paperwork, etc. in order for her to begin to be paid by the program.

Another component of the CDO program was that the home caregiver (the uncompensated representative) and the paid caregiver had to fill out time keeping paperwork together and submit the paperwork on time in and in good order for the paid caregiver to be paid by the CDO program. Please see http://chfs.ky.gov/NR/rdonlyres/7B3FF2BD-A085-4E18-8A6E-A3D8161A7091/0/CDOParticipantHandbook200909.pdf for details. Please scroll to the very end. There are 83 pages.

One of the most difficult parts was the submission of the documentation for the paid caregiver’s amount of hours worked. It had to be hand delivered to a physical box at the CDO office by a certain day and time, as I recall. That may be different now, almost three years later. I don’t know.

Aside from all that, I had much more serious objections to the program after I hired a caregiver and began experiencing a paid caregiver in my home.

I had used an agency caregiver prior to using the CDO program. The first couple of caregivers they sent me did not stay long, and a couple were scheduled to come and did not show up. But finally they sent one that was good and that Marjorie seemed to like. She could even get Marjorie to take a shower and go on outings. But then she had a health event and was out for a couple of weeks, and Marjorie did not like the substitute as well. Paying the agency caregivers was expensive though, and I was not making much money as an insurance representative part time, so I continued to explore Medicaid and the CDO program.

I liked the agency because if we didn’t like a caregiver, we could call for another. And if something happened to the caregiver (such as the caregiver not showing up), I knew I could call the agency and they would send another caregiver. Not so with the CDO caregiver. I was on my own to hire a back up person, but there were no guarantees that person would be available, either. Also, if the caregiver did something they were not supposed to do or vice versa, I could call the agency and complain and they would take care of the problem. Not so with the CDO program. It was just me and the person I hired. It was up to us to work out any problems.

The agency caregivers were bonded, in other words, if they stole from us, we would be compensated by their insurance coverage. Not so with the CDO program.

I did not feel comfortable with the CDO person in my home. It turned my home into a place of work. I did not fully trust the CDO person, because I did not know her well. I advise anyone who has a paid caregiver in their home to install security cameras everywhere. It will relieve the anxiety of not knowing.

As it turned out, we were certified by Medicaid to be eligible to be reimbursed for the wages we paid the CDO caregiver the week after Marjorie was picked up by her other son John. She originally was going for a visit but they decided she would stay there permanently. We were never reimbursed by Medicaid. She had lived with us for a year and three weeks.

Next week: The Certificate of Need Program in Kentucky.