Peer Mentor Blog Post: Consumer Directed Personal Assistance and Traditional Home Care
Consumer Directed Personal Assistance and Traditional Home Care
By Iffat Khan
I am very grateful that the Consumer Directed Personal Assistance program (CDPAP) is in existence. If I did not have the CDPAP as part of my life I’m not sure where I would be today. With CDPAP, I am able to live my life without having to adhere to strict schedules and I have the ability LIVE my life the way I want with the support of my Personal Assistants (PA). For people who are just considering CDPA as an option, peer mentoring can be a valuable resource.
Prior to the CDPAP, I was only aware of the availability of traditional home care services. When I was enrolled in traditional home care services, I was dealing with uncertainty on a daily basis. It felt as though I was not in control of my life. There were times when I had no one to assist me with my daily routine. I did not have consistency and/or the support of the home care agency. For example, when the permanent home health aide (HHA) was out or unavailable for a time, the supervisor on the case did not provide an alternate HHA.
This situation was of particular concern during holiday time and the winter months. During those times, I was left alone and in a distressed state. These were times when the only people that I could rely on were my husband or a neighbor. This was not always reliable because my husband worked during the day and was not available to assist me. In an emergency, if I was fortunate, I was able to ask my neighbor for assistance, however she was also not always available.
When replacements for the HHA’s were available, it was as if my home were a merry-go-round. When the “ride” stopped, I may or may not have had a person to assist. There were times when the substitutes where not capable of doing the work or not properly trained. They would not be pleased with the amount of work that needed to be done. When I would address a distressing situation with the home care agency it took forever to get a resolution.
Many times when issues would arise, I would discuss my frustration with my Care Manager at the Managed Care Organization. She would often suggest the option of enrolling in CDPA. When I was told about the CDPA program and what it entailed, I was very intimidated for some time.
What initially prevented me from enrolling in CDPA was the responsibility for recruiting, hiring, training, supervising and, if the need arose terminating, the people who worked for me. When I was first enrolled in CDPA, I was extremely overwhelmed with the idea of this responsibility being placed on my shoulders.
I thought, “Actually being in charge of my own care? What a concept?” People without disabilities have done this forever; however, the idea of this concept was so daunting. How was I supposed to do this? I thought there was no way I could manage it.
Once I started in CDPA there was a real difference that I noticed almost immediately. The CDPA program helped me to see that consistency was possible and that there were reliable caring, capable people who understood my needs. CDPA helped me to realize that I was capable of handling the responsibility of my own care.
In spite of my apprehension about how to take responsibility for my own care, it was actually the best choice for me. Through the program, I have relied on my experiences with traditional home care and knew what didn’t work back then. With CDPA, I am in charge of my life and my daily routine. Who else other than myself, knows what’s right for me? If you really think about it, it is actually amazing that New York State has understood the importance of being independent and having the ability to direct one’s own care. I appreciate that I am able to take care of myself just like people without disabilities.
Now, working for Consumer Directed Personal Assistance Association of New York State (CDPAANYS) as a peer mentor, I have the opportunity to assist other consumers by giving them the support they need through listening and empathizing with them about their situation and helping them find solutions that will work for their programs I am able to understand their apprehension since I have had similar experiences.
I know that if the peer mentoring program was available for me when I was considering CDPA as an option and started my program, I would have appreciated the fact that someone really does understand what I am going through. To be given the opportunity to talk to someone who knows what you are feeling and has actually gone through the same can help someone realize “If they can do it, then why can’t I do it too?”
For me the difference between traditional home care and CDPA is that I feel a sense of empowerment. The word “INDEPENDENCE” has a brand new meaning for me.
Over time, as a consumer of the CDPAP, I have noticed that I am my best advocate. I have learned how to make my voice heard with the support of my CDPA Personal Assistants. I am appreciative that I have the freedom to be responsible for my own care. I am thankful for and greatly appreciate the consistency I have in my life through the Consumer Directed Personal Assistance program.