In “ A FEW HELPING HANDS PT ONE” (A FEW GOOD HANDS PT1), I shared my journey to applying for a PCA (personal care assistance). When picking a PCA, you first need to sit down with yourself and list what you wants and needs. You don’t want to give up the independence you fought so hard for. You want to work together as a team by having two sets of hands, legs, and eyes. You want your PCA to help with the extra challenge while still keeping up with the things you can do independently. Whether you have a PCA for five hours a week or a hundred hours a week, any help gives you more energy to store in your energy bank. A person with cp can use up to 3-5 times more energy just to do the most simple task such as getting out of bed, going to bed at night, and everything in between.

When people hire their PCA, they will have different requirements. In my previous blog, I stated that I live in a state with the PCA waver. Under the PCA waiver, your home is a business; you’re in charge of hiring and firing. I’m also in charge of keeping track of all the hours. When I haven’t met my hours for the week in the program, the leftover hours go to the following week. If there are hours left at the end of the year, I lose them and start all over. Keeping track of the hours is a weak area of mine, and I need to improve. I never thought I would have a significant role such as this in life. It can be stressful to have this kind of responsibility in life, but I enjoy and feel good about this.

As I keep enforcing in all my blogs, every person with cp has different needs; they also use energy levels in different ways and at different speeds. Suppose you think of a car gas tank. Different cars use gas differently, like people with cp using their energy. Some people with cp can use their energy faster than others. When putting together your team, you want to pick people who can meet your needs. Some people choose one person to feel comfortable. However, I need more of a person to work alongside me, while others might need to have them help with more unique needs. If I need someone like this, I can understand why those people want to keep to one or two PCA. I know that I might need more help from a PCA at some point in life, but I need more of a companion for now. A companion/PCA is a little different than just a PCA. 

When my companion/PCA is with me, they’re there to help me increase my independence instead of taking my independence away. If you are a physically disabled person or know a physically disabled person, you know the word “INDEPENDENCE” means everything. Having to bring someone into my private life to help that isn’t my family made me feel vulnerable but knowing that I’m under the PCA wavier helped a little. ( The Personal Care Assistance (PCA) Medicaid Waiver, administered by the Department of Social Services, pays for the costs of a personal care attendant to assist individuals between ages 18 and 64 with a physical disability with their Activities of Daily Living. “ADLs”).  

(Personal Care Assistance (PCA) Waiver | MyPlaceCT)\

As time goes by, I’m sure I will need more help. For now, the needs that I’m meeting are the ADL.  As you age with cp medically is not indeed known what cp will do to a person—every person with cerebral palsy experiences pain and aging differently. One of the reasons that might be because people with cp to age earlier is that we use 3-5 times more energy then others. Another reasons I believe that just because we have cp doesn’t negate us from getting other health issus from just being human such as inherited health issues. It would be nice to just say all you have in life is just cp but life doen’t work like that.

Now that I have explained how having PCA has improved my independence and also has given me more independence. Here are seven things I look for in a PCA, and these are my requirements for another person who might be looking for something different depening their needs.

 The first requirement I look for in a PCA is to defy the word “TEAM,” when spelling the word “TEAM,” you want neither you nor the PCA to misspell it by putting an “I” in “TEAM.”  Years ago, I took a group dynamics class; On the first day, the teacher came in saying, “THERE IS NO I IN TEAM.” When he came in and said this, it stuck with me, and I have taken this to be one of my mottos in life. This requirement is essential because I know I have to rely on people for help, but that doesn’t mean you have to let the PCA take over and just sit there and shout orders. That isn’t what a PCA is for; I believe if you and your PCA spell “TEAM” the right way, you will only increase your independence.

 When having a PCA, it’s an intimate relationship; it can feel awkward or embarrassing to have someone helping you with your physical and emotional parts of life; THIS WAS A BIG CONCERN before I even applied and knew about the PCA waiver. Having someone, I didn’t know coming into my space and helping with the intimate things of my life and not having a relationship. Once they explained the PCA, I felt more comfortable having someone come into my space to help me. I would tell people just keep in mind the intimacy side of having a PCA; for some people, that can be awkward on each side: for you and the PCA.

After reading the manual about hiring a PCA, one of the things is how not to get too personal with each other. It can be very hard not to share your life. You and your PCA become like your own family because you spend so much time together. You share things that you might not share with others; this is a gray line because, in some cases, the PCA can be the only person you have in your life that you see regularly and the only one you can trust. When you have such an intimate relationship, it can be hard not to share each other’s life stories, or why you or the PCA are having a hard time; on the other hand, you may get a PCA that only does the PCA work for a living, so they know how to separate themself from that kind of relationship.

Emotion/physical intimacy is one level of a PCA;  client relationship.  My number two requirement of a PCA relationship is that when you are interviewing them get to know each other on a level where you feel safe. It can be tricky for people with disabilities to have an emotionally intimate connection with someone. They may not have a stable home life or previous PCA that had emotionally or physically abused them in the past, and it might be hard for them to warm up even getting close to a PCA. Make sure the person you are interviewing knows how you have been treated in the past by others. Remember that you are the boss, and you are the only one who knows your comfort level. On the other hand, you also must respect the PCA’s comfort level. They might not feel comfortable doing a specific task.

My number three requirement is to work off both our (PCA and mine) strengths and weaknesses. Remember working with your PCA is teamwork. You need to work with the PCA to help you gain independence, but at the same time, your PCA may have never worked with your disability before, so you might have to teach them about your disability. One of the things you want to explain to your PCA is how you would like to be treated in public, they are there for you, but at the same time, you don’t want to make that visible for the whole world to see. I asked my PCA to please treat me like we are friends when out for the day with you. Always ask if I need help and never assume I do. It might take you and your PCA a while to adjust to this requirement, but this situation will be a learning experience for everyone.

As I said, I’m lucky enough to have PCAs that have been my friends all my life, but even then, on many levels, they don’t know or understand what my day was like as a person with a disability. When they were just friends, that is what we were, they knew and understood I had cp, but we would never honestly talk about how my cp affected me on personal leave. They saw the strength I would have on an outward everyday basis, but they never saw the inner private struggle that a person with a disability has. It takes a particular person to understand that; on the other hand, the closest person to you may never understand what kind of strength it takes for someone with a physical disability such as cp  to be able to live life on a daily bases.

My number four requirement is trust/companionship. These two things will take time no matter if you know the person or not. The bottom line that when it comes to any relationship trust/companionship doesn’t come easily to anyone. Like I said before, the person your working with could have been emotionally/phycally abused by other PCA, or it can be their first time with a PCA because its their first time their own (like me). Just like in any relationship, this step will time. 

My number five requirement is respect. The PCA needs to respect you, and it is critical for you as the employer to respect your PCA. There will be a time when you might have to talk to them like a boss but always do it respectfully. Also, appreciate the PCA andnot put too many demands on them. Yes, their you, but at the same time, treat them; with respect

My number six requirement is that when we are out in public, unless I say something, don’t make it known that they are my PCA unless I feel comfortable with where we are and whom we are talking to—I would like the PCA to understand how to make small talk out in public. After living on my own a whole year before I got a PCA, I got into a routine of walking around my area, sitting in a coffee shop, and making small talk with people I met at around and  continue doing this while having a PCA with me. Most of the people I talk with know my story, so I am comfortable. Having a PCA is not only for helping with my daily living skills but also for companionship. The companionship will take time no who your PCA is because companionship will be based on respect and trust.

My number seven and finally, the requirement will just be to have fun and be comfort with each other because, in the end, you become family. There will be, times that both of you have a terrible day with each other, but that is to be expected when you have a relationship such as a PCA and a client relationship.

Published by sixlegstoindependentlifefromawalker

Hi I'm Marie W.O.W.O.C.P ( Work Out With Cerebral Palsy) Just an average person living with six legs. Two on me and four on my walker. I live a full independent life with cerebral palsy. These are life stories and events about how I overcame everyday life with cerebral palsy. I hope by sharing my life story and lessons I have learned I can help others in the world to show them that disability is only a word. Just because our body may not be capable of everything we want to do but with a positive outlook on life we can still get where we want and need to be.

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