The word independent is a significant word to some with cerebral palsy. The slogan of the community is “Life Without Limits.” The word and the slogan for a person with cerebral palsy and their loved ones becomes the ultimate goal is to have some kind of independence in our lives. There are four main classifications of cerebral palsy, they are:
- Spastic 70-80% of the community are in the category with this
- Dyskinetic 10-20% of the community are in type with this
- Ataxic 5-10% of the community are in style with this
- None-cp, about 5%, which means you have cerebral palsy, but someone can hardly see it
If you are lucky enough (not), you can have a mixture of two or all three. As for me, I’m walking (using a walker) Spactic, Dyskinetic. As much as I can be independent and live life without limits, just like anyone, you have limitations ( so part of me doesn’t quite believe in the “life without limits.” It just feels misleading to me) in a way you do need help in life. No one person with a disability or without a disability, we all need a hand in some way in life; it’s just about what kind of help a person needs to be independent. It should be “skies the limit” or “don’t underestimate us” because I like people when they meet us, their go by appearances and not the person.
When you have cerebral palsy, there are all kinds of levels of independence. You can have the independence of someone who doesn’t need help, then the type of cerebral palsy you can be independent with minimal support. Lastly, there is the type of cerebral palsy that is entirely dependent on people. The type of cerebral palsy is that I can live independently with minimal help. When it came to applying for this kind of support, it was going to be tricky. I have always been caught between a rock and a hard place because I have cerebral palsy, and I need assistance with being fully independent as a person with cerebral palsy. Hearing you need help in life makes you feel like you can’t be independent or you can’t be competent to live on your own.
Generally, people with a physical or mental disability or older adults who need help with specific everyday tasks use Personal Care Assistants (PCA) ‘s services. I knew I had to get someone like a PCA to help me ( A Personal Care Assistant / Aide is trained to provide a wide range of services to individuals in their own homes. Still, because I moved out right in the middle of the pandemic, I wasn’t sure how that would be; having people that I didn’t know come in and help me, that I didn’t know would be the best during this time.) As much as my parents love and support me and do anything for me, they still were helping more than they should have.
There was a vaccine for what was going around, so I started thinking about getting someone to help by the time spring came around. I wasn’t sure how to go about the process, but luckily the United Cerebral Palsy I had just started a new program. They had hired an inclusion advocate. The inclusion advocate helps the clients of United Cerebral Palsy live the best, fully independent lives out in the community.
Along with my inclusion advocate, we started to work on things to help me be more independent by applying for SNAP (food stamps) and looking and applying to a program that would fit me best for a home assistant. Applying for SNAP was a snap (LOL) (SNAP). When it came to applying for a PCA, this took a little more because it took a bit of research. What kind of help would I need? I had already spent a year on my own just about.
For me, the heavy cleaning and going food shopping is the central help I need. The everyday cleaning I’m ok with makes sure the dishes are clean and the daily stuff organized, but when it comes to doing the heavy cleaning such as washing clothes, sweeping, mopping, and making my bed. These can get tricky because of my balance.
The ultimate goal was to make myself independent in the best and safest way I could. Community first choice was the one that seemed like best suited my needs (Community First Choice – CT.gov). The application process was pretty straightforward. This program is excellent because The program works on the PCA waiver (Personal Care Assistance | Connecticut)
When the CFC person interviewed me, she was impressed with how independent I was, but she could see how fatigued I could become. A big part of cerebral palsy is becoming quickly fatigued. Every person with cerebral palsy has a level of fatigue; mine can be very severe at times because not only do, but I have psoriatic arthritis ( in remission) ( Psoriasis – Symptoms and causes – Mayo Clinic). I also have what is known as (Costochondritis – Symptoms and causes – Mayo Clinic.) When one of these health conditions acts up, it can support me, let alone keep up with daily activities. At these times, I am grateful for the help that I have.
It took about a month for CFC to get back to me to say I got approved. CFC had approved for 28 hours a week; this shocked me. The CFC program runs my insurance, so unless I go over the 28 hours, I would have to pay them out of pocket; all this help is paid.
The best part of the CFC program is because they work on the PCA waiver program, I get to pick who I want to help me. There are only two requirements; I can’t be married to the person or be dependent on them. See that either these things don’t apply to me, I’m able to hire anyone. It would be nice if I could fill the 28 hours by one person. It would be great, but that would be hard for one person. For right now, I have two PCAs, my sister-in-law and a childhood friend. I think it would be nice to add one more but in time.
Going through the process of becoming an independent person with a disability ( from looking for a place to live to becoming an independent person with some help) has opened my eyes to see that life is challenging. Still, there are programs to help people with disabilities be independent with a few good helping hands.
To be continued…