HELPING HANDS

The series

The word independent is a significant word to someone with cerebral palsy. The slogan of the community is “Life Without Limits.” This motto for a person with cerebral palsy and their loved ones becomes the ultimate goal, which is independence in our lives. There are four main classifications of cerebral palsy:

• Spastic: 70-80% of the community is in the category with this
• Dyskinetic: 10-20% of the community are in this type
• Ataxic: 5-10% of the community have this style
• Non-CP: about 5%, which means you have cerebral palsy, but someone can hardly see it 

If you are lucky enough (or not), you can have a mixture of two or all three. As for me, I’m mobile with the help of my walker, and am Spactic, Dyskinetic. As much as I can be independent and live life without limits, just like anyone, I 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. Every person–with or without a disability–needs a hand in some way; it’s just about what kind of help a person needs to be independent. It should be “sky’s the limit” or “don’t underestimate us” because we want people to see us for who we are, not by our appearance.

When you have cerebral palsy, there are all kinds of levels of independence. You can have the autonomy of someone who doesn’t need help, then the type of cerebral palsy where you can be independent with minimal support. Lastly, there is the type of cerebral palsy that makes us entirely dependent on other people for help. The type of cerebral palsy that I have means that I can live independently with minimal help. When it comes to applying for this kind of support, it can 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 otherwise fully independent. Having to ask for help to live independently makes you feel like you can’t be independent or competent to live like other adults. 

Generally, people with a physical or mental disability or seniors who need help with specific everyday tasks use Personal Care Assistants (PCA) services. I knew I had to get 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 on my own right in the middle of the pandemic, I wasn’t sure how that would go; I had to trust that the people who helped me would be a good fit during this time). As much as my parents loved and supported me and did anything for me, they still helped me more than they should have.

After the vaccines became available, I started thinking about getting someone to help by spring. I wasn’t sure how to proceed, but luckily, United Cerebral Palsy had just started a new program and hired an inclusion advocate. The inclusion advocate helps the clients of United Cerebral Palsy live entirely independent lives in the community.

Along with my inclusion advocate, I started working on things to help me be more independent, such as applying for SNAP (food stamps) and looking for and applying to a program that would best fit me for a PCA. Applying for SNAP was a snap (LOL)  (SNAP). Using a PCA took a little more because it involved some research. What kind of help would I need? I had already spent almost a year on my own. 

For me, the central help I need is with heavy cleaning and going food shopping. I’m okay with ensuring the dishes are clean and the daily stuff is organized, but when it comes to heavy cleaning, such as washing clothes, sweeping, mopping, and making my bed, things can get tricky because of my balance. 

The ultimate goal was to make myself independent in the best and safest way possible. Community First Choice was the one that best suited my needs (Community First Choice – CT.gov). The application process was pretty straightforward. This program is excellent because it works on the PCA waiver (Personal Care Assistance | Connecticut)

When the CFC person interviewed me, she was impressed with my independence but 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 I have CP,, but I also 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 debilitate me, let alone allow me to 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 reply that I had been approved for 28 hours a week. The CFC program runs through my insurance, so unless I go over the 28 hours–at which point I would have to pay them out of pocket–all this help is paid for. 

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 of these things don’t apply to me; I can hire anyone. It would be nice to fill the 28 hours with one person. It would be great, but that would be hard for one person. I have two PCAs, my sister-in-law, and a childhood friend.  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 the challenges of life. Still, there are programs to help people with disabilities be independent with a few good helping hands.