Thursday, September 27, 2012


Caregivers are a fact of life for me.  I couldn't do anything without them.  They allow me to live in my own home and lead a productive life.  Had it not been for caregivers my mom  would not have been able to die at home.  For me to say negative things about caregivers and home care agencies would not be productive.  I appreciate all my caregivers and what they do for me and Lucie.  That being said,  I do think there are ways home care could be improved.

There are probably a myriad of reasons why people choose to work in home care. I  have been told that the reason people work in home care is because of the flexibility of schedules.  If a caregiver  needs to take off, it is easy for them to do so. The agency will work around a caregivers schedule.  Rarely,when I ask caregivers, do they say it's because they want to help people. It has been my experience, sometimes, that caregivers are more concerned with money than clients.  I understand, especially in this economy, that everyone needs money, but as a client, I like to think that my caregivers care about me and I'm more than just a job to them.  I know money is important, but so is compassion.

Caregivers should be given detailed background on their client.  I cannot begin to count the number of times caregivers have come to work for me stating they have had no experience working with someone who uses a power chair and has Cerebral Palsy.Or they were told I used a wheelchair, but weren't told that I couldn't transfer myself.  The more information given,  the easier it is for the caregiver to do their job.  

It would also be ideal if caregivers and clients could meet before a caregiver begins working for a client so that they could become acquainted with each other.  If you have more than one caregiver, as I do, or if it's an emergency situation, that's not possible.
Agencies should allow clients to evaluate caregivers.  This would let the agency know how the caregiver is doing and if the caregiver is a good match for the client they are working with. Also, agencies need to monitor a client and caregiver by sending someone out to a client's home from time to time so they can see conditions in a client's home and see if things are running smoothly to avoid any problems. I know this is done sometimes for clients on Medicaid, but to my knowledge, it is not done for private duty clients.

Caregivers are often overworked and underpaid. It's my responsibility as a client to let my caregivers know how much I appreciate what they do for me.  It's the caregivers resposibility to help their client as much as they can.  There should always be a mutual respect between clients and caregivers. if they have respect for one another, then both the client and caregiver will have a positive experience.


Wednesday, September 19, 2012


I''ll never forget the first time I realized I was thought of as "severely disabled." My mom and I had gone to a vocational rehabilitation office to inquire about getting assistance in purchasing an accessible van.. The counselor had not come in yet. I saw a file on the desk with my name on it. The words "severely disabled " were written on it. I freaked out. I remember saying, "Mom, that's not what I am is it?" "No, that's just something they put down. It doesn't mean anything," my mom said. But I knew it did. It meant that society would always view me as different and make assumptions and judgments about what I'm capable of. It meant that I'd spend my life having to prove myself to others.

I was born with Spastic Cerebral Palsy. I knew that meant that a part of my brain had not properly developed and that my muscles are tight making it difficult for me to move my arms and legs. And, that because I had not attained standing balance as a child, I used a power wheelchair. I knew all the facts, but until that day, in the vocational rehabilitation office,, I never knew I was severely disabled. I remember thinking,"Okay, my limbs don't work properly and I use a wheelchair, but on the inside I am just like everyone else. Why can't people see that?"

Many people with Cerebral Palsy are mentally challenged as well. I'm blessed with a good mind. There have been times when people see me in my wheelchair with my caregiver and speak to my caregiver rather than speaking to me directly. They act like they don't even see me. This happened, most recently, at a hair salon and nail salon. The stylist was doing my hair and telling my caregiver what she was doing to get the style I had requested. More than once I had to ask her to please speak to me directly. Somehow our conversation got around to the children's book I'd written. The stylist looked over at my caregiver and asked, "She writes?" My caregiver nodded and said, "Yes." Things have improved at the nail salon, but when I first visited, the employees looked at me as though I was an alien from another planet. They asked my caregiver how my nails should be done. My caregiver replied, "She can tell you."

It doesn't happen as much anymore but when I was younger, quite often, I wasn't given a menu at restaurants. The assumption being that because I was in a wheelchair I wasn't able to read. This would infuriate me and I would (sometimes very loudly) ask for my own menu.

When I have book readings for my children's book I do a little lesson on disability awareness as well. I tell children that we are all unique and special people. When they see someone who looks a little different because they use a wheelchair, walker or cane, don't point or stare. Go up to them. If you have question, ask. You'll find you are a lot more alike than you are different. And, you just might make a new friend.

Children are much more accepting than adults. Adults have more difficulty accepting someone who is different. I'm asking anyone who reads this post to remember this. The next time you meet someone with a disability don't make judgements or assumptions based on outward appearances. Look past what's on the outside and try to see them for the person they are inside. Who knows, you just might make a new friend.