Birth of a Disability Activist

It must've been five years ago that I first had the thought that maybe I should work to change the health care system. It is so obviously broken. On the other hand, that seemed like an entirely self-serving activity. Poverty seemed like a more far-reaching and important issue. I did some volunteer work for Habitat for Humanity and felt like I was making a contribution.

Since this latest increase in my disability, I have called a local agency that serves people with disabilities. I explained my situation and asked them what they could do for me. They suggested Meals on Wheels. I visited my neurologist and asked him for a referral to a physical therapist. (Each day I feel myself getting more and more clenched up and spastic.) The doctor talked about a change in medication(more about that in a later post) and gave me a referral to a rehab doctor.

Time passed. Spasticity increased.

My husband, Ralph, discovered that, according to our insurance, we could access physical therapy services without a referral. I called a PT office near me to ask about it. They explained that while I didn't need a referral, I did need an order.

healthcare speak:
Order: to give a prescription for
referral:
the process of directing or redirecting (as a medical case or a patient) to an appropriate specialist or agency for definitive treatment

I called the neurologist's nurse. Before calling me back, she must have called the rehab doctor's office. She reported that they had not hurried to contact me since they have no openings in the near future. She convinced the doctor to sign an order for PT in the meantime. The rehab doctor's office called me that afternoon to set up my appointment for late January. I have a physical therapy appointment on Monday.

Since the health downturn, Ralph has been lifting me several times a day to and from my wheelchair. He is having back pain, possibly related to lifting, possibly not. Either way, I'm sure the lifting isn't helping.

I called my local MS Society office to ask about what help we could get. Their equipment guy told me that a Hoyer lift is one of the most frequently purchased items by insurance companies. He said that he would have a social worker call me back about home health aides, but so far I have heard nothing.

The slow pace of this process and the amount of dead ends I am discovering are frustrating me.

At the same time, the world has been focused on an economic downturn and the United States' presidential election. Because of the gadget I inserted into my last blog entry, I was invited to insert another.

Enter your name to get the REAL Washington story! First Name: Last Name:

When I used it at the end of a day of dead-end phone calls, it felt like a Sign.

To help my family and to help myself, I must become a health care activist. The only way to make its so it is not totally selfish activity is to make it a broader effort. It cannot be about me, it has to be about us.