This is testimony presented to the Minnesota Legislature in March:

I was diagnosed quadriplegic in 1974 when I was 21 after diving off an unfamiliar dock into a shallow lake just north of the Twin Cities. After a six-month hospital stay at the University of Minnesota, I went home and my parents, along with my younger brother and sister, gave up much of their independence to take care of me without outside help for several years. 

After those years, I applied for and was fortunate to get personal care attendant (PCA) care 24 hours a day because of my respiratory difficulties. I am unable to clear my own throat and need help many times a day just to keep breathing. I also have no use of my hands or legs and so need assistance with activities of daily living. But because of the PCA help I receive, I have been able to live independently, get an education, marry, and work full-time at a professional job. I have also been a long-time advocate for the civil rights of people with disabilities. I have tried to “pay it forward” and help other individuals with disabilities to live more independent and fulfilling lives.

But since the mid-1990s it has been very difficult for the agencies who manage my care and for me to hire and retain PCAs.

What has changed over the years making things ever more difficult? 

Three major factors:

1. Over the last 12 years, the program’s reimbursement rate has only been increased by $1.56 per hour – an average increase of less than 13 cents per year. The average PCA makes approximately $12.38 per hour, resulting in high turnover, reducing quality, and creating instability in the lives of people with disabilities and older adults. We desperately need a pay rate framework that will automatically increase reimbursement rate yearly.
   
2. Agencies are unable to afford to pay wages and benefits comparable with other jobs requiring similar education and training.
   
3. PCAs are asked to do a broad range of tasks in an environment where they are responsible for people’s lives and health, without substantial training and with little oversight.

These have been extremely difficult times for myself, for my friends and for the PCAs. I personally know many agencies that have gone out of business in the past few years because of the low reimbursement rate. I also know people that have opted for congregate care because it was too difficult on friends and family when there were no PCAs available.

It is a never-ending struggle for my agency to find qualified, dependable PCAs who can provide my care. For many hours a week, no one is scheduled to come in to help me, which leaves my wife to provide many hours of essential care. But during those hours when I have no staffing, I must stay in bed. I am unable to get up, get dressed and work or even take a shower. In other words, by not having PCA support I am unable to be the productive citizen I have always been proud of being. One answer for someone like me is to just put me in a nursing home. But I remind you that study after study, in Minnesota and in Washington D.C., has found that it is cheaper, for a person with needs like mine, to get care in the home rather than in a congregate care facility.

I urge you to call your legislator and request them to vote in favor of Rep. Todd Lippert’s bill, House File 663, or Sen. Paul Utke’s bill, Senate File 497, which will provide actual data on the business costs of providing PCA services, including comparable jobs in this economy. This data will then be available to set PCA rates so that people like me can continue to live in my home, be productive and cost less than congregate living. We cannot let the PCA program fail, but it has been dying a slow death for many years. The legislature must do something major to establish a framework based on real data to set reimbursement rates.

You know, one of the things that I and so many people with disabilities have heard over the years is, “I don’t know how you do it, I don’t think I could do what you do. You’re a real inspiration.” Well, I know you could do what I have done. But I guarantee that neither you nor I could do what I have done without the PCA program. Please do not let the PCA program die.