This month Access Press is looking at myasthenia gravis. When we first started talking about this disability we were not too sure where we would find someone with myasthenia gravis for a personal view; none of us seemed to know much about it. We all decided to do a little research and spend some time thinking about it, and we acknowledged that maybe we would just have to highlight a more well-known disability. Then we discovered at the Access Press board meeting that JoAnn Enos, one of our longtime board members and board secretary, lives with myasthenia gravis. I had thought that I had learned quite a bit about JoAnn over the years, but I had no knowledge of her having this disability. Learning this underscored the need for attention and press coverage. Then in a second wake-up incident, as soon as we started doing research and found some interesting information from a national organization, we discovered that that organization is right upstairs in our office building.How blinded, uninformed can we be? How many hidden disabilities do we, even as the disability community, not know much about? It’s possible that some of our close friends and colleagues may be struggling with a “hidden” disability and we are not even aware. I also think this story of discovery underscores our need to constantly become more aware of the needs of, not only our fellow people with disabilities, but all in society who are struggling with things not recognized as disabilities but which in many ways are disabilities! How much of a disability is it to live with a below-poverty income, as many of us with disabilities do right along with our PCA’s. How able are people with alcohol and/or drug addiction? Or those who are functionally illiterate or unable to speak fluent English?

Those questions are on my mind in part, I guess, because another article we are printing this month comes from the Disabled Immigrant Association, representing a community where one of the major problems is literacy and lack of education, which only enables people to get low-income jobs. But this organization is doing a great job and they’ve asked for help from our larger disability community in Minnesota. I think it’s important that we do help, and I encourage the directors of the major disability organizations to offer these folks some help in whatever form. They need classrooms or space they can use as classrooms, as well as people willing to volunteer to teach the English (ESL) that these immigrants will need to find their way through our maze of social services. They also need help finding funding resources-yes, I know we all need help with this, but let’s reach out!

As many of you know, the state’s personal care attendant program has been making some changes. Many of the changes are needed, but the unintended consequences may be very costly. There are definitely some increases in administrative costs, both to the provider agencies and to the state agencies that oversee the program. Unfortunately, the administrative cost increases to the provider agencies will probably trickle down to mean lower wages for the PCA’s themselves. Lower wages for PCAs means a smaller pool of available PCAs for the clients. With a smaller pool of PCAs, the unintended consequences will mean a faster turnover of PCAs, resulting in decreased quality of care because of lack of continuity and knowledge of the client. Also, fewer PCAs very well could mean some consumers may not be able to stay independent because of lack of personal care support.

It’s very important that the provider agencies have current documentation from doctors, and streamlining the process through a common form for doctors’ orders is a fabulous idea, but how many of us often have drastic changes in our need for PCA support (the kind that require new doctors’ orders)? The bigger problem in this area is the backlog of nursing assessments for PCA hours. I would like to see the Department of Human Services streamline the assessment process rather than be concerned with doctors’ orders. In no way am I saying doctors orders aren’t an absolute necessity but I think there are more important issues to be concerned with. I think everyone involved had very good intentions for increasing safety and quality in the program and saving money by cutting out fraud, but I am afraid that those will not be the only results. Stay tuned, stay informed.