Editor's Column - July 2009

tim-aug03The Americans with Disabilities Act has its 19th anniversary this July 24th, and guess what? Access Press is 19 years old now, too. It’s always good to have this annual reminder of how the Minnesota disability movement resulted in this paper at the very same time that the ADA was born on the national front. Many of those who were the authors and advocates of the ADA legislation are gone, but they would be so happy to see the personal and social accomplishments that the ADA has resulted in. If you know someone who had a role in the movement back then, be sure to extend special thanks to them this month.

While the ADA anniversary is a time to celebrate, it’s also a time to recognize that many pieces of the original ADA have never been achieved, and that with funding cuts, some of our rights are being threatened. In all human rights movements— civil rights, women’s rights, gay rights—there have been times when it seems like things have stalled. We must work to help President Obama recognize the need to create real deadlines, and to push Congress to force the enactment of all of the provisions of the ADA. President Obama had the example of his father-in-law, Frasier Robinson, who lived and accomplished much with MS. We need to ensure that he remembers and society recognizes the contributions that people with disabilities make in our families and our communities, when given a chance.

Right now, when funding for some of our basic needs is being taken away or decreased, we can lose excitement about our future in fear about the present. It can be hard to see how much has been accomplished by the ADA and how much our country has invested in accessibility programs for people with disabilities when they may be taking away our ability to even get out of bed. Those of us who depend on personal care assistants and other direct support professionals for assistance in daily living are worried. If PCAs cannot make a livable wage, we won’t have the ability to participate in society, and all of this hard work and investment will have been wasted.

Our own governor’s cuts, or unallotments, to the Department of Human Services and to the Personal Care Attendant (PCA) program are already affecting my life. The agency I use is concerned about allowing any one PCA to go over the 275-hour-per-month limit, and so it has cut schedules for PCAs. This is already decreasing the pool of available PCAs, and I’ve been training more and more people who are less qualified to understand issues of care that can endanger my health or even my life. As just one example, I was bleeding the other day, as I could see on the PCA’s glove. But I couldn’t see the source, and the new PCA didn’t think it significant. Neither of us knew if this was the start of a new skin wound. I’ve just had one wound close after three years of daily care by a visiting nurse. Another might mean bed rest for months.

Many direct support professionals have been able to support themselves and their families only by working double shifts, or for multiple clients. A maximum of 275 hours per month probably pays around $3,000 per month before taxes, for about 60 hours of work per week. After taxes, it may be just enough for housing, food, a car payment and gas. Forget health insurance, kids’ clothing, educational costs, and the occasional entertainment or vacation. So the new maximums will cause a lot of PCAs to find other jobs that will permit them to make a living. And we will lose PCAs that know our individual care routines and who can maintain our continuity of care. Many of us will end up hospitalized, and that will cost us all much more in taxes. Of course, the hospitals are getting cut too, so they won’t have the resources to take adequate care of the vulnerable people that Governor Pawlenty has forced into these situations. President Obama should sign that community service attendant act, now.

So back to our birthday. Access Press was founded in 1990 by Charlie Smith and his family. For many years Access Press was published out of their basement. In about 1997, Charlie moved the paper to the Griggs Midway building, at the corner of University and Fairview, and we’ve been here ever since. You’re always welcome to come in and see how we put this thing together every month. We love to see our readers!

And we hope you’ll love to see our new Access Press web site at www.testing.accesspress.org. It’s been a long time coming, but it’s finally here. It’s not completely “finished” yet (is any Web site?), and we will be adding even more interactive features. You’ll be able to comment on articles; we will be posting new articles throughout the month; and you can get updates of new articles on our site through RSS feeds. You’ll even be able to get Access Press on your iPhone. There will be more access to calendars and to the Directory of Organizations. And articles won’t be limited by word count, so we can bring you more in-depth news. I encourage everyone to go to the site and see what works and doesn’t work for you. Let us know what you’d like to make it more usable!