Editor’s Column – August 2009

July 26 marked the 19th anniversary of the Americans with Disabilities Act (ADA), which has had incredible effects  on all […]

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Tim Benjamin, editor

Tim Benjamin, editor

July 26 marked the 19th anniversary of the Americans with Disabilities Act (ADA), which has had incredible effects

 on all of us with disabilities. It’s time once again to say a big thank you to all the authors and to President George H. W. Bush for signing the ADA in 1991. Many thanks also to President Obama for honoring the anniversary with a celebration and speech this year.

The travesties that are still occurring in the disability world are vast. I was recently asked, after the 35-year anniversary of my injury, about the ADA and how it’s affected me. I said, “There’ve been many steps forward and some steps backward.” By steps forward, I meant that we have gained recognition of our rights to independent living and to work while maintaining our needed services. And the ADA led, of course, to milestones like when our president recently signed the United Nations’ international treaty on disabilities. But over the years, all of us have seen the enforcement of our rights take a step backwards even while the laws to protect us are in place. A current example is in our own front-page article this month.

A class-action suit was filed on July 10 in St. Paul’s federal district court on behalf of people with developmental disabilities who were restrained at a state mental health treatment facility in Cambridge. How could anyone in the 21st century, in the era of the ADA, think the use of restraints would positively affect anyone’s behavior, or improve their ability to control their own behavior? What about some of the cutbacks made to the Department of Health and Human Services to balance our own Minnesota state budget? Every one of us who needs PCAs will be affected one way or another-losing hours, losing eligibility, or losing good employees because of cost-of-living raises being cut out of the reimbursement rates to the PCA agencies.

These are all things that can be fixed. We have to let people know that any more steps backward are unacceptable. We need to get busy and call and write our national senators and representatives and let them know that the disability community will not be lost in healthcare reform. We want the community attendant service act to be passed and written into the new reforms. Beyond that, we want options on where we can live and where we can go to school. We want improved public transportation options, and we want laws guaranteeing the number of people with disabilities in the workplace. We want effective affirmative action. The government needs to offer opportunities for people with disabilities to work, and to offer some work-at-home options; we need options on work schedules other than 9 a.m. to 5 p.m., and job sharing opportunities. We need more representation in the government and in our social service programs. We want to work, and to make better lives for ourselves. And let’s make sure they know! I will soon add a form letter on the Access Press website that you can download and use as a guide to send to your legislators.

Chris Duff, CEO of Axis Health Care since its inception, has resigned and the Axis board has announced that his position will not be filled. We’ve been assured that the consumer will not see any changes, and we hope that will be true. As for me, an Axis client, I’m going to just watch how things proceed.

I think the Axis Health care model of care coordination could be tweaked and made better. This may be the best time to re-examine the model and strengthen its best services, like setting up appointments and transportation, offering a nurse to be with you at doctor appointments (at your request), fast-track procedures for reoccurring problems and quick authorization on many durable goods. Costs are always a challenge and in health care there’s no question about that. But this program has kept people out of the hospital with directed in-home services like IV treatments and wound care, and has helped many of us in ways that can be measured in how healthy we stay in the long run.

Have a good time at this month’s state fair, and a continued safe summer. If you pick up the paper at the state fair, thank our sponsor UCare. And finally, check out our new Web site and consider buying a print subscription. It’s one of the best bargains around for people with disabilities!

  • Work with your care provider to stay healthy. Protect yourself. Vaccines are your best protection against being sick.
  • Wash your hands! Hands that look can still have icky germs!

You are not alone. Minnesota Autism Resource Portal.