Michigan Disability Resistance

A single infusion of a gene therapy for hemophilia A led to normalization of factor VIII levels that persisted for a year, British investigators reported here.

As Capitol Hill heads toward a possible federal government shutdown, letters to more than 100,000 Michigan children could go out next month warning their health coverage is in peril.

Congress let authorization lapse in September for the program that helps states provide health coverage for children, young adults and pregnant women in low-income families, including about 116,000 in Michigan.

That now appears to be one of many bargaining chips in negotiations to pass a short-term spending bill in order to avert a government shutdown as soon as Saturday.

This is a remarkable 4 part series about the failure of support systems for adults with significant disabilities. This is part 1. Links to the other 3 parts are at the bottom of the article. They have used some complicated system of content delivery, so you have to work to get to the bottom of the article.....

https://goo.gl/Na4Woz

On a bitter March morning in 2014, I picked my way across an icy corner in Point Breeze and knocked on Patricia Sankey's storm door. I heard slow, heavy steps and the rattle of keys, and then Sankey opened the inside door.

She was a short, round, older woman dressed in a pink housecoat. Tendrils of cigarette smoke pushed through the storm door's vents; the air inside the home was cloudy with it. She appeared wary.

I asked if she was related to Christina Sankey, 37, who had intellectual and developmental disabilities (I/DD) and had wandered off two weeks before while under the watch of a state-paid caregiver. Her body was found the next day on a sidewalk, five miles away. She had frozen to death overnight.

"I'm her mother," Sankey said.

I told her that I was trying to understand how her daughter went missing in the first place, and that no one seemed to think it was a big deal that Christina's caregiver lost track of her. That the police and coroner had been quick to dismiss the death as a tragic accident with apparently little investigation. That there had been no mention of potential neglect by the caregiver, the way there would be if Christina had been an equally vulnerable child.

The Air Carrier Access Act, signed into law in 1986, led to the implementation of regulations designed to ensure equal access in air travel. While the U.S. Department of Transportation has a poor track record of enforcement, the law is the reason that I have been able to travel in spite of my disability. Together with the Americans with Disabilities Act, the ACAA positively impacts my life as a wheelchair travel blogger and person with a disability.

Civil rights in America are important. The ACAA, like other civil rights laws, is designed to protect the American ideal - that all people are equal and possess a right to life, liberty and the pursuit of happiness. When a person with a disability encounters any violation of their civil rights, they are left to feel unequal, unimportant and undervalued. It is the weight of those feelings in myself that has led me to take such a strong stance against discrimination on the basis of disability, wherever it exists - including in the air travel industry.

After taking more than 500 flights as a wheelchair user, I have uncovered a pattern of discriminatory civil rights abuses by airlines which have negatively affected my air travel experience.

The three most common violations of the law, based on my own experience, could be easily corrected if the Department of Transportation would enforce the law without hesitation. These violations are:

Denial of Preboarding

Failure to Return Gate-checked Mobility Equipment

Failure to Provide Individual Safety Briefing