Oh, Dear Congress –

Dear Congressman Gallagher;

Voting Yes on the American Health Care Act and then following your vote with a statement that included, “This legislation is far from perfect and I look forward to continuing the process of improving the bill as it makes its way through the U.S. Senate” does not give you a pass on accountability. Nice try, but not good enough.

Sincerely put off by the vote,

Daisy

Dear Speaker of the House Ryan; 

I fail to understand the celebration after passing the American Health Care Act by only three votes. Were you celebrating a skin-of-your-teeth win? Or were you cheering for the Senate to take over and consequently take the blame for the resulting badly written legislation? Oh, by the way, did you even read the bill? 

Not My Speaker, 

Daisy

Dear County Executive Nelson;

Thank you for being frank with our Governor when he arrived for a photo opportunity. I noticed, as many others did, that the Governor responded rudely and would not state his position on the Health Care Act.

Still on your Side,

Daisy

Dear Governor Walker; 

I was surprised you didn’t respond professionally when asked your position on the recently passed Health Care Act. After all, you mentioned earlier that day that you were looking forward to sticking it to people with pre-existing conditions, er, I mean taking advantage of parts of the law that would allow you to waive essential care requirements. 

Sickly, and getting sicker, 

Daisy.

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At the Risk of Exaggerating – Research Rocks.

Seen on Facebook – shared by reliable people on my timeline

Here are nine people who will lose their coverage under Trumpcare and one who won’t:
1. a diabetic
2. a cancer survivor
3. an asthmatic
4. someone with allergies
5. a heart disease patient
6. an HIV/AIDS patient
7. someone with chronic lung disease
8. someone with Cystic Fibrosis
9. someone with Multiple Sclerosis
10. any member of Congress
List by:
Dr Cathleen Greenberg
Oregon Health & Science University
Residency Family Medicine
Yale University School of Medicine

I kept hoping it wasn’t true, wasn’t that bad, so I called on my closest tool: the Internet. I searched for a reliable source (no alternative facts or fake news would do) and found the following.

In summary, the decision will be left up to the states whether to maintain two parts of the Affordable Care Act (a.k.a. ObamaCare). The first: the requirement to cover Essential Health Benefits, including but not limited to maternity care, birth control, and emergency room visits. The second is the part widely feared. The replacement for the Affordable Care Act would let states decide whether or not to keep the Community Rating Rules, the piece that insists coverage be available to all. All, that is, regardless of their zip code, gender, pre-existing conditions, and more.

Some states will weather this storm. Those (Minnesota, I’m looking at you) accepted federal funds to establish their health care exchanges. They set up a system that worked for their people, and they’re in a good place to continue covering state residents.

Mine? Under the questionable leadership of Scott Walker, a man who turned down federal funds for anything he could, a man who seemed to fear cooties from any funds that were generated thanks to President Obama, I fear my good state of Wisconsin will go with the GOP flow and let those two pieces of the AFA lapse.

We citizens with preexisting conditions will not be cut outright, but we’re likely to see our premiums go sky high to the point where we can no longer afford health insurance. And that, my friends, is scary.

What can we do about it? We can lobby. Call, write, email, call, write, and email our legislators. Give them these two points:

  1. It is not equitable for Congress to exempt themselves from the tough results of their own lawmaking.
  2. Forcing people to pay extreme premiums to get the treatment they need is wrong. Simply put, wrong.

I think it’s a good time to write a few postcards.

 

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Encore – Almost – for Autism Awareness

It’s April, again. Autism Awareness Month. What are the numbers now? A few years ago, autism occurrences were estimated at 1 in 88. That’s looking almost common, rather than unusual.

Well, folks, it’s time we start learning about each other, neurotypical or on the autism spectrum. Even under the old numbers of 1 in 166, the estimates indicated so many children and adults with autism that “normal” needed redefinition.

Awareness, people, is not enough. Awareness is a low form of knowledge, and knowledge itself sits down low at the base of the learning pyramid. Awareness means knowing that the student sitting next to your child in class might have autism. Knowledge and understanding come around when that child responds to gestures of friendship, perhaps awkwardly, yet making a step toward joining the social peer group in some way.

Awareness? Awareness means slapping a multi-colored puzzle-design ribbon magnet on the back of the family minivan. Understanding means that when the minivan next to yours at the red light is moving back and forth propelled by the rocking of the teenager in the front seat, you notice but don’t judge. You might offer an understanding smile to the driver if the opportunity comes up. By refraining from negative comments, a parent provides a role model for the rest of the minivan passengers. Parents can take it to the next level by explaining to the others in the car pool why it’s so important to be supportive of others, neurotypical or autistic or with no label at all.

These days, with a dangerously unqualified Secretary of Education and a potential Supreme Court justice who has ruled against students with disabilities multiple times, awareness can go to…well, anyway, awareness is nowhere near enough. During this year’s Autism Awareness month, make a vow to move beyond awareness into the category of understanding – or better.

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Out of Sight, Out of Mind? Off the Web, Off our Minds?

IDEA, the Individuals with Disabilities Education Act, is a law that guarantees disabled students a Free Appropriate Public Education. We knew that law inside and out by the time Amigo turned 21 and graduated from both our local public high school and the state school for the blind. Our state department of public instruction (Wisconsin DPI) and the federal department of education both had extensive information on the law.

On Wednesday, a search for information reached this message.

I tried again later. First, I found a page that suggested “Information about the regulations of the Individuals with Disabilities Education Act that was posted on this site has now been moved to a new location. To access this information and much more, please visit: http://idea.ed.gov.

On the idea dot ed dot gov, I found this message. The servers hosting our idea.ed.gov website are experiencing technical issues. We are working to resolve this issue, please check back later.

These two might be outdated, I thought. The first site references the year 2004, after all., the year of major updates to special education law. The links could be 12 years old.

I found an archived report from the 25th anniversary of IDEA.

I found a text file with a copy of the law as it was updated in 2004. Maybe I should bookmark that one.

I found an intact reference to FERPA, the Family Educational Rights and Privacy Act.

The link on the Department of Education page has a red box announcing “Disclaimer!” and leads not to an official page, but this one. It’s sponsored by a group called the Center for Parent Information and Resources. I’d have to look more closely at the organization before trusting their information.

I then found a pdf document 159 pages long with the same information in Major Legalese as the earlier bookmark.

Every other search I made landed on the tech diff statement.

This follows censorship (yes, censorship) of other government informational pages such as information about human causes of climate change. Some of Wisconsin’s “official” web sites have also pulled information that doesn’t jive with our governor’s narrow mind or that of his sponsors.

What’s going on? I’m not sure I want to know.

I know this much, though. We, the people, in order to maintain a flawed but functioning republic, will continue our quest for information. We’ll continue seeking information, and we’ll continue providing information. We’ll also continue verifying and confirming statements. For example: just because Ms. Conway makes a statement on camera three times doesn’t make it true (RIP, Bowling Green massacre victims). 

In this case, out of sight (or out of website) doesn’t mean out of mind.

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Attitude. And a blind sense of humor.

I almost – almost – feel for the director of Amigo’s barbershop choir. But really, he set himself up for this one.

Director Man had the risers set up, the festive scenery in place, and the lights on the choir. He stepped back, looked over the group, and asked, “Is there anyone who can’t see me?”

Without a pause, Amigo raised his hand, the hand not holding his white cane, and the choir erupted with laughter.

They were still chuckling when I arrived to pick him up two hours later. Spark plug, indeed. They’ll have a hard time picking a new recipient for that award!

Amigo in his Elf costume

Amigo in his Elf costume

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Has the calendar regressed? This state senator has.

Chuck and I helped the local arts community by writing a column for the newspaper about Amigo and the barbershop chorus in which he sings. He enjoys rehearsals, thrives on the music, and gets totally psyched up for the performances. We were happy to support them with our column.

The piece apparently got picked up in a Madison newspaper. How do we know? Well, Chuck got a card from the guy who represents our district in the State Senate. We’ll call him Senator Throwback. The card enclosed a copy of our column, and carried a message that said “Saw this in the paper and thought you might like a copy.”

Nice, right? Maybe thoughtful? Politically expedient, too, eh? Almost. It’s likely that one of Senator Throwback’s staff pointed out the article and took the time to find our address, and on and on. We know that. But anyway, how did something that insignificant make the blog?

We co-wrote the article. Both of our names and both of our pictures accompanied the piece. We wrote it together. Senator Throwback addressed the article to Chuck and only Chuck. In his eyes, evidently I don’t exist.

Make no mistake, folks: this omission counts. By leaving one author, the female author, off the note, Senator Throwback made it clear that I do not exist for him. That’s too bad for him, though, because he’s forgotten one very important point: my vote counts exactly the same as Chuck’s does. And Senator Throwback isn’t likely to get mine next election.

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Captions please, Candidates.

The airwaves are full of debates and speaking events and predictions and (dare we say it) television commercials in the markets headed for primary caucuses and elections. There is one thing wrong with many of those TV ads. No, it’s not that they exist or that they’re misleading (although that can be true). I’m not even referring to the shady third party issue ads that crowd the screen all too often.

I’m talking about closed captioning.

The FCC has rules and guidelines for captioning of television shows, whether recorded ahead of time or aired live. Commercials, however, are still inconsistent. Some have captioning, some don’t. And many, all too many candidates bypass the time and the cost of captioning their commercials.

Think of those with hearing losses. Baby boomers raised on loud music, senior citizens with age-related hearing loss, millennials brought up on ear buds – all of these people are likely to miss the details in a well-made commercial. Then bring in those hearing problems not listed above — people with hearing aids or cochlear implants for whatever reason, from illness or hereditary conditions, from environmental problems like combat noise, among others. The size of the group grows.

Think about it. If you’re a candidate or working for a candidate, do you want to leave all of those voters out of your audience? That’s what happens if the ads aren’t captioned.

Closed captioning isn’t free. It costs money, and it costs time. However, paying the captioner and taking the time to load captions into an ad are investments. If those captions help a candidate to connect with voters, this additional cost of doing business can reach voters who may not have heard the candidate’s message – literally.

Readers, do you watch television with captioning on? Do you notice when a show or an ad has captioning – or doesn’t? I’d love to hear from you in the comments.

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Music soothes.

Like the rest of the world, we had a hard time last week, listening to the news coming out of San Bernardino, California. Two circumstances brought it close to home: that the shooting was in a center that served adults with developmental disabilities, and that a school for the blind was directly across the street.

News folks talked to a leader at the center from the blind, announced that no one there was hurt, and they had in fact sheltered some who ran from the shooting site. We felt a small amount of relief.

Then we took a collective deep breath and went on with our lives. Amigo put on his costume for the Barbershop Bistro show, and we headed out of the house. Chuck and Amigo left their phones behind. I set mine on vibrate and tucked it deep in my purse. When we arrived, we set the sad world news aside for a little while.

The show had a 1940s theme. Here's Amigo.

The show had a 1940s theme. Here’s Amigo.

Just a few weeks earlier, we’d been at the local museum for the Festival of Trees. Can you find Amigo in the group? At first, neither could I. He fits in very well.

Jingle, Jingle, Jingle!

Jingle, Jingle, Jingle!

Music soothes. It can’t take away the violence, but it can take us out of the big bad world for a little while, lower our blood pressure, and celebrate being together with those we love.

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ADA is 25 years old!

I grew up with a minor hearing loss in an age where those with “special needs” were segregated from the masses. I wasn’t channeled into special education, thank goodness. I succeeded along with my friends. I even managed to earn a college degree in music, despite a certain professor who insisted that my hearing loss meant I shouldn’t be in a conservatory of music at all.

Years and years later, a principal at Amigo’s school glared at me and growled, “Don’t throw ADA at me; it makes me angry.” Angry or not, we threw IDEA at him and he had to follow the law.

What’s ADA? What’s IDEA? Why are they important to me and important to my family? I just posted on Connections Academy’s national blog. Read and enjoy!

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