Rather than writing my intended blog, I have spent the weekend trying to follow directions. I have been fortunate to keep my son Billy as a dependent on my health plan even after my retirement. A couple of weeks ago I received papers from the insurance company  to submit to maintain this coverage. Since the due date was stated as October 15 I set the material aside. Friday (September 4) I received another set stating FINAL NOTICE (never a good sign). But now I understand why so much time has been allowed.

An important part of the documentation required is the completed Incapacitated Minor form signed by our physician. Since I did not have that form I searched until I found a link where it could be downloaded. The URL was clearly printed with the usual assemblage of characters followed by a space and CoverRequestedChild.pdf, with the entire URL underlined. I tried to access the form, alternately typing it with the space, without the space, with the underline, and without the underline. I checked and double checked, always looking for my customary typing errors, always going to a non-existing site notification. At last I called the help number listed. This is where the fun began.

I was delighted to receive a courteous, encouraging female voice, eager to answer any questions I might have.

“I am unable to access the CoverRequestChild.pdf.”

“Did you enter the URL listed?”

“Yes I did.”

“And what did you see?”

“The indication that there was no such page.”

“I don’t understand.”

At this point, I asked if I should insert the space or the underline and she informed me that she would need to ask her supervisor and would I please hold. I held. Some time later she returned to the phone, stating “The space should be an underscore and there is no underline. You know, a lot of people have asked about that.”

While I had this friendly person I decided to ask a couple of other questions.  I told her that I have a letter from the insurance company stating “William will be continued as a dependent on your Family Type certificate until he marries or ceases to be incapacitated (capable of earning a living).” I wondered if that would serve the purpose.

“Please hold while I ask my supervisor.” I held. “No, that is no longer acceptable.”

Another question: “I have a letter from our physician dated 2007 stating in part “William has Down syndrome, a condition present at birth. This is a lifelong condition which will render him unable to support himself.”

“Please hold while I ask my supervisor.” I held. “No, that is not recent enough.”

Actually I do have another question: Is it possible that someone thought Billy would no longer have Down syndrome after three years?

Now I will get the physician’s affidavit, fill out the forms, and try to get all of it in by October 15. I’m glad I have that much time to complete the process.

Does anyone else have this much trouble filling out forms?

Jane and Billy Schulz heard good news about Rosa's Law.

U. S. Senator Barbara A. Mikulski from Maryland announced that her bill introduced to eliminate the terms “mental retardation” and “mentally retarded” from federal education,  health and labor laws passed the Senate on Thursday night by unanimous consent.

This is big!

For months people have been blogging, emailing, and twittering about the misuse of the “R” word. If you would like the background and my response to this effort, you may look at my earlier blog on the “R” word.

Called “Rosa’s Law,” the bill changes the phrase “mentally retarded” to “an individual with an intellectual disability” in health,  education and labor law. Senator Mike Enzi, a co-sponsor of the bill, states that “The bill is simple in nature but profound in what it will do when it is enacted. For far too long we have used hurtful words like ‘mental retardation’ or ‘ MR’ in our federal statutes to refer to those living with intellectual disabilities. While the way people feel is important, the way people are treated is equally important. Rosa’s Law will make a greatly-needed change that should have been made well before today – and it will encourage us to treat people the way they would like to be treated.”

The passage of this law does not guarantee that people will cease to use pejorative terms to describe those who have disabilities, but it is a start. Local and federal agencies will be required to use the new term, as will school personnel. I remember, as a special educator, having to inform parents that their child had been identified as having mental retardation; I also remember their reactions. I hope that this new term will be kinder and more readily accepted. However, there will always be a need to insure that children with disabilities of any kind are treated with respect, regardless of the label used.

I think the most important aspect of this law is the way it was initiated and voted into law. The inspiration for the law came from the actions of a family whose daughter, Rosa, was diagnosed with Down syndrome and labeled retarded at school. The mother teamed up with other parents and her state delegate to introduce a bill to change the terminology in her home state law. A hearing on the implications of changing the law was held prior to consideration at the Maryland  General Assembly.

At the hearing, the testimony that had the greatest impact was given by Rosa’s 11-year-old brother. He said “What you call people is how you treat them. What you call my sister is how you will treat her. If you believe she’s ‘retarded,’ it invites taunting, stigma. It invites bullying and it also invites the slammed doors of being treated with respect and dignity.”

This story is a perfect example of effective citizen advocacy, according to Senator Mikulski. She said that this family “pulled together to pull us all to another way of thinking. They fought for the respect and dignity of a loved one. The more than 6 million people with intellectual disabilities in America deserve that same respect and dignity.”

A similar bill has been introduced in the House and has 63 co-sponsors. The law does not affect any services, rights, responsibilities or educational opportunities for people with intellectual disabilities.

There is no end to what we can accomplish when we pull together!

Do you think this law will make a difference?

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Read Billy Schulz's blogs: "I Got a Good Life"