Will You Finally Be Quiet Now?

People likely ask themselves, "Why does Diane continue to advocate for ME even after ME has finally gotten the care she has needed all these years?" 

"When will she finally just move on, be happy with the outcome, and live for today?"

I think this is a valid question, and I would love to address that here.

It is this simple, 

we have so much work to do to right this wrong. 

So many still do not understand how truly heinous this was. 

So much ignorance is still a part of our Disability Rights History. 

In fact, I actually had one individual say to me, after I shared with her that ME finally qualified for Katie Becket, 

"Will you finally be quiet now?"

Yes, this was said to me, in my kitchen no less, by someone I have known for years. 

Someone who has not walked a day in my shoes.

Someone who is not a mother of a child with disabilities. 

A person who has not experienced what it feels like to be a mother who could not get the care her child so desperately needed in the state of Tennessee. 

In shock, I did not reply, I simply turned away, and left the conversation this individual was having with my husband concerning work issues. 

But I put it away in my heart, and remembered to carefully check my audience I was speaking to going forward.

That individual's one ignorant statement was a reminder to me how far we have to go to teach others. 

That even those in our lives who watch us teach daily, may simply not be an advocate for my child and her rights. 

The same rights this individual currently enjoys without thinking about them.

Should I be silent after we are finally getting what ME finally needs, 16 years almost too late? 

Absolutely not. 

The egregious actions by both the state of TN, by withholding Katie Beckett for almost 40 years after all other of the 50 states passed Katie Beckett in some form or fashion, *

and after MANY years of our primary insurance and the Memphis medical community denying care to ME that was SO very needed, **

warrants me 

to never 



"be quiet."

*The state of TN withheld the Katie Beckett program, also known as TEFRA, that has been in existence since 1982. This was not only cruel to many Tennessean families who needed it so desperately all these years, it also opened the gateway to abuse by self funded insurance companies. You see, in many states, the only oversight for Self Funded companies is the accountability to the Katie Beckett, TEFRA, programs. 

**Years and years of advocating for Katie Beckett in TN with anyone that would listen to me, years of being denied much needed care by the medical community and our primary insurance, and a VERY long, exhausting, traumatizing process to finally qualify for Katie Beckett TN. 

This entry was posted on Monday, November 20, 2023. You can follow any responses to this entry through the RSS 2.0. You can leave a response.

One Response to “Will You Finally Be Quiet Now? ”

  1. So you may have won the battle, but not the war. You can’t be quiet! You lived a nightmare trying to get ME qualified for Katie Becket benefit. This whole horrible fiasco should never have happened. ME is so fortunate to have a mama bear that didn’t give up! I'm sadden to think of all the individuals who were denied and their advocates gave up.