Foto Fabulous Valentine Friday

In honor and celebration of great big love..... Happy Valentine's Day! to everyone from Jacob and his Aunt Berta.

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Jacob. Down Syndrome. Advocacy. What's Hot.

“Never doubt that a small group of thoughtful committed citizens can change the world. Indeed, it’s the only thing that ever has.” -Margaret Mead

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There are some changes that we chose and there are others we don't... changes that we embrace or struggle against but are recognizable both in there timing and progression. Then there are the changes that are so stealthy that when you look into the mirror, the difference is hard to pinpoint because what you see in the reflection seems to have always been there even though you know it might not have been.

And so it goes with advocacy and the intensely sharper focus of that advocacy when a specific little person's future is involved... which then translates so easily to the future of all the other little people just like Jacob.

This Down syndrome advocacy bug didn't bite just Jacob's parents, I suspect it has bitten most everyone who has met him in some way.

So, as the world is full of good causes that are hard to keep up with I thought I would occasionally do an advocacy post of topics and issues that are currently hot, including actions that can be taken to support them if you so choose.
 
Enjoy!

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TWO THINGS

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1)

Financial planning is tough. We are not experts yet but we are working on it and the fact that it requires workshops and lawyers is some indication of how complicated it is.

 

The ABLE Act isn't a silver bullet but will provide a very good tool to help!!

The ABLE Act

The ABLE Act would amend the tax code to create tax-free savings accounts for individuals with disabilities and provides individuals with disabilities the same types of flexible savings tools that all other Americans have through college savings accounts, health savings accounts, and individual retirement accounts.
 

WHAT TO DO?  
The simplest way to vote for support. Sign this petition on Change.org >>>>>>> LINK
It's getting a lot of attention on social media - so share with friends!
 
If you are a glutton for detail, more information is here >>>>>> LINK
The link above has additional direction for how to contact your legislators to encourage them to sponsor the bill the old fashioned way.

For the overachiever multimedia crowd, here is a link to the media page that will give text to cut and paste onto various Government Facebook and Twitter sites. >>>>>>> LINK

 

Thank You!

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2) 
If you live in Maryland, I am about to encourage you to support legislation that requires medical institutions to not be stupid. Isn't that what policy is for? Argh. I hate stupid laws, but sadly I think it is warranted given the horror stories I have heard from parents about their experience with medical professionals/institutions after prenatal and/or post birth diagnosis of Down syndrome. Everyone has a story. Not a few, not a majority, EVERYONE has a story about someone in the hospital or doctors office... most of the time from the Doctor (the docs!) making some awful ill informed comment or presenting outdated, miserable information - OR - sending them home with a pat on the head and no information at all.

So.... Here's the law ....    >>>>>>> LINK

.....that will require the health department and the like to have info available (info from this decade!) - duh - and that any institution or facility that may be making a diagnosis also have current info available as well as contact information for the local support groups.  

WHAT TO DO? In the link above, click on the name of the sponsoring senator and that will take you to his contact info. You can email him to say you support it. And/or contact your own representatives to say the same thing.

There is a hearing at the end of this month I believe so if you are so inclined, the sooner the better.

Learning about a Down syndrome diagnosis can be jolting and scary, it shouldn't be made scarier and more traumatic by ill informed medical professionals. Especially when the truth is that while new parents are faced with the daunting task of learning about a whole new world they may not have been prepared for... that new world may have challenges but is equally full of hope and possibility. 

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