Archive for the 'Advocacy' Category

Cold hard rules from ALSA Greater New York

Wednesday, March 31st, 2010

Here is what they told me:

We do require that patients who receive wheelchairs from our loan closet be in the process of getting a custom chair funded by their insurance.  Our loaner chair is meant to be something that is used while you are waiting for your chair that is on order.

Funny… my $$ donations didn’t have rules and requirements attached. I thought my donations would be used on ANY pALS in need. So, people who have to wait for their chair to be ordered, or those without insurance, or who cannot afford the co-pay, cannot borrow a wheelchair from ALSA Greater New York. How exclusive, and just wrong! I will not be donating my equipment to ALSA. There are other organizations without such rules.

Reactions to the NY Times Article

Tuesday, September 15th, 2009

“Medicare Would Rather Buy $8000 Computer than $150 iPhone App”
Read post on GIZMODO The Gadget Blog.

“This is a very powerful article. As the cost of helpful technology drops, companies are finding it hard to compete and keep up.”
Read post on A Jew in Reindeer’s Clothing.

Chris Parandian says:
“insurance companies would rather spend $8000 on a bulky PC device that requires disabling most of the functionality of the PC instead of $300 on an iPhone that can change someone’s life.”
“we’ve lost two family friends to A.L.S., this is an outrage…”

ALS Is Front-And-Center In The New York Times Again!
“This time there is an excellent article on covered technology, ALS, and common sense (and how they don’t converge). People with ALS have much to contribute to the discussion of healthcare reform and healthcare delivery.”
-ALS Advocacy

“Need another reason to hate insurance companies? Even their computers suck.”
-LiVEJOURNAL

This one is my favorite:
“The NY Times listens to those who struggle to use their voice…”
-All Together We Can

“Medicare/Medicaid won’t pay for the iPhone or the app because the iPhone has more than one function. It can be used for purposes other than treating a disability, so they won’t cover it. This is absolute insanity.”
-I4U NEWS

“Insurers Fail To Keep Up With Speech Technology, Deny Funding For Devices That Multi-Task.”
-Medical News TODAY

“Woman replaces $8,000 medical gear with iPhone”
-Telecom Asia
my note: I actually did unlock my $8,000 speech generating device for $45. I still found it useless. My home computer is an ordinary Mac Powerbook. After my disappointment with the dinosaur-like device that Medicare and my secondary insurance provider approved and paid for, I footed the bill myself to turn my own computer into a fully functioning AAC device complete with dual switch access; a superior layout program for customizing or designing my own on-screen keyboards, functions, mouse behaviors, etc., all accessible by any input device or by various scanning methods; a switch program to run all the scannable keyboards/panels; an excellent communication program for speech; some of the highest quality voices to use as my voice; an on-screen keyboard program with the most amazing and intelligent word/phrase prediction and completion I have ever experienced. The result was a great computer that is also a highly sophisticated AAC device. I spent less than $900 to turn an ordinary computer into an alternative access speech generating device. That was two years ago. Since then, I purchased an iPhone and an app called Proloquo2Go. This is what portability is all about!

“Text-to-Speech Technology Reaches an Inflection Point”
-Bits Blog, New York Times

-kara

The NY Times on AAC, New Technology, & Medicare Coverage

Tuesday, September 15th, 2009

Aiden and I appear on the front page of the NY Times today. I’m using my iPhone to speak while snuggling with my beautiful boy who uses his iPod Touch to play music, videos, educational games, and slowly, but surely, to communicate with Proloquo2Go!

This is an important article that addresses Medicare’s reluctance to recognize new technology (and great cost saving) for people with speech impairments,.

Full article is here:
http://www.nytimes.com/2009/09/15/technology/15speech.html

-kara

My Nephew to Walk for pALS

Friday, July 3rd, 2009

My nephew Josh will walk to raise money for his local ALS Association chapter in Atlanta on November 14, 2009. I have friends with ALS all over the world. I am so touched that Josh will walk in my honor. The ALS Association provides much needed services and equipment to patients and their families. My sister Kelly raised over a thousand dollars for our local New York chapter in just a few days! Way to go Kelly! Rock on Josh!

Sponsor Josh at his Personal Fundraising Page

The Jonathan Carey Foundation

Wednesday, January 21st, 2009

What happened to Jonathan Carey severely wounds my heart. That beautiful boy, with the trusting eyes and youthful smile, left in the care of the uncaring and callous. Procedures and jobs protected, an innocent boy not. I am enraged and tortured as if I were his mother.

Learn how you can change things so that our most vulnerable children will be safe.

The Jonathan Carey Foundation
http://www.jonathancareyfoundation.org/

Helping Vulnerable Children

“Our mission is to raise awareness and to advocate for the most vulnerable of children, the orphaned, the abandoned, and the abused. Our purpose is also to raise funds for advocacy, to care for and support children, and to work with other existing organizations that are currently caring for children in need, and to advocate for necessary changes for children and their families.”

JONATHAN’S LAW       A.6846-A
http://www.jonathanslaw.org/