Wednesday, April 13, 2011

Important Information About Children with Pre-existing Medical Conditions

The new health law, the Affordable Care Act, requires insurance companies to now cover children with pre-existing conditions. Here is a link to the government website that describes new help for people with disabilities under the ACA including a navigation system to help find public and private coverage.


Sincerely,


Laura Goodhue
Executive Director
Florida CHAIN
561-972-4090 office
954-213-8647 cell
561-972-4087 fax



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Tuesday, April 12, 2011

Learning How to Communicate with Someone Suffering From Alzheimer's Disease

As I thought about this I came to a simple conclusion. Instead of trying to change Alzheimer's World, instead of trying to fight Alzheimer's World, not only would I accept Alzheimer's World as a reality, I would go into Alzheimer's World and learn how to communicate effectively...
By Bob DeMarco
Alzheimer's Reading Room

Earlier today, Carole Larkin published an interesting article -- How the Loss of Memory Works in Alzheimer’s Disease, and How Understanding This Could Help You.


The article described in layman's terms how problems with short term memory are directly related to the region of the brain known as the hippocampus; and, how when this brain region stops functioning properly a person losses their ability to store information.

A person suffering from Alzheimer's disease can hear you and even respond to you. What they can't do is remember what the hell you just said. Well, in layman's terms anyway.

I grappled with this problem several years ago as I was constructing my own understanding of how Dotty was thinking (or not thinking) and feeling. I named the parallel universe that Dotty lives in -- Alzheimer's World.

To continue reading go here -- Learning How to Communicate with Someone Suffering From Alzheimer's Disease

Thursday, April 7, 2011

Is Governor Scott Really Without Shame? Is Florida Really Without Pride?


Is Governor Scott Really Without Shame? Is Florida Really Without Pride?

by Tallahassee Autism Support Coalition, Inc. on Wednesday, April 6, 2011 at 9:13pm

Dear Editor:

My name is Jarl K. Jackson, a person with Asperger's Syndrome, an autism spectrum disorder and the founder, president and chair of the Tallahassee Autism Support Coalition, Inc. As such - as an autism self-advocate - I was down at the Capitol on Wednesday, April 6, 2011 for the 'Rally in Tally.' This event was inspired by the "emergency cuts" made by our esteemed Governor, Rick Scott to the Medicaid Home & Consumer Based ServicesWaiver Program. 

The Home and Community Based Services Waiver is program that provides community services to individuals as an alternative to services provided in an institution. This allows recipients to live as independently as possible and gives them the opportunity to be as much fully-contributing citizens as possible in all areas of life, including gaiful employment.   

Instead, reciepients now appear headed for a re-institutionalization which will profit a few businesses and cost the state far more than what the current program does. Thus, it will  further hurt the most vulnerable in Florida, including its economy.   

As many of you no doubt recall, when,in the past, cuts have had to be made in the current budget, the legislature has held a special session. They have done so because that is the constitutional way to do so.Now, in addition to cuts already being debated by the legislature for the upcoming fiscal year, Governor Scott has unilaterally made so-called "emergency cuts"    

Inspired - or driven - by this act of the Governor, the 'Rally in Tally' was born. This near-spontaneous event was made up of many, many self- and parent advocates and headed up (no doubt among others) by the Autism Society of Florida and WaiverInfo.org. In any case, Ven Sequenzia and Aaron Nangle, who head up those two organizations, were very much in the lead - but I don't want to deny credit to the many, many other self-, parent and provider advocates, who are all leaders in their own right!  

I was proud to stand with them and furious at the way all of us were treated. After the rally, many of us went to the Governor's office, asking for the chance to speak to a senior staff member about our concerns. Held up for hours, we were finally told that Mr. Sequenzia and Mr. Nangle would be allowed to speak with to an assistant to the Governor's press secretary, or some such person - but then they (and we) were made to wait even longer for that! We didn't expect to see the Governor; he was out of town. But to simply be treated with respect and acknowledged... how much does that cost the state?  

The substance of that meeting, such as it was, was lacking. Nothing promised but talk, while cuts go into effect, waiver reciepients lose jobs and independence, their service providers lose funding and have to lay off employees - this from a governor who promised to create jobs - and individuals and families face new and greater hardships, while friends and communities struggle to help out.  
Do not think that the providers were making out well before. Many are not-for-profit, earn already low-wage-an-hour incomes. They are dedicated people, who truly love their work and care deeply for their clients. However, if you are struggling to survive yourself, how are you supposed to help another do so? And for many waiver reciepients, it is the difference between surviving and not surviving. The cuts are like a measure of the value of human lives!  

If the governor's staffers could offer little in the way of substance, what did have substance was the resolve of self, parent and provider advocates to continue the fight. And that is where you come in. We are asking you, our fellow citizens of Florida, to first become informed about this issue. Then, we ask you to get more involved in looking out for and supporting your neighbors and fellow community members, especially the most vulnerable and particularly the many, many individuals and families living with all varieties of disabilitie. This would include not only those receiving support through the now-reduced Waiver, but also those who have been on the waiting list to receive such services, often for years and those who were never eligible - such as myself.

What services even people like me get are also being cut and reduced. Our waiting list consists of how long we wait to be served, to be acknowledged. Our cuts are in what little helps to keeps us going just where and how we are, like the wonderful people who run the Centers for Autism and Related Disabilities (CARD) throughout the state. 

There are many such people working in government and in the communities throughout that state. There are many more wonderful people out there as well. You know who you are. Why not join us?   

If you are interested, or just simply want more information, feel free to contact me at the following:

Jarl K. Jackson 
110 North Adams Street
(850) 412-0141
Tallahassee, Florida 32301 are also on Facebook. Search: Tallahassee Autism Support Coalition, Inc.


I will do everything I can to answer your questions and respond to your comments. And if I can't help you, I will refer you to someone who can - not simply brush you off like myself and others have been!

Again, join with us! We do not ask to held, carried, or borne along, only respected, appreciated and allowed the chance to flourish! 

Isn't that the American Dream? We are all Americans, let us all dream big. Let us dream and make it so!




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Disabled lose care statewide thanks to spending cuts | FLORIDA TODAY | floridatoday.com

Disabled lose care statewide thanks to spending cuts FLORIDA TODAY floridatoday.com Join our listserv, and visit us on Facebook (adaexpertise). Send us a message, at mdubin@pobox.com.