Community Choice Act (CCA) is the mos...

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Community Choice Act (CCA) is the most important health care reform bill for people with disabilities and seniors. Simply put, it will give people with disabilities and seniors in nursing homes and other institutions, or folks who are at risk of such placement, the choice to live at home with the services and supports that they need to stay in their communities independently.

Become an initial Community Choice Act co-sponsor! Write to your Senators and Representatives in the House:

If you don't know who your senator or representative is, click here

Dear [recipient name inserted here],

I am contacting you today to ask that you take action on a critical issue:

The institutional bias of long term care.

I am sure you are aware that seniors and people with disabilities Overwhelmingly prefer to live in the community with supports rather than Receive assistance in a nursing facility or other institution.

Unfortunately, the current system does not give people a choice and often requires that people go into a nursing facility or other institution to get the assistance they need. In fact the vast majority of our Medicaid Funding for long term care is earmarked for expensive institutional settings, rather than supporting people at home in the community.

The Community Choice Act (S799 in the 110th Congress) changes this by establishing a national program of community-based attendant services and supports for people with disabilities, regardless of age or disability.

This bill would allow the dollars to follow the person, and allow eligible Individuals, or their representatives, to choose where they would receive services and supports. Any individual who is entitled to nursing home or other institutional services will now be able to choose where and how these services are provided.

This legislation is supported by every national organization representing

people with disabilities.

Your support of the Community Choice Act is extremely important. This

legislation is about individual choice and allows an individual to choose

to receive care in the community, rather than be forced into an institutional setting. Please give seniors and people with disabilities a Real choice in long term care.

Sincerely,

Name

DC Advocacy Days 2 and 3

DC Advocacy Days 2 and 3

So Tuesday was kind of preparation for The Hill. First, we attended a meeting about what to expect. I could tell from the talk that, as I expected, DC Advocacy was going to be big and impressive. After the prep meeting, there was another seminar on recent advances in research. Of course, the topic of stem cells came up. As I suspected, stem-cell research is our biggest hope for a cure and/or better treatments.

On Tuesday evening, we attended an awards presentation at the historic Carnegie Library. There was also a reception with a baseball-park theme. Each section of the buffet was divided into regions, and typical ballpark food was displayed, including regional specialties. So, among the hotdogs and French fries, were pizza for New York, cheesesteak sandwiches for Philadelphia, and nachos and fried churros for San Diego, and clam chowder for Boston. And hostesses passed through with baskets full of bags of Cracker Jacks, and Baby Ruth candy bars. It was a lot of fun.

Wednesday morning we woke up at 5:00am, for the day on The Hill. After breakfast at the host hotel, the Renaissance, we boarded buses for the buildings where the senators and Representatives have their offices.

There was a lot of walking, or rolling in my case, from one building to another. Our first stop was the Cannon Building to meer Carolyn McCarthy from the Fourth Congressional District on Long Island. Even though I do not live in her district, my family does, and of course, her district is where I am from. McCarthy’s rise to Congress was out of a tragic story, one that was a big part of our history here.

On December 7, 1993, as a Long Island Railroad train full of commuters from Manhattan, pulled into the Merillon Avenue station in Garden City, a crazed gunman by the name of Colin Ferguson opened fire in one of the cars. Two of his 25 victims were Dennis McCarthy and his son Kevin. Dennis was killed, along with five others; Kevin was one of 19 injured. As a result of her husband’s murder and son’s severe injuries, Carolyn, then a nurse, became an activist for gun control. Thereafter, she ran for Congress, and there she still sits.

She greeted us very enthusiastically, and listened to our presentation, including my story that I had pre-typed and saved in my Mercury speaking device. We took pictures, which she promised to send us. I told her what an inspiration she has been, and she told me how inspired she was by my presence in her office. As a followup, I contributed an entry on Metroblog NYC called “Carolyn McCarthy Rocks!” and somehow it came to the attention of Peter Kay, her Legislative Assistant, and he e-mailed to thank me. He said McCarthy was “tickled” to read my article!

Then, we were off to see Anthony Weiner, the Representative from my, and Louise’s district. Weiner is one of the sponsors of the ALS Registry Bill, which he quickly reminded us of while he whizzed by in the hall. We got to do our presentation to Weiner’s aide, and also to the aides of Hillary Clinton and Chuck Schumer, our two senators.

We were pretty exhausted by the time we arrived at Union Station for our 7:10 train.
Ellita and I had some dinner, and we boarded the train with Jody and Maria. We had an Access-a-Ride pickup scheduled for 10:21 at Penn Station – well in line with our scheduled arrival of 9:45. Well, as luck would have it, our train met with a mishap; sometime after Philadelphia, we smelled a fire. Some debris on the tracks caught fire and our train was badly delayed. We then knew we were going to lose Access-a-ride! So Jody used her power of “ big mouth” and requested that they send another van. Of course they wouldn’t confirm it to us. Long story short: I got to Penn Station, sent Ellita home in a taxi, while Jody and Maria Castronovo waited with me until Lynette arrived from my house in a taxi. I had no idea that taxis had gotten so expensive! Just ten years ago, I took taxis from Manhattan to Queens for under $20 and now they are more than $40!! Lynette arrived at Penn at 11:45, and we received a confirmed time for Access-a-Ride pickup of 1:00am. They arrived at 1:15, home at 1:45, to bed at 2:15am. I don’t think I need to say how exhausted I was the next day, but it was all worth it, and I can’t wait to do it again.

NEXT UP: Fern’s Fighters, Talking Machine battles, etc.