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gbrown

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To All:
Please find below an email I sent to Coleen Maguire yesterday. The reply she sent me is very informative. For all you Okies, please let this senator know not to keep blocking the ALS National Register.

If any of you are interested in the links she refers to, email me off line at [email protected] and I will pass them along.
Gordon

P.S.
Thanks, Al for reminding me about the copy/paste option.


Hi Mr. Brown, thank you so much for your email. Caregiving—both family and paid—is one of the biggest needs our families (any family caring for an ailing loved one) face. We struggle with trying to provide as much support as we can in that area. Just to let you know, the Chapter has a respite care grant available for PALS. We were recently able to increase the amount of the grant—right now the Chapter can provide $1,500 per year in reimbursement for respite care. We absolutely know this is just a drop in the bucket and doesn’t cover nearly as much as we would like. I’ve attached information about the grant should you wish to use it in the future. The program is designed to reimburse you for the cost of bringing in a paid caregiver—we can reimburse you for the $1,500 all at once or it can be done in increments, whichever is most convenient for you. And the year begins when you first receive the grant, so if you wanted to use the grant this month, then you would be eligible for $1,500 again in July 2009. Don’t hesitate to let me or Kathleen know if you have any questions. Also, the Commonwealth of Virginia usually has a respite care grant each year for $500. If the funding has been allocated, they start accepting applications in February each year. It is closed for this year but I always have something about that in the monthly mailing towards the end of the year if it is being offered so that might be an additional option for you.



With regard to Advocacy efforts for respite care, there are a couple of issues we have been working on very aggressively. I forwarded your email on to Pat Wildman who is our Federal Outreach Director in our Advocacy Office. He is much more well versed in all the details of the bills we are looking to get passed. I asked him to get back with you as well so he can give you all sorts of detailed information that I might not be able to give you. And in case you would like to make contact with him, his email address is [email protected].



As you mentioned, there is a bill in the House right now (HR 5454) that will make ALS a “service connected” disability. This allows vets with ALS access to a whole host of extra benefits which include home care. Your congressman Virgil Goode has already signed on as a co-sponsor of the bill and there are 43 other co-sponsors of the bill. Congressman Goode has always been extremely supportive of our ALS advocacy efforts, so has Senator John Warner. Right now, it looks like Mr. Goode is the only congressman in Virginia who has signed on. There is not a companion bill in the Senate yet that proposes the same legislation. You can urge your fellow Virginians and others on the ALS forums to contact their congressman to support this bill.



In 2006 Congress passed the Lifespan Respite Care Act which would allow for federal funds for states to use for respite care grants. Of course that is contingent upon funds being allocated for that each year and given the economy of late, I’m sure there haven’t been a lot of funds available. It was definitely a great start and hopefully Congress will continue to



One of our other big advocacy issues is trying to get the ALS Registry passed. This would allow the CDC to put a comprehensive registry together to learn exactly how many people have ALS in this country, where they live, and start to collect data on the background of PALS to hopefully look for links between people with ALS and common environmental exposures. This really is a key to helping us understand so much more about ALS and causality. Unfortunately one senator (Coburn from Oklahoma) is literally holding the bill hostage and not letting it come to the floor for a vote. The bill passed the House 411-3 and there are over 75 senators who have sponsored the bill so it would easily pass a vote if it could just be brought to the floor. Senator Coburn takes great satisfaction in holding up many bills that he disagrees with and we have tried just about everything we can to get him to release his hold on this bill. If you have any friends in Oklahoma, set them to work on him!



I don’t know if you might be aware, but our advocacy department has a website that has a lot of information on the latest bills and such that the ALS community is working to get passed. That website is http://capwiz.com/alsa/home/.



I wish I could have provided you with a more satisfying solution to caregiving issues that all of our PALS face, but I hope at least some of it was helpful! Please don’t hesitate to let me know if there is anything else I can assist with.



Warmest regards,
Colleen

Colleen Maguire, Director of Patient Services
ALS Association – DC/MD/VA Chapter
(301) 978-9855 | 1-866-FITE ALS Ext. 203
Fax: (301) 978-9854
[email protected]
www.ALSinfo.org

~ Proudly Serving the ALS Community for Over 15 Years ~
Headquarters: 7507 Standish Place, Rockville, MD 20855

The Walk to Defeat ALS™ is The ALS Association’s national signature event. By participating in our local Walks, both walkers and donors directly impact the lives of those affected by ALS. For more information or to register for the Walk visit www.ALSinfo.org


--------------------------------------------------------------------------------

From: Gordon Brown [mailto:[email protected]]
Sent: Wednesday, July 09, 2008 12:59 PM
To: Colleen Maguire
Cc: Kathleen Kelly
Subject: Caregiver Assistance



Hi Colleen and Kathleen:

I go to the ALS Forums everyday and read and correspond with other PALS and CALS. I have scanned other ALS forum sites but this one is the best I've found. Today a thread was begun about the costs concerned with keeping PALS at home and why we can't get any assistance. One participant stated that she had to try and work three days a week to make ends meet and try and keep insurance for herself. Her husband who is the PALS needs full time care but she can't afford it without assistance. Another CALS stated that her husband had been approved for SSD but during the five month wait they would have no income to pay bills and it would wip[e their small savings out.

As you know, my wife works full time and comes home at lunchtime to take care of me. At some point in time she will have to quit and stay home full time and we will be in the same boat. You already know that a lot of 1991 Gulf War Veterans are contracting ALS. I red today the the DOD is petioning the Secretary of Defense to place these veterans on Permanent Disability Retired List in order to expidite their access to VA benefits and services, including funds for in-home nursing care. This great and I hope that it goes through. But, what about the rest of the ALS population? My wife will never let me be put in a nursing home, as well as many others. And, it is a fact that patients with home care get better attention and are more satisfied and comfortable at home. Plus, it saves the government tons of money by not having to pay for nursing home care.

What can we as tax paying citizens do convince the Congress to get off their rumps and pass legislation to compensate CALS for staying home and taking care of their loved ones?

Thanks,

Gordon Brown



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fiddleplayer51

Distinguished member
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Messages
337
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03/2008
Country
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VA
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Harrisonburg
Thanks so much, Gordon, for emailing Kathleen and Colleen and posting your correspondence. Colleen's reply is so informative.
Every time I see mention of the hold Sen. Coburn has on the ALS Registry Act it makes me want to spit! And he's a physician! What about the Hippocratic Oath: "...I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone....In every house where I come I will enter only for the good of my patients, keeping myself far from all intentional ill-doing".
You're a great advocate and your efforts are greatly appreciated. Your email to Kathleen and Colleen was concise and to the point.
Thanks again and take care,
Jane
 

gimpydad'slady

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Georgia
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Lula
Mr Brown,

Thank you so much for sharing that information. I am a caregiver and wife of a 1991 Gulf War Veteran, and am also a Veteran. We have been in the process of trying to find out if he qualifies for service connected disablity & aid and attendance, going on 5 months now. It is a very frustrating process. I was able to grab some info from what you posted, research, and print for my meeting tomorrow with the Paralized Veterans Association in the afternoon on my husbands behalf. Working with the VA has done nothing thus far except one appointment, to verify his disabilty, and provide us with computer generated letters stating they are still "working" on the file.

With that said, I am also currently working with others that are helping me get some assistance from our congressman and senators. The ALS of Michigan Chapter has some wonderful people affliated with them, and have been a great aid in assisting me with getting in contact with people that can make things happen. The next step is PVA of Michigan, then the senators...wish us luck! :)

Thanks again for the info!

God Bless!
 

Al

Moderator emeritus
Joined
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Country
CA
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On
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Hi gimpydad'slady. Have you been in touch with Zenarcher aka Jeff, on our site. He is an advocate for Veteran rights and may be able to help.
AL.
 

kelly

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ny
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saratoga springs
This is such useful information. I fear everytime I leave my husband home for anymore than an hour. I try to have him situated safely. I know that the time is near that I will not be able to leave him home alone at all. Interested to learn more. KR
 

gimpydad'slady

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Messages
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Evening Al

No I have not, that is good to know. I'll have to look him up and get some more updates. Thanks for the tip!:-D
 
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