I invite and encourage you to read today's blog about the DC Forum, the bills the Alz. Association is supporting, and how you can help. Please post comments here.
I've been waiting for Joan to post about her experiences in DC, because I knew she'd do a great job of summing it up. I went over for the day on Tuesday with a member of our local Alz Assn Chapter, and we visited several members of Congress' offices. The best visit we had was with Senator Barbara Mikulski. Senator Mikulski is the originator of the Alzheimer's Breakthrough Act, which Joan described in the blog. Her Dad had AD, she saw what it did to her family, and particularly her Mom, who was the primary caregiver. She is the main AD champion in Congress.
Three years ago, I testified at a Senate Subcommittee Hearing for the Act. I'd been following its progress since on the Internet, and I knew that it had not passed yet, but work was still being done to pass it. Well, on Tuesday we found out what the problem is. The Act had been passed by the House several years ago, but was rejected by the Senate because of ONE Senator from Oklahoma, named Coburn. Apparently, Senator Coburn rejects any bill that directs money towards a specific disease--it doesn't matter what the disease is nor how desperate the need. We were told that the only thing that will help is to get more cosponsors in the Senate for the bill. I WOULD URGE EVERYONE WHO READS THIS TO WRITE TO THEIR SENATOR, TELL YOUR STORY, AND ASK HIM/HER TO BECOME A COSPONSOR WITH SENATOR MIKULSKI OF THE ALZHEIMER'S BREAKTHROUGH ACT.
There is also a seperate bill that is in the works that includes a $3,000 a year tax credit for caregiving. It is not disease-specific, so hopefully it won't run into the same roadblock with Senator Coburn.
As Joan said, it is a great experience to be involved in, but quite tiring. I was up with the chickens that day, getting my husband ready for daycare, dropping him off, and then went to the Alz Assn office to meet the staff member for the drive over. Once we were there, it was go-go-go. Then the same as the a.m. in reverse! But it was worth it and I hope to do it again.
Thanks for that info, Marilyn. It's always good to know WHY a particular bill did not pass. Thank you and all the others for your input and energy to try to get things moving on capitol hill!
marilyninMD, the first $3,000 Caregiver bill was introduced by Hilliary Clinton in 2007, this is how long they have been trying to get it passed. it is now being introduced as the Alzheimer Family Assistant Act in 2009. Hopefully they are close to getting this one to pass. Here are the guidelines as they exist in the present form, however if it ever gets passed some of the description in the rules may also change.
Caregiver Assistance and Relief Effort (CARE) Act Reintroduced
Senator Bob Menendez (D-NJ) and Representative Eddie Bernice Johnson (D-TX) recently reintroduced his legislation from 2007, the Caregiver Assistance and Relief Effort (CARE) Act (S 2958/ H.R. 1192). The bill would provide a tax credit to those caring for a family member with long-term care needs; the credit would start at $2,500 in 2010, with a reduction of $100 for every $1,000 the taxpayer earns over $75,000. The credit would increase to $2,750 in 2011 and $3,000 in 2012. In addition, the bill would increase funding for the National Family Caregiver Support Program (NFCSP) to $250 million in FY 2011, up from $154 million in FY 2010. It would also allow a tax deduction for long-term care insurance premiums and apply certain consumer protection provisions to long-term care insurance contracts.
APPLICABLE INDIVIDUAL-
`(A) IN GENERAL- The term `applicable individual' means, with respect to any taxable year, any individual who has been certified, before the due date for filing the return of tax for the taxable year (without extensions), by a physician (as defined in section 1861(r)(1) of the Social Security Act) as being an individual with long-term care needs described in subparagraph (B) for a period--
`(i) which is at least 120 consecutive days, and
`(ii) a portion of which occurs within the taxable year.
Such term shall not include any individual otherwise meeting the requirements of the preceding sentence unless within the 39 1/2 month period ending on such due date (or such other period as the Secretary prescribes) a physician (as so defined) has certified that such individual meets such requirements.
`(B) INDIVIDUALS WITH LONG-TERM CARE NEEDS- An individual is described in this subparagraph if the individual meets any of the following requirements:
`(i) The individual is at least 18 years of age and--
`(I) is unable to perform (without substantial assistance from another individual) at least 3 activities of daily living (as defined in section 7702B(c)(2)(B)) due to a loss of functional capacity, or
`(II) requires substantial supervision to protect such individual from threats to health and safety due to severe cognitive impairment and is unable to perform at least 1 activity of daily living (as so defined) or to the extent provided in regulations prescribed by the Secretary (in consultation with the Secretary of Health and Human Services), is unable to engage in age appropriate activities.
Hope this helps, at least it gives us something to look forward to on this long journey.
More information for you - the ADD-CAP "not yet a bill" that I wrote about in the blog, desperately needs co-sponsors. Please read about this initiative in my blog, and write to your representatives and senators urging their sponsorship. It speaks directly to early detection, early onset, and co-ordinated care.
Jane--thanks for posting the details on the caregiver bill. It is interesting that no diseases are mentioned by name, but clearly would benefit dementia caregivers by the description given. I'm wondering if this proposed legislation also ran into a roadblock with Sen. Coburn and had to be reworded.