The Social Security Administration (SSA) has added early-onset/younger onset Alzheimer's to the list of conditions under its Compassionate Allowance Initiative, giving those with the disease expedited access to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).
http://www.alz.org/living_with_alzheimers_social_security_disability.asp
Thursday, February 11, 2010
The CLASS Act (Community Living Assistance Services and Supports)
Article from the February 10 St. Paul Pioneer Press, authored by Ecumen CEO Kathryn Roberts and Alzheimer's Association Executive Director Mary Birchard.
Monday, August 3, 2009
Social Security Compassionate Allowance Initiative
What is the Social Security Compassionate Allowance Initiative?
The Compassionate Allowance Initiative recognizes certain medical conditions and diseases that are life-threatening and/or prevent individuals from working for at least 12 months. Persons diagnosed with an illness that qualifies for a Compassionate Allowance can apply to receive disability benefits more quickly.
Recently, the Social Security Commissioner has held a series of hearings to determine if certain conditions should qualify for Compassionate Allowances. Previous hearings focused on rare diseases, cancers, and traumatic brain injury (TBI) and stroke. On July 29 in Chicago, a hearing was held to discuss younger-onset Alzheimer’s. Persons diagnosed with younger-onset Alzheimer’s often face many challenges when applying for Social Security disability benefits, at a time when they are no longer able to work as they might have planned. Adding younger-onset Alzheimer’s or other dementia to the Compassionate Allowance Initiative list will decrease wait time for benefits and greatly help people access the benefits they need.
Below is a link to a video of the hearing, at which Alzheimer's Association staff and volunteers provided testimony and discussion. We’ll also have a blog post later in the week from one of our own Minnesota volunteers who attended in person!
mms://v2.webcasting.com/archives/drakehotel/07.29.2009drakehotel-ssa.wmv
The Compassionate Allowance Initiative recognizes certain medical conditions and diseases that are life-threatening and/or prevent individuals from working for at least 12 months. Persons diagnosed with an illness that qualifies for a Compassionate Allowance can apply to receive disability benefits more quickly.
Recently, the Social Security Commissioner has held a series of hearings to determine if certain conditions should qualify for Compassionate Allowances. Previous hearings focused on rare diseases, cancers, and traumatic brain injury (TBI) and stroke. On July 29 in Chicago, a hearing was held to discuss younger-onset Alzheimer’s. Persons diagnosed with younger-onset Alzheimer’s often face many challenges when applying for Social Security disability benefits, at a time when they are no longer able to work as they might have planned. Adding younger-onset Alzheimer’s or other dementia to the Compassionate Allowance Initiative list will decrease wait time for benefits and greatly help people access the benefits they need.
Below is a link to a video of the hearing, at which Alzheimer's Association staff and volunteers provided testimony and discussion. We’ll also have a blog post later in the week from one of our own Minnesota volunteers who attended in person!
mms://v2.webcasting.com/archives/drakehotel/07.29.2009drakehotel-ssa.wmv
Tuesday, June 23, 2009
Ending the Waiting Period for Medicare
There are more than five million Americans living with Alzheimer's disease, and up to a half million of these individuals are under age 65 and have younger-onset Alzheimer's or a related dementia. After working full-time and paying into Medicare like all other employed Americans, many of these people lose their jobs before retirement due to the progression of their disease, and no job means no employer-based health coverage. As these folks grapple with the challenges an Alzheimer diagnosis brings to their lives, they must also apply and wait for disability coverage when the illness makes it impossible for them to work. Many people wait years to receive disability coverage. Once disability is secured, people with younger-onset dementia also discover that federal law requires them to wait two additional years after their disability determination to become eligible for Medicare benefits. This is often two years without health insurance when these folks need it most.
I have had the great pleasure of knowing many talented and vibrant people under age 65 with Alzheimer’s disease, many of whom lost their jobs, had difficulty securing disability, and went without medical coverage for years. One example is Kris. Kris was a 55-year-old marketing executive for the convention bureau of a large metropolitan city at the top of her career when she was fired from her job because of her Alzheimer’s disease. She applied for disability and was turned down twice before being accepted into the program. This process took nearly two years. Kris then had to wait another two years before she could qualify for Medicare. She was without medical insurance for four years--four years when she was trying to slow the progress of her disease. This is clearly wrong, and it has to stop. We pay into disability and Medicare so that if we become disabled--if we get Alzheimer’s and can’t work--we will have a means of support and health insurance. Now is our opportunity to help our friends and family members with younger-onset Alzheimer’s receive the benefits they’ve earned.
I urge you to contact members of Congress and tell them to cosponsor the Ending the Medicare Disability Waiting Period Act of 2009 (S. 700 and H.R. 1708). I applaud the action of Minnesota Representatives Betty McCollum, John Kline and Collin Peterson, who have already signed on to co-sponsor this important legislation, and I encourage you to call or e-mail other policy makers to request their support. Phasing out the waiting period for Medicare benefits for people disabled by Alzheimer's disease would reduce the problem of lack of health insurance and high out-of-pocket expenditures for this vulnerable population. It would ensure access to critical health care services that can help to manage the disease and help to maintain independence. (You can read the text of S. 700 at this link--http://www.govtrack.us/congress/bill.xpd?bill=s111-700--and the text of H.R. 1708 at this link--http://www.govtrack.us/congress/bill.xpd?bill=h111-1708.)
Alzheimer's disease poses tremendous burdens on individuals and families, burdens made worse by lack of healthcare coverage. The Alzheimer's Association is grateful for the leadership of Sen. Jeff Bingaman of New Mexico and Rep. Gene Green of Texas, and we urge bipartisan support and swift enactment of this important legislation that provides invaluable health coverage and peace of mind for those with Alzheimer's and other disabling, fatal diseases.
--Michelle Barclay is the Vice President of Program Services at the Alzheimer's Association Minnesota - North Dakota.
I have had the great pleasure of knowing many talented and vibrant people under age 65 with Alzheimer’s disease, many of whom lost their jobs, had difficulty securing disability, and went without medical coverage for years. One example is Kris. Kris was a 55-year-old marketing executive for the convention bureau of a large metropolitan city at the top of her career when she was fired from her job because of her Alzheimer’s disease. She applied for disability and was turned down twice before being accepted into the program. This process took nearly two years. Kris then had to wait another two years before she could qualify for Medicare. She was without medical insurance for four years--four years when she was trying to slow the progress of her disease. This is clearly wrong, and it has to stop. We pay into disability and Medicare so that if we become disabled--if we get Alzheimer’s and can’t work--we will have a means of support and health insurance. Now is our opportunity to help our friends and family members with younger-onset Alzheimer’s receive the benefits they’ve earned.
I urge you to contact members of Congress and tell them to cosponsor the Ending the Medicare Disability Waiting Period Act of 2009 (S. 700 and H.R. 1708). I applaud the action of Minnesota Representatives Betty McCollum, John Kline and Collin Peterson, who have already signed on to co-sponsor this important legislation, and I encourage you to call or e-mail other policy makers to request their support. Phasing out the waiting period for Medicare benefits for people disabled by Alzheimer's disease would reduce the problem of lack of health insurance and high out-of-pocket expenditures for this vulnerable population. It would ensure access to critical health care services that can help to manage the disease and help to maintain independence. (You can read the text of S. 700 at this link--http://www.govtrack.us/congress/bill.xpd?bill=s111-700--and the text of H.R. 1708 at this link--http://www.govtrack.us/congress/bill.xpd?bill=h111-1708.)
Alzheimer's disease poses tremendous burdens on individuals and families, burdens made worse by lack of healthcare coverage. The Alzheimer's Association is grateful for the leadership of Sen. Jeff Bingaman of New Mexico and Rep. Gene Green of Texas, and we urge bipartisan support and swift enactment of this important legislation that provides invaluable health coverage and peace of mind for those with Alzheimer's and other disabling, fatal diseases.
--Michelle Barclay is the Vice President of Program Services at the Alzheimer's Association Minnesota - North Dakota.
Friday, June 5, 2009
Celebrating in North Dakota
Hello from ND! I think it is great that we've started this blog - what a fabulous way for us to connect and share with each other! The successes we have seen in the public policy arena this year are phenomenal and something we should definitely not keep to ourselves.
Our big success in ND was the passage of HB 1043 for Dementia Services. (Read it here: http://www.legis.nd.gov/assembly/61-2009/bill-text/JAHF0300.pdf). The bill will establish a statewide dementia care consultation and community education program, both of which are severely needed, especially in the more rural areas of the state (which is pretty much all of it). I know that everyone who took part in getting this bill passed learned a great deal along the way. We learned that ND government has interesting idiosyncrasies. We also learned that support for this bill was nearly unanimous in both chambers of the legislature and among both parties, Republican and Democrat alike. Alzheimer's disease knows no party lines, demographics, or socioeconomic status. What I learned most, and what I think is vitally important for all of us to remember is something that Margaret Mead said many years ago: "Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has."
So what's next for the ND legislation? The Dept of Human Services will release a Request for Proposals (RFP), probably within the next month, and the Alzheimer's Association will submit a proposal outlining our ideas on the implementation of the program. Cross your fingers that we are granted the contract to fulfill the requirements of the bill!
--Krista Headland is the Alzheimer's Association Regional Center Director for Western North Dakota.
Our big success in ND was the passage of HB 1043 for Dementia Services. (Read it here: http://www.legis.nd.gov/assembly/61-2009/bill-text/JAHF0300.pdf). The bill will establish a statewide dementia care consultation and community education program, both of which are severely needed, especially in the more rural areas of the state (which is pretty much all of it). I know that everyone who took part in getting this bill passed learned a great deal along the way. We learned that ND government has interesting idiosyncrasies. We also learned that support for this bill was nearly unanimous in both chambers of the legislature and among both parties, Republican and Democrat alike. Alzheimer's disease knows no party lines, demographics, or socioeconomic status. What I learned most, and what I think is vitally important for all of us to remember is something that Margaret Mead said many years ago: "Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has."
So what's next for the ND legislation? The Dept of Human Services will release a Request for Proposals (RFP), probably within the next month, and the Alzheimer's Association will submit a proposal outlining our ideas on the implementation of the program. Cross your fingers that we are granted the contract to fulfill the requirements of the bill!
--Krista Headland is the Alzheimer's Association Regional Center Director for Western North Dakota.
Tuesday, May 26, 2009
Moving Forward in Minnesota
Greetings from Blogworld!
Well, it has been a whirlwind spring for us in both the MN and ND legislatures. I think it’s safe to say that our chapter has never before seen this kind of legislative progress being made in both states at the same time. It’s been very gratifying for us to see the hard work of our staff and our volunteer advocates being rewarded with legislation that’s going to do so much for families and communities living with Alzheimer’s.
In Minnesota, House File 1760 passed just last week and was signed by Governor Pawlenty on Friday. This is an omnibus bill that covers a lot of health care-related ground. You can go here (https://www.revisor.leg.state.mn.us/bin/bldbill.php?bill=ccrhf1760A.html&session=ls86) to read the whole thing; the section that belongs to us is section 110 (way down at the bottom). Here’s what it proposes: the Minnesota Board on Aging (http://www.mnaging.org) will convene a working group of about 13-20 people to spend 18 months studying Alzheimer’s disease in Minnesota. The group will include representatives from facility industries such as nursing homes and assisted livings, community-based services such as adult day providers, the medical provider community, the research community, the Alzheimer’s Association and the state of Minnesota, as well as persons with Alzheimer’s and primary caregivers. The charge on the working group is to “examine the array of needs of individuals diagnosed with Alzheimer’s disease, services available to meet these needs, and the capacity of the state and current providers to meet these and future needs.” As I understand it, this is basically a state-level version of what the national Alzheimer’s Study Group did for the last two years before their testimony in front of Congress in March. (You can watch the testimony yourself here: http://aging.senate.gov/hearing_detail.cfm?id=310462&. About twenty of our advocates had the opportunity to attend the hearing in person in Washington, D.C., and they said it was a really moving experience.) When the working group is done with this comprehensive study, they will bring their findings back to the state and make recommendations on policy and legislative actions that they believe should be taken.
I’m really interested to hear about what the group finds. I didn’t know much about Alzheimer’s when I came to work at the Association in 2007; no one in my family has ever had it, and it’s not a disease that gets a lot of popular attention. I’m sure there are many reasons for that, but I think it can only be a good thing to shine a spotlight on Alzheimer’s and on what people with the disease, their caregivers, their friends and their communities are living with every day. Nobody should have to feel like they are alone in their struggle against this disease, and I believe this working group demonstrates the commitment that Minnesotans have toward supporting each other. I’m always so proud when I tell people that I work for the Alzheimer’s Association—I’m proud of the education and support we give to families and professionals, I’m proud of the events we produce that raise money and awareness, and I’m really proud today of the work that’s been done in getting this bill passed. Not to mention all the other valuable legislation we’ve been part of—the Vulnerable Adult Act (https://www.revisor.leg.state.mn.us/bin/bldbill.php?bill=H0818.6.html&session=ls86), Uniform Guardianship Bills in both Minnesota and North Dakota, and the Dementia Care Services Bill in North Dakota. But those are stories to share another time!
As always, if you’ve got any questions about our advocacy work, or if you’d like to get involved yourself as an advocate, please give us a call at (952) 830-0512 or visit our Web site at http://www.alz.org/mnnd and click on “Advocacy” on the left side of the page. Thanks for reading!
--Kate Tripoli is the Administrative Assistant at the Alzheimer’s Association Minnesota – North Dakota and serves as the primary support staff for the Public Policy Committee.
Well, it has been a whirlwind spring for us in both the MN and ND legislatures. I think it’s safe to say that our chapter has never before seen this kind of legislative progress being made in both states at the same time. It’s been very gratifying for us to see the hard work of our staff and our volunteer advocates being rewarded with legislation that’s going to do so much for families and communities living with Alzheimer’s.
In Minnesota, House File 1760 passed just last week and was signed by Governor Pawlenty on Friday. This is an omnibus bill that covers a lot of health care-related ground. You can go here (https://www.revisor.leg.state.mn.us/bin/bldbill.php?bill=ccrhf1760A.html&session=ls86) to read the whole thing; the section that belongs to us is section 110 (way down at the bottom). Here’s what it proposes: the Minnesota Board on Aging (http://www.mnaging.org) will convene a working group of about 13-20 people to spend 18 months studying Alzheimer’s disease in Minnesota. The group will include representatives from facility industries such as nursing homes and assisted livings, community-based services such as adult day providers, the medical provider community, the research community, the Alzheimer’s Association and the state of Minnesota, as well as persons with Alzheimer’s and primary caregivers. The charge on the working group is to “examine the array of needs of individuals diagnosed with Alzheimer’s disease, services available to meet these needs, and the capacity of the state and current providers to meet these and future needs.” As I understand it, this is basically a state-level version of what the national Alzheimer’s Study Group did for the last two years before their testimony in front of Congress in March. (You can watch the testimony yourself here: http://aging.senate.gov/hearing_detail.cfm?id=310462&. About twenty of our advocates had the opportunity to attend the hearing in person in Washington, D.C., and they said it was a really moving experience.) When the working group is done with this comprehensive study, they will bring their findings back to the state and make recommendations on policy and legislative actions that they believe should be taken.
I’m really interested to hear about what the group finds. I didn’t know much about Alzheimer’s when I came to work at the Association in 2007; no one in my family has ever had it, and it’s not a disease that gets a lot of popular attention. I’m sure there are many reasons for that, but I think it can only be a good thing to shine a spotlight on Alzheimer’s and on what people with the disease, their caregivers, their friends and their communities are living with every day. Nobody should have to feel like they are alone in their struggle against this disease, and I believe this working group demonstrates the commitment that Minnesotans have toward supporting each other. I’m always so proud when I tell people that I work for the Alzheimer’s Association—I’m proud of the education and support we give to families and professionals, I’m proud of the events we produce that raise money and awareness, and I’m really proud today of the work that’s been done in getting this bill passed. Not to mention all the other valuable legislation we’ve been part of—the Vulnerable Adult Act (https://www.revisor.leg.state.mn.us/bin/bldbill.php?bill=H0818.6.html&session=ls86), Uniform Guardianship Bills in both Minnesota and North Dakota, and the Dementia Care Services Bill in North Dakota. But those are stories to share another time!
As always, if you’ve got any questions about our advocacy work, or if you’d like to get involved yourself as an advocate, please give us a call at (952) 830-0512 or visit our Web site at http://www.alz.org/mnnd and click on “Advocacy” on the left side of the page. Thanks for reading!
--Kate Tripoli is the Administrative Assistant at the Alzheimer’s Association Minnesota – North Dakota and serves as the primary support staff for the Public Policy Committee.
Wednesday, May 13, 2009
Welcome to our new blog!
Welcome to our blog! We hope this will be a place where you can come not only to get updated information on our advocacy and public policy work in Minnesota and North Dakota, but also to be part of the discussion. We encourage your comments here; you can also give us a call at 952-830-0512 to learn how to get involved.
In the coming weeks and months, we'll be using this blog to share stories with you of the exciting things that have been happening in the state and federal legislatures this year, particularly those things that affect people with Alzheimer's, their families and professional caregivers, and the communities that support them. We'll post some pictures from this spring's Public Policy Forum in Washington, D.C., we'll hear from our staff and volunteer advocates about their experiences, we'll walk you through the steps involved in personally contacting your local, state and federal legislators, we'll show you how to track legislation as it goes through the various committees in both Houses, and lots more.
Thanks for reading--we'll post again soon!
In the coming weeks and months, we'll be using this blog to share stories with you of the exciting things that have been happening in the state and federal legislatures this year, particularly those things that affect people with Alzheimer's, their families and professional caregivers, and the communities that support them. We'll post some pictures from this spring's Public Policy Forum in Washington, D.C., we'll hear from our staff and volunteer advocates about their experiences, we'll walk you through the steps involved in personally contacting your local, state and federal legislators, we'll show you how to track legislation as it goes through the various committees in both Houses, and lots more.
Thanks for reading--we'll post again soon!
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