Proposed Bill Would Allow Tax-Free Trusts For Those With Disabilities
By Michelle Diament
March 3, 2009
(Updated: March 3, 2009 at 1:16 PM CT)
[http://www.disabilityscoop.com/2009/03/03/savings-accounts-bill/2412/]
A bill proposed in Congress would allow tax-free savings accounts for people with disabilities much like those already in existence for those saving for college.
The bill sponsored by Sen. Robert Casey, D-Penn., and Rep. Ander Crenshaw, R-Fla., would allow trusts to be created to pay for disability related expenses such as education, housing, health care and personal support services. The funds in the trust would not count against the individual’s maximum asset amounts to qualify for Medicaid and other government programs.
Called the Achieving a Better Life Experience Act of 2009 or the ABLE Act of 2009, the bill would create accounts similar to the 529 plans that currently exist to save for college. Up to $500,000 could be invested in the accounts, which would be tax-free in many cases.
“Too often persons with disabilities are caught in between the cracks in our society. The ABLE Act will provide families with a savings tool that is flexible and portable. The accounts are designed to help ease difficult financial situations and provide peace of mind to the families of individuals with disabilities,” Crenshaw said.
In order to become law, the bill would need to pass both the Senate and House and be signed by the president.
Wednesday, March 4, 2009
Monday, March 2, 2009
It seems appropriate that this demand for freedom is starting in Philadelphia...
Give Disabled a Home Choice
Cassie James Holdsworth and Nancy Salandra are, respectively, director of policy and advocacy and director of independent-living services for Liberty Resources
The Community Choice Act has been languishing in Washington for 15 years, despite the considerable benefits - in both lifestyle and finances - it would yield for many Americans.
The act is a piece of federal legislation that would amend the Social Security Act to give disabled and elderly people access to support services at home instead of in institutions.
Under current Medicaid policy, disabled or elderly people who require assistance with daily activities are entitled to such services only if they reside in nursing homes.
The average annual cost of a nursing-home stay in Pennsylvania is more than $67,000, and 67 percent of nursing homes in the state are funded by Medicaid.
Why can't patients live in their communities with the same funds?
Advocates have long been asking Congress to allow people at risk of being admitted to nursing homes to have the option of staying in their own homes with Medicaid dollars. Not only do the vast majority of people prefer living at home; it's also cheaper. Often, two people can be served in the community for the price of putting one person in a nursing home.
Home care can also create more jobs. And it allows people to remain productive members of their communities.
So why hasn't this legislation been approved? The chief barrier is the influential nursing-home industry, which has been entrenched in American society for more than four decades.
It's time for America to think differently about long-term care, and the Community Choice Act is a critical first step. The legislation provides a socially and fiscally responsible alternative that will enable many people with infirmities or disabilities to maintain their independence.
With the high cost of health care and the prospect of increasing numbers of baby boomers needing such services, funding community-based services seems even more prudent.
The legislation is expected to be reintroduced this spring. All but four members of Pennsylvania's congressional delegation, including both of its U.S. senators, have signed on in the past.
Given that Pennsylvania ranks 13th among the states in nursing-home population and third in state spending on nursing homes, the commonwealth stands to reap extraordinary benefits from this legislation. It should be leading the charge. Where are our champions?
Liberty Resources Inc. is a nonprofit advocacy organization that promotes independent living for people with disabilities in the Philadelphia area.
Cassie James Holdsworth and Nancy Salandra are, respectively, director of policy and advocacy and director of independent-living services for Liberty Resources
The Community Choice Act has been languishing in Washington for 15 years, despite the considerable benefits - in both lifestyle and finances - it would yield for many Americans.
The act is a piece of federal legislation that would amend the Social Security Act to give disabled and elderly people access to support services at home instead of in institutions.
Under current Medicaid policy, disabled or elderly people who require assistance with daily activities are entitled to such services only if they reside in nursing homes.
The average annual cost of a nursing-home stay in Pennsylvania is more than $67,000, and 67 percent of nursing homes in the state are funded by Medicaid.
Why can't patients live in their communities with the same funds?
Advocates have long been asking Congress to allow people at risk of being admitted to nursing homes to have the option of staying in their own homes with Medicaid dollars. Not only do the vast majority of people prefer living at home; it's also cheaper. Often, two people can be served in the community for the price of putting one person in a nursing home.
Home care can also create more jobs. And it allows people to remain productive members of their communities.
So why hasn't this legislation been approved? The chief barrier is the influential nursing-home industry, which has been entrenched in American society for more than four decades.
It's time for America to think differently about long-term care, and the Community Choice Act is a critical first step. The legislation provides a socially and fiscally responsible alternative that will enable many people with infirmities or disabilities to maintain their independence.
With the high cost of health care and the prospect of increasing numbers of baby boomers needing such services, funding community-based services seems even more prudent.
The legislation is expected to be reintroduced this spring. All but four members of Pennsylvania's congressional delegation, including both of its U.S. senators, have signed on in the past.
Given that Pennsylvania ranks 13th among the states in nursing-home population and third in state spending on nursing homes, the commonwealth stands to reap extraordinary benefits from this legislation. It should be leading the charge. Where are our champions?
Liberty Resources Inc. is a nonprofit advocacy organization that promotes independent living for people with disabilities in the Philadelphia area.
Sunday, February 22, 2009
Quick Update
The lack of posts is not indicative of all problems being solved...lol.
Actually, we've been dealing with a host of new problems, the kind that no insurance covers. It's pretty normal to have attendants rotate out of our lives. Sometimes it comes in waves, this month was one of those times. Although I was a bit panicked to find out that both of our experienced attendants would be leaving at once, Keith was quite calm. He's been dealing with this his entire life. I had already taken over the afternoon shift (2-8p) so that we could stretch our budget a bit further. I could do any of the tasks needed to keep Keith safe & comfortable. Unfortunately I am not able to get Keith into his wheelchair myself so his movement to other parts of the house and beyond was severely limited. So, my working that shift was not ideal, but at least Keith & I got to spend more time together.
We placed an ad on Craig's List and were overwhelmed with the large number of responses. Some very high quality people were excited at the possibility of working with Keith, not only to strengthen their caregiving skills, but also to learn about life from his perspective. We were able to get two new attendants hired and trained by last week. The new shift is 9a-4p which eventually me to get out of the house & be more productive financially (and maybe even work out a few times a week.) Until the new attendants are completely comfortable in the work, I need to be here for support and direction. I will continue to cover the 4-8pm shift until we can get Keith enrolled in the Medicaid Buy-in plan and (hopefully) get some of the hours covered.
While all this is going on, the project I have been incubating since April 17, 2002 has a serious funding opportunity which will bring a great (and much needed) financial windfall to our lives. Naturally, it will require a lot of my time as well. This is something I've been preparing for since 2002 and I'm fortunate to have a husband who wants me to pursue this dream to its highest level. I know that there are folks out there who don't get me or understand what I do. To them, I can only say, watch!
We'll update this blog as we can. Big news will be shared...we promise!
Actually, we've been dealing with a host of new problems, the kind that no insurance covers. It's pretty normal to have attendants rotate out of our lives. Sometimes it comes in waves, this month was one of those times. Although I was a bit panicked to find out that both of our experienced attendants would be leaving at once, Keith was quite calm. He's been dealing with this his entire life. I had already taken over the afternoon shift (2-8p) so that we could stretch our budget a bit further. I could do any of the tasks needed to keep Keith safe & comfortable. Unfortunately I am not able to get Keith into his wheelchair myself so his movement to other parts of the house and beyond was severely limited. So, my working that shift was not ideal, but at least Keith & I got to spend more time together.
We placed an ad on Craig's List and were overwhelmed with the large number of responses. Some very high quality people were excited at the possibility of working with Keith, not only to strengthen their caregiving skills, but also to learn about life from his perspective. We were able to get two new attendants hired and trained by last week. The new shift is 9a-4p which eventually me to get out of the house & be more productive financially (and maybe even work out a few times a week.) Until the new attendants are completely comfortable in the work, I need to be here for support and direction. I will continue to cover the 4-8pm shift until we can get Keith enrolled in the Medicaid Buy-in plan and (hopefully) get some of the hours covered.
While all this is going on, the project I have been incubating since April 17, 2002 has a serious funding opportunity which will bring a great (and much needed) financial windfall to our lives. Naturally, it will require a lot of my time as well. This is something I've been preparing for since 2002 and I'm fortunate to have a husband who wants me to pursue this dream to its highest level. I know that there are folks out there who don't get me or understand what I do. To them, I can only say, watch!
We'll update this blog as we can. Big news will be shared...we promise!
Thursday, January 8, 2009
Doublespeak 101
At this time Keith has a hydraulic hand-powered lift which requires someone with the upper body strength to guide Keith into his wheelchair. It's really a two-person operation since one person has to move the ventilator and the other person needs to be sure that the single lever that locks the sling in place does not come loose. This has happened twice so far, quickly dropping Keith towards the floor and if a 2nd person hadn't been there, he would have had quite a jolt.
So, we were heartened to receive an email from Michelle that she'd investigated on her end and found that there was a possibility that Keith could qualify for a motorized lift. This is a key piece of equipment because it allows Keith to get out of bed and back into his life.
I contacted our insurance-approved durable goods provider and received this response:
Are you talking about a patient lift? If so (I am ccn'g our billing specialist to get more input as well) while they may authorize the electric lift, history has shown that when we submit our claim for payment they downgrade the claim payment to a manual patient lift, and pay us based on that code despite getting the auth for a power lift. It is rather frustrating, but the reasoning is, a power lift is a convenience item for the caregiver, and not for the patient, unless the patient is using it independently, in which case that point has to be proven, by the fact that no caregivers are on staff for the patient.
Next problem is, if they ever would pay us one time, which so far they haven't that I am aware of, the allowable for a power patient lift is very low. First Medicare will only pay for that item as a rental, they cap that rental at 13 months, so for $128.48, it would take us 13 months to capture $1,670.24, and that is if the secondary insurance kicked in otherwise it is only 80 % of that amount. As you know the power lifts cost as much as $2,500 and more. There is no way we can purchase a $2,500 lift and expect to get paid $1,670 after one year of billing, if they were to pay us at all, which again they would more than likely down code the item to a manual lift.
I am sorry to say, unless our billing specialist knows something I don't, I don't think we can help you with your request, unless you have some other type of funding source willing to pay for it, such as DARS.
We heard from the billing specialist today and she confirmed that nobody has been successful in this mission in the past and there is no expectation that anyone would be successful in the future.
The most frustrating thing about this is that this piece of equipment is vital to Keith's continued recovery. One of the symptoms of Spinal Muscular Atrophy is muscular wasting. Keith always had a very active life that slowed the muscular degeneration, but after 10 months of enforced bed rest, this thin line between maintaining and losing overall health has been irrevocably erased. Unlike people without SMA, Keith cannnot rebuild muscle strength. Add to this the stress of being forced to disconnect from the meaningful engagement with the world that Keith has had his entire life and you begin to understand the importance of this piece of equipment.
The motorized lift is not a "convenience to the caregiver". It is a vital tool that allows Keith to actively participate in his life. When he gets out of bed and into his wheelchair, he reclaims his independence and his whole perspective on his role in the world. The importance of this cannot be understated and we will continue to pursue every avenue to get what we need for Keith to reclaim his life.
So, we were heartened to receive an email from Michelle that she'd investigated on her end and found that there was a possibility that Keith could qualify for a motorized lift. This is a key piece of equipment because it allows Keith to get out of bed and back into his life.
I contacted our insurance-approved durable goods provider and received this response:
Are you talking about a patient lift? If so (I am ccn'g our billing specialist to get more input as well) while they may authorize the electric lift, history has shown that when we submit our claim for payment they downgrade the claim payment to a manual patient lift, and pay us based on that code despite getting the auth for a power lift. It is rather frustrating, but the reasoning is, a power lift is a convenience item for the caregiver, and not for the patient, unless the patient is using it independently, in which case that point has to be proven, by the fact that no caregivers are on staff for the patient.
Next problem is, if they ever would pay us one time, which so far they haven't that I am aware of, the allowable for a power patient lift is very low. First Medicare will only pay for that item as a rental, they cap that rental at 13 months, so for $128.48, it would take us 13 months to capture $1,670.24, and that is if the secondary insurance kicked in otherwise it is only 80 % of that amount. As you know the power lifts cost as much as $2,500 and more. There is no way we can purchase a $2,500 lift and expect to get paid $1,670 after one year of billing, if they were to pay us at all, which again they would more than likely down code the item to a manual lift.
I am sorry to say, unless our billing specialist knows something I don't, I don't think we can help you with your request, unless you have some other type of funding source willing to pay for it, such as DARS.
We heard from the billing specialist today and she confirmed that nobody has been successful in this mission in the past and there is no expectation that anyone would be successful in the future.
The most frustrating thing about this is that this piece of equipment is vital to Keith's continued recovery. One of the symptoms of Spinal Muscular Atrophy is muscular wasting. Keith always had a very active life that slowed the muscular degeneration, but after 10 months of enforced bed rest, this thin line between maintaining and losing overall health has been irrevocably erased. Unlike people without SMA, Keith cannnot rebuild muscle strength. Add to this the stress of being forced to disconnect from the meaningful engagement with the world that Keith has had his entire life and you begin to understand the importance of this piece of equipment.
The motorized lift is not a "convenience to the caregiver". It is a vital tool that allows Keith to actively participate in his life. When he gets out of bed and into his wheelchair, he reclaims his independence and his whole perspective on his role in the world. The importance of this cannot be understated and we will continue to pursue every avenue to get what we need for Keith to reclaim his life.
Monday, January 5, 2009
The Curious Case of Keith Hogan
Just a quick note to thank all of you for sending all that good energy Keith's way. In the last couple of days he's back to being the Keith we all know and love...and we couldn't be happier to have him back! We'll keep you updated with his progress...and you keep sending those healing thoughts!Friday, January 2, 2009
Humana Cares...really!!!!
We had a meeting with an amazing woman today named Michelle Sperry who is the Field Care Manager from Humana healthcare's new division, Humana Cares. The focus of this division is to be the bridge between Humana clients and Humana programs. In other words, she is who we needed from day one of this health adventure. Now that we are on day 289, we recognize the right person when we see her! She has given us renewed hope for putting together a sustainable life plan that allows both Keith and me to live our life to the fullest.
Humana Cares Rocks!
Humana Cares Rocks!
Thursday, January 1, 2009
New Year's Update
As some of you know, Keith has had some health issues over the last month. He had an appointment with Dr. Gilbey last week which went well. The doctor confirmed that all his vital signs and test results are in the normal range so he doesn't have any urgent concern about that. He did notice that Keith's concentration was diminished, his speech is less clear and that his general response to questions was slower than it has been before. I gave him a run down of the issues I've noted over the last few weeks including lack of appetite, speaking difficulties and swallowing issues. We did mention that there has been considerable stress which is now abating. He suggested that we observe the status of Keith's physical symptoms for the next 2-3 weeks and if they are still escalating, he would then check him into the hospital for a 24 hour observation period where they could do an MRI, xrays, speech/swallow assessment and any other in-depth tests appropriate to his symptoms.
We also discussed the possibility that Keith's body is weakening due to SMA and the fact that he's been bed-bound for the last 10 months. The doctor also said that there is a greater chance that Keith will have to remain on the ventilator permanently. As Dr. Gilbey noted, Keith really has no physical reserves so he may have to come to terms with needing that support for the long term. We fully expect Keith to live for a long time to come, however it may be without some of the freedom he is used to.
Despite Keith's health setback, we are still excited about the new year and all its positive potential on every level. As always, we are deeply appreciative of your continued love, support and prayers.
Here's to a happy, healthy and prosperous new year for us all!
Love,
Ruth, Keith & Henry Hopper
We also discussed the possibility that Keith's body is weakening due to SMA and the fact that he's been bed-bound for the last 10 months. The doctor also said that there is a greater chance that Keith will have to remain on the ventilator permanently. As Dr. Gilbey noted, Keith really has no physical reserves so he may have to come to terms with needing that support for the long term. We fully expect Keith to live for a long time to come, however it may be without some of the freedom he is used to.
Despite Keith's health setback, we are still excited about the new year and all its positive potential on every level. As always, we are deeply appreciative of your continued love, support and prayers.
Here's to a happy, healthy and prosperous new year for us all!
Love,
Ruth, Keith & Henry Hopper
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