AIDSLawProject.net is a non-profit public charity incorporated in California, USA.
Our Vision Statement:
ALP.net is on the cutting-edge of leveraging Web 2.0 technologies in order to facilitate interaction between HIV+ people. It is currently using TIkiWiki software as a platform. The main feature is a series of community-generated wiki pages, AIDSLaw being the first major wiki project. Future projects will include the IMmuneSystem with information on understanding the immune system and how to strengthen it. Registered users will be able to suggest and develop other projects. Many wiki pages will also be linked to a discussion forum.Users also are able to create a personal weblog, and also join groups of bloggers. Users can choose to make their blog visible to the whole web, to just other group members, or to no one at all.
ALP.net is a non-profit corporation, so the public areas of this website are community-governed. We will be recruiting Standards Committee and Board of Directors members, and moderators (and other volunteer labor) from among the early members.
This website can be made multi-lingual (future tense, not quite yet) and so should be international. The virus knows no borders, neither does wisdom.
ALP.net will offer distance learning on various topics. The first topics are legal self-help tutorials for HIV+ people, a writer's group and a book club. We are open to suggestions for other classes.
ALP.net will also seek partnerships with brick-and-mortar AIDS Services Organizations (ASO) to offer web-based services that might not otherwise be available, or to offer new ways of connecting and interacting with their clients.
For a site map, click here.
To read the home page, click here.
Sunday, June 08, 2008
Sunday, August 05, 2007
My doctor doesn't get AIDS disability
This topic is controversial. I have fired primary care providers (several of 'em) for not understanding this stuff, which I consider to be rudimentary information. Why so drastic? Because of the role disability benefits play in my life. I am too sick to go to work for someone else, but not too sick to be working for myself several hours a week. I need my disability benefits. But I haven't had any OIs for a couple of years now. So the prevaling medical opinion would be that I am no longer disabled. The prevailing medical opinion would be wrong.
For all practical purposes, once you have an SSDI disability determination, you are totally and permanently disabled. The only factor that affects your continuing eligibility for SSDI is whether you are [b]actually[/b] working and earning more than $860 per month (SGA). That's why they used to lead with the Work report. If you're not working, your disability continues. If you are working, they check your medical eligibility.
If you do return to work, you will still draw your regular benefit for 12 months (9 TWP + 3 grace). For the next 3 years, you are eligible for your benefit for any month in which you do not earn SGA (substantial gainful activity, currently ~$860). All you have to do is let 'em know.
Furthermore, ( ;D ), during the first 5 years after you return to work, if you become too sick to work due to the same condition (HIV infection), all you have to do is submit a special application--no medical review. They used to call it Easy-on.
It works this way because your disabling condition is HIV infection. The infection must have seriously damaged your immune system, as shown by the symptoms you have, and OIs you've had. But, the OIs are not the disabling condition, the underlying HIV infection is; so recovering from an OI does not change your status to "no longer disabled." Neither does an undetectable VL and rising CD4 count, since you are still at risk of new OIs.
It is nearly a certainty that your physician either does not know this, does not get this, or does not accept this. It falls to you to insist that they get it right.
Physicians usually don't understand that there is a difference between a medical diagnosis of "disabled," and a legal determination that one is disabled and entitled to benefits. They absolutely determine the former. But their contribution to the legal determination is in making a good diagnosis, and ordering the right tests. Their opinion is sometimes considered, but it can usually be argued against if the facts support disability. Docs are given deference, but it is a far cry from the treatment they receive within their own community (clinics and hospitals). They don't get it, and they don't want to hear it.
So you have to stick up for yourself. If you aren't working, you need to be on benefits. If you are working, you don't need them any more. If your doc doesn't support this, why not? Does s/he have your best interest in mind?
It is very frustrating for me personally, because the last 5 docs I've seen got sacked (by me) for some various display of stupidity or ignorance regarding AIDS disability (which complicated my access to needed benefits), and professionally because I see the damage that is done to folks when benefits are lost.
The above applies to SSDI only. SSI has different rules on when you are disabled. LTDs vary with each particular policy.
Feel free to share your story about your doctor not understanding your needs when it comes to disability benefits.
For all practical purposes, once you have an SSDI disability determination, you are totally and permanently disabled. The only factor that affects your continuing eligibility for SSDI is whether you are [b]actually[/b] working and earning more than $860 per month (SGA). That's why they used to lead with the Work report. If you're not working, your disability continues. If you are working, they check your medical eligibility.
If you do return to work, you will still draw your regular benefit for 12 months (9 TWP + 3 grace). For the next 3 years, you are eligible for your benefit for any month in which you do not earn SGA (substantial gainful activity, currently ~$860). All you have to do is let 'em know.
Furthermore, ( ;D ), during the first 5 years after you return to work, if you become too sick to work due to the same condition (HIV infection), all you have to do is submit a special application--no medical review. They used to call it Easy-on.
It works this way because your disabling condition is HIV infection. The infection must have seriously damaged your immune system, as shown by the symptoms you have, and OIs you've had. But, the OIs are not the disabling condition, the underlying HIV infection is; so recovering from an OI does not change your status to "no longer disabled." Neither does an undetectable VL and rising CD4 count, since you are still at risk of new OIs.
It is nearly a certainty that your physician either does not know this, does not get this, or does not accept this. It falls to you to insist that they get it right.
Physicians usually don't understand that there is a difference between a medical diagnosis of "disabled," and a legal determination that one is disabled and entitled to benefits. They absolutely determine the former. But their contribution to the legal determination is in making a good diagnosis, and ordering the right tests. Their opinion is sometimes considered, but it can usually be argued against if the facts support disability. Docs are given deference, but it is a far cry from the treatment they receive within their own community (clinics and hospitals). They don't get it, and they don't want to hear it.
So you have to stick up for yourself. If you aren't working, you need to be on benefits. If you are working, you don't need them any more. If your doc doesn't support this, why not? Does s/he have your best interest in mind?
It is very frustrating for me personally, because the last 5 docs I've seen got sacked (by me) for some various display of stupidity or ignorance regarding AIDS disability (which complicated my access to needed benefits), and professionally because I see the damage that is done to folks when benefits are lost.
The above applies to SSDI only. SSI has different rules on when you are disabled. LTDs vary with each particular policy.
Feel free to share your story about your doctor not understanding your needs when it comes to disability benefits.
Monday, July 23, 2007
Health Insurance for HIV'ers
The availability of health insurance is a topic is near and dear to most people living with HIV. We have heard time after time that early intervention and treatment are important factors in surviving HIV infection. In the current American health care system, if you have a job you MIGHT have coverage to pay for that early intervention. If you are poor, and especially if you haven't yet been sick (or if you haven't been "sick enough") you most likely do not have any coverage at all.
Why is this so? It is because, in America, the health care system is subject to the "free-market." Health care financing is managed by health insurance companies and health maintenance organizations. The first goal of these companies is to earn a profit. Their secondary goal is to provide health care to their insureds. The system was developed in the 1970's, with a promise that it would result in more people being covered by insurance.
The result, however, has been somewhat less. At last count, there are still 47 million people in this country who do not have any health coverage at all. Some of these people are HIV+, and many of them do not yet know it. Under the current system, these people will most likely enter the system only when they become profoundly ill--a senseless and needless tragedy.
Here is an example of how it works. This is the true story of an HIV+ young man I know (who has given permission for his story to be used here) who fell through the cracks. He tested positive for HIV in the late 1980's, but lacked insurance and so believed there was not much he could do but wait to die. He'd had a couple of jobs that offered health insurance, but the coverage always terminated when he left the job.
I asked him why he didn't stay in one of those jobs--his answer was that keeping health insurance was not a good enough reason to stay in a bad job. But that was the only option available to him. That, or go without.
So, he went without. Even when he started feeling like he was getting sick, he couldn't see a physician because he couldn't afford the fees. Until one day he got so sick that he was taken to the ER. There he was diagnosed with PCP, and admitted to the ICU. He spent 2 weeks in the hospital. The bill was $70,000. ONLY because he had fallen gravely ill, he was now eligible for Medicaid, which picked up the tab.
For the next few years he maintained himself on Medicaid, and was able to see a physician on a regular basis. And he got better. In fact, he started feeling so well that he decided it was time to return to work. He found a job he liked, which unfortunately did not offer health insurance as a benefit. Unfortunately for him, Medicaid is a poverty-based benefit, and when he returned to work, he became ineligible to continue on the program.
I asked him why he went back to work, if it could jeopardize his health care. He said that he didn't know that he would become ineligible when he started working again, but that it wouldn't have mattered anyway--he wanted to work.
So, he went off his meds, and stopped seeing his doctor. He lasted about four years before he got profoundly sick again (go figure). He then got back onto Medicaid. He is now feeling good again.
(By way of shameless self-promotion: It was at this point in his story that we met, and I was able to get him approved for disability benefits. He now has Medicare and Medicaid, and he will never be uninsured again. The story does have a happy ending!)
He is not the only person with HIV to have a story like this. As I've said, mine is similar, and it is a story I hear way too often from my HIV+ clients. Why should this be so? Because the American health care system is very poorly organized, and geared toward profit. Access is almost exclusively through employment. Not every job offers health insurance, though.
So what can we say to the HIV+ people among the 47 million uninsured? Don't get sick? Or if you get sick, get really sick or you face financial ruin. (Example: I just referred someone to a bankruptcy attorney, who has $300,000 in AIDS-related hospital bills)
This cannot be acceptable in 21st Century America. America is alone in the world with this "health care for profit" nightmare. In the rest of the world, health care is a right; here it is merely a benefit.
The only solution, in my opinion, is something known as "single-payer" insurance. The single-payer should be the government; and profit should not enter into the equation. This has been proposed in Congress: House Res. 676. Will it pass anytime soon? What do you think.
Under a single-payer system, the young man whose story I told would not have had to wait until he was at death's doorstep to see a doctor, and he might not have gotten sick at all. There would have been no reason to refer the other client to a bankruptcy attorney, since if there were a bill at all, it would have been for much less.
Even though it is not a popular opinion in this country, we do bear a responsibility for each other. We really are all in this together. Is this collectivism? Yes. Is that a bad thing? NO!
People living with AIDS have a special responsibility to point out the seriousness of this problem, because we experience it more profoundly than others, and to help move society toward a solution. Work is being done right now; HR 676 is one example of a good solution. I believe that NAPWA is also working on the issue. I will edit this post shortly with specifics about their efforts (unless someone beats me to it in the comments.) Get involved. Make your voice heard.
Edit: I was wrong about NAPWA. If they have a health care advocacy initiative, I didn't find it on their website. Which doesn't mean they don't have one. In any event, I am looking for advocacy initiatives, and will report what I find in future posts. If anyone has information related to this, please post it here. It will be greatly appreciated. JR
This post is the first in a series that will look at solutions to the health insurance problem. Future posts will deal with the various proposals for health care reform. HR 676 is one, but there are others. I will write about all I come across--including the ones I think are a bad idea. I also plan to write about the presidential candidates and their different proposals. Here's a hint: the Republicans like the status quo, as do some of the Democrats.
If you have a health care nightmare story that you would like to share here, please feel free to vent in the comments. Posts from HIV+ people living in other countries are welcome too. Tell us how ridiculous we are, but please offer some suggestions. We need all the help we can get. Or if you have anything other thoughts on the subject, feel free. Like I said, we are all in this together. Get involved.
Why is this so? It is because, in America, the health care system is subject to the "free-market." Health care financing is managed by health insurance companies and health maintenance organizations. The first goal of these companies is to earn a profit. Their secondary goal is to provide health care to their insureds. The system was developed in the 1970's, with a promise that it would result in more people being covered by insurance.
The result, however, has been somewhat less. At last count, there are still 47 million people in this country who do not have any health coverage at all. Some of these people are HIV+, and many of them do not yet know it. Under the current system, these people will most likely enter the system only when they become profoundly ill--a senseless and needless tragedy.
Here is an example of how it works. This is the true story of an HIV+ young man I know (who has given permission for his story to be used here) who fell through the cracks. He tested positive for HIV in the late 1980's, but lacked insurance and so believed there was not much he could do but wait to die. He'd had a couple of jobs that offered health insurance, but the coverage always terminated when he left the job.
I asked him why he didn't stay in one of those jobs--his answer was that keeping health insurance was not a good enough reason to stay in a bad job. But that was the only option available to him. That, or go without.
So, he went without. Even when he started feeling like he was getting sick, he couldn't see a physician because he couldn't afford the fees. Until one day he got so sick that he was taken to the ER. There he was diagnosed with PCP, and admitted to the ICU. He spent 2 weeks in the hospital. The bill was $70,000. ONLY because he had fallen gravely ill, he was now eligible for Medicaid, which picked up the tab.
For the next few years he maintained himself on Medicaid, and was able to see a physician on a regular basis. And he got better. In fact, he started feeling so well that he decided it was time to return to work. He found a job he liked, which unfortunately did not offer health insurance as a benefit. Unfortunately for him, Medicaid is a poverty-based benefit, and when he returned to work, he became ineligible to continue on the program.
I asked him why he went back to work, if it could jeopardize his health care. He said that he didn't know that he would become ineligible when he started working again, but that it wouldn't have mattered anyway--he wanted to work.
So, he went off his meds, and stopped seeing his doctor. He lasted about four years before he got profoundly sick again (go figure). He then got back onto Medicaid. He is now feeling good again.
(By way of shameless self-promotion: It was at this point in his story that we met, and I was able to get him approved for disability benefits. He now has Medicare and Medicaid, and he will never be uninsured again. The story does have a happy ending!)
He is not the only person with HIV to have a story like this. As I've said, mine is similar, and it is a story I hear way too often from my HIV+ clients. Why should this be so? Because the American health care system is very poorly organized, and geared toward profit. Access is almost exclusively through employment. Not every job offers health insurance, though.
So what can we say to the HIV+ people among the 47 million uninsured? Don't get sick? Or if you get sick, get really sick or you face financial ruin. (Example: I just referred someone to a bankruptcy attorney, who has $300,000 in AIDS-related hospital bills)
This cannot be acceptable in 21st Century America. America is alone in the world with this "health care for profit" nightmare. In the rest of the world, health care is a right; here it is merely a benefit.
The only solution, in my opinion, is something known as "single-payer" insurance. The single-payer should be the government; and profit should not enter into the equation. This has been proposed in Congress: House Res. 676. Will it pass anytime soon? What do you think.
Under a single-payer system, the young man whose story I told would not have had to wait until he was at death's doorstep to see a doctor, and he might not have gotten sick at all. There would have been no reason to refer the other client to a bankruptcy attorney, since if there were a bill at all, it would have been for much less.
Even though it is not a popular opinion in this country, we do bear a responsibility for each other. We really are all in this together. Is this collectivism? Yes. Is that a bad thing? NO!
People living with AIDS have a special responsibility to point out the seriousness of this problem, because we experience it more profoundly than others, and to help move society toward a solution. Work is being done right now; HR 676 is one example of a good solution. I believe that NAPWA is also working on the issue. I will edit this post shortly with specifics about their efforts (unless someone beats me to it in the comments.) Get involved. Make your voice heard.
Edit: I was wrong about NAPWA. If they have a health care advocacy initiative, I didn't find it on their website. Which doesn't mean they don't have one. In any event, I am looking for advocacy initiatives, and will report what I find in future posts. If anyone has information related to this, please post it here. It will be greatly appreciated. JR
This post is the first in a series that will look at solutions to the health insurance problem. Future posts will deal with the various proposals for health care reform. HR 676 is one, but there are others. I will write about all I come across--including the ones I think are a bad idea. I also plan to write about the presidential candidates and their different proposals. Here's a hint: the Republicans like the status quo, as do some of the Democrats.
If you have a health care nightmare story that you would like to share here, please feel free to vent in the comments. Posts from HIV+ people living in other countries are welcome too. Tell us how ridiculous we are, but please offer some suggestions. We need all the help we can get. Or if you have anything other thoughts on the subject, feel free. Like I said, we are all in this together. Get involved.
Wednesday, May 30, 2007
The HIV Legal Check-up
What's This?
The HIV Legal Check-up is a diagnostic legal needs assessment for people living with HIV infection, developed by HALSA (HIV/AIDS Legal Services Alliance) and the Young Lawyers Division of the ABA (of which I am a member for one more year!) Its purpose is to assess legal needs, educate, and make appropriate referrals for services.
Under other circumstances, a client would complete a screening questionnaire and then meet with an attorney to discuss the issues that arise from the client's particular circumstances. The attorney would be available to answer questions, dig a little deeper to identify hidden issues, and make a referral to a service provider.
I am going to attempt to implement the Check-Up on the internet, between this blog and my website gabbardlaw.org. The blog portion will be mostly interactive: I will post about various topics and invite comments from you all. The website will contain mostly resources and materials for reference. Your feedback will affect the content both on the site and on this blog. Tell me what you want to know about!
The Topics
The HIV Legal Check-Up as it was designed looks to the following areas of law:
The HIV Legal Check-up is a diagnostic legal needs assessment for people living with HIV infection, developed by HALSA (HIV/AIDS Legal Services Alliance) and the Young Lawyers Division of the ABA (of which I am a member for one more year!) Its purpose is to assess legal needs, educate, and make appropriate referrals for services.
Under other circumstances, a client would complete a screening questionnaire and then meet with an attorney to discuss the issues that arise from the client's particular circumstances. The attorney would be available to answer questions, dig a little deeper to identify hidden issues, and make a referral to a service provider.
I am going to attempt to implement the Check-Up on the internet, between this blog and my website gabbardlaw.org. The blog portion will be mostly interactive: I will post about various topics and invite comments from you all. The website will contain mostly resources and materials for reference. Your feedback will affect the content both on the site and on this blog. Tell me what you want to know about!
The Topics
The HIV Legal Check-Up as it was designed looks to the following areas of law:
- Privacy and Confidentiality
- Discrimination
- Housing
- Immigration
- Family Law
- Insurance
- Public Benefits
- Debtor/Creditor issues
Since I have AIDS myself, I know that this list is not comprehensive. There are some practicalities that I want to address, such as:
- Understanding disability and AIDS
- Dealing with your primary healthcare provider
- Dealing with AIDS service organizations
- AIDS and self-advocacy
- "Retirement" planning for people with AIDS
And the list is still not complete. This is where you come in, gentle reader. What would you like to discuss? The only limitation I will impose is that the topic be HIV/AIDS-related.
I would also like to invite you to visit my website. On the AIDS Law Project page, there is a link to the ABA's Directory of Legal Resources for People with AIDS. The last page of the document is a form to add services to the directory. If you know of something that is not listed, let them know.
I have set up an RSS for this blog, if you would like to subscribe. The next post will be on privacy and confidentiality (unless something else tickles my fancy first). Until then,
JR
Monday, October 09, 2006
What is AIDS Law?
I attended a national training on depositions last weekend. Met many great people from many different places, all very talented attorneys. One of the threshold questions in any first encounter was "What do you practice?" My answer was "housing law, and I am transitioning to family law." The question was an excellent ice-breaker, and we all knew it. There is no easier way to get a lawyer talking than to ask about his or her practice.
Later I wondered whether I could have answered "AIDS law" to that question. Is this a practice area? I have helped HIV+ people get governmental disability benefits as a benefits counsellor, and helped HOPWA recipients stay housed as a tenant's attorney, and I am sure the issue will come up quite often in my new career in family law. Does that make me an AIDS lawyer--beyond the fact that I have AIDS? Is there even such a thing as an AIDS law practice?
The legal profession is organized by discipline (civil, criminal, probate, family), and by specialization within each discipline (injury, commercial, real estate, white-collar, indigent, estate planning, divorce, dependency) and further by function within each speciality (litigation or transactional, plaintiff or defense). Where, if at all, does AIDS law fit into this rubric?
AIDS law is the sub-set of laws spanning the broad spectrum of legal disciplines that affect persons infected with HIV. Some convey civil rights (ADA, Unruh Act), some impose obligations and assign criminal penalties (ie. felony HIV transmission laws). Some older laws still impose duties of disclosure upon the transfer of real property. Some laws define privacy rights (HIPPA). HIV transmission is being alleged as the basis of a personal injury case.
I am just now beginning to learn family law practice--an area which I predict I will enjoy a great deal. I am not yet familiar with the law, so I am steeling myself for the discovery of what effect HIV status has on parentage rights and the "presumptions." So far I haven't heard or read anything negative about it, but usually the problems come up in the practice, not in the law. As minor's counsel I will probably have HIV+ kids as clients, so it will be interesting to see how their needs are addressed.
So that is my goal for this blawg: to define the sub-set AIDS Law, to discuss it and discover its boundaries.
J.R.
Later I wondered whether I could have answered "AIDS law" to that question. Is this a practice area? I have helped HIV+ people get governmental disability benefits as a benefits counsellor, and helped HOPWA recipients stay housed as a tenant's attorney, and I am sure the issue will come up quite often in my new career in family law. Does that make me an AIDS lawyer--beyond the fact that I have AIDS? Is there even such a thing as an AIDS law practice?
The legal profession is organized by discipline (civil, criminal, probate, family), and by specialization within each discipline (injury, commercial, real estate, white-collar, indigent, estate planning, divorce, dependency) and further by function within each speciality (litigation or transactional, plaintiff or defense). Where, if at all, does AIDS law fit into this rubric?
AIDS law is the sub-set of laws spanning the broad spectrum of legal disciplines that affect persons infected with HIV. Some convey civil rights (ADA, Unruh Act), some impose obligations and assign criminal penalties (ie. felony HIV transmission laws). Some older laws still impose duties of disclosure upon the transfer of real property. Some laws define privacy rights (HIPPA). HIV transmission is being alleged as the basis of a personal injury case.
I am just now beginning to learn family law practice--an area which I predict I will enjoy a great deal. I am not yet familiar with the law, so I am steeling myself for the discovery of what effect HIV status has on parentage rights and the "presumptions." So far I haven't heard or read anything negative about it, but usually the problems come up in the practice, not in the law. As minor's counsel I will probably have HIV+ kids as clients, so it will be interesting to see how their needs are addressed.
So that is my goal for this blawg: to define the sub-set AIDS Law, to discuss it and discover its boundaries.
J.R.
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