AIDS Legal Project
By Frances Presma/Photos: Don Hamerman
The AIDS Legal Project Turns 10
Invaluable,” is how Gordon Lipscomb describes the AIDS Legal Project. A clinical social worker in Duke Hospital’s Infectious Diseases Clinic, Lipscomb has been referring patients with legal issues relating to HIV and AIDS to the Project since it was established at the Law School in January 1996.
Without the Project, says Lipscomb, many of his patients would have nowhere to go for end-of-life planning, such as wills, health care powers of attorney, and standby guardianships that allow HIV-infected parents to make permanent plans for their children, all matters routinely handled by law students. Nor would they find a greater source of expertise on issues relating to HIV and AIDS, he adds.
“There are few people who have the expertise to appeal a disability case where HIV is the issue, that [Clinic Director] Carolyn McAllaster and [Supervising Attorney] Allison Rice do. As important is the determination with which they and their students fight for those claims.”
Lipscomb recalls their work in pursuing a $50 monthly disability stipend from a patient’s former employer, a large corporation. “I don’t think any private attorney would spend the time and effort it took to recover that $50. Yet for the patient, it meant the difference between living on $650 per month, which he got from Social Security, and $700 per month–a huge difference. The company probably assumed it could get away with denying the claim, thinking an individual of such modest means would never have the resources to take it on.”
Clinical Professor McAllaster recalls that case, which two students handled over the course of a year, filing a claim in federal court. Pursuing disability and other benefits claims, primarily through Medicare, Medicaid, and the Social Security Administration, is a staple of the Project’s caseload, says McAllaster, work that has enormous impact on clients’ lives, sometimes making the difference between homelessness and a modicum of stability. She notes that even with the promise of a fee at some point, many private lawyers would be reluctant to represent the clients the clinic does.
“Our clients are difficult. They often have mental illness, substance abuse problems, or a combination of the two, and hanging in there with them can be challenging.”
A Terrific Training Ground
It was serving the unmet legal needs of a highly stigmatized, largely indigent segment of the population that motivated McAllaster to start the AIDS Legal Project 10 years ago. Doing so has proven highly educational for students, in terms of teaching superb research, advocacy, and drafting skills, as well as those pertaining to relationship-building, legal ethics, and compassion that mark truly great lawyers.
It was there I learned how to conduct an investigation-how to be persistent, track down the client, the doctors, and whoever else we needed to help build a record, and then take that information and translate it into a persuasive piece for a court.
- Julie Riewe '99
“We win disability cases with exceptional legal work. It is the ‘value added’ that we put into the case that is the key to success,” says Rice. In the process of reviewing a doctor’s affidavit, drafted by a student to support a benefits appeal, she points out that it has to precisely address myriad issues before an individual with HIV will be considered disabled by the Social Security Administration.
“It’s extremely challenging to acquire expertise and understanding of a particular client’s medical condition and situation, have an intelligent conversation with a doctor, and then draft an affidavit for the doctor to sign off on.” Doing so involves skills that are “totally relevant” to practice, adds Rice. “Students learn evidence–what can a witness, lay or expert, say, how to lay a foundation for the evidence, and how to provide concrete detail to support conclusions that the witness is making.”
Julie Riewe ’99 says that in her work as an investigator in the enforcement division of the Securities and Exchange Commission she puts to daily use skills she first learned during a semester in the AIDS Legal Project, handling disability appeals, among other matters.
“It was there I learned how to conduct an investigation–how to be persistent, track down the client, the doctors, and whoever else we needed to help build a record, and then take that information and translate it into a persuasive piece for a court. That’s exactly what I do now in conducting investigations and making recommendations to the Commission as to whether or not it should bring an action, based on the facts.” Riewe further credits her clinical semester with teaching her the importance of taking ownership of her cases. “I learned quickly that you have to be proactive. You can’t be waiting for someone to tell you what to do.”
Meeting New Legal Needs
When she started the AIDS Legal Project in 1996, “people were dying more quickly of AIDS,” recalls McAllaster. End of life matters, including helping clients sell their life insurance policies, made up a large portion of the Project’s caseload. The legal needs of people with HIV and AIDS have changed considerably as new antiretroviral drugs have shifted HIV from a death sentence to a chronic, though certainly life-threatening, condition says McAllaster.
“While standby guardianships, health care powers of attorney, wills, and living wills are still central to what we do, we now handle many more cases in the benefits arena for people who are returning to work and need to figure out how to do that without losing Medicaid and Social Security benefits. We’ve become experts on the return to work rules.”
The Project has taken up two new issues in recent months, the first of which McAllaster calls “the fleeing felon” issue. As of January 1, 2005, individuals with outstanding felony warrants or who have not fully satisfied probation requirements can be cut off from receiving Social Security Disability benefits, as well as veterans’ benefits, including medical treatment. “That’s an enormous hardship,” says McAllaster.
The other issue involves how people with HIV and AIDS will obtain their medications under the new federal program known as Medicare Part D; in the early months of 2006 the program has garnered headlines for literally causing havoc in pharmaceutical access across the country. For some clients of the AIDS Legal Project, the implementation of Medicare Part D will mean having pharmaceutical coverage shifted from a single program, such as the AIDS Drug Assistance Program (ADAP) to one of 39 drug plans available in North Carolina, each of which involves a different co-pay and premium.
As a service to individual clients of the Project and as an outreach mission for the health care professionals that rely on it for advice, advanced clinic student Kara MacKillop ’06 is comparing the ADAP formulary to each of the plans available under Medicare Part D, and will produce guidelines for clients and caseworkers as to which plans seem to be better. “Nobody else is doing it,” notes McAllaster.
MacKillop is also addressing the fleeing felon issue in her advanced clinic work, trying to identify the parameters of the relevant federal regulation–an amendment to the Social Security Act–and working with case- and health care workers at Durham’s VA Hospital to identify which HIV patients could be affected, so that Project students can work to clear warrants on a proactive basis to prevent interruption in health care services.
The Changing Face of AIDS
McAllaster is justifiably proud of the high quality legal service the AIDS Legal Project has provided to more than 1,000 indigent clients with HIV and AIDS over the past 10 years. She is quick to pass credit on to the students.
“I am always amazed at the focus they bring to their cases, and the amount of work they put in — far more than in a regular four-credit course. I’m so proud that they see the value in doing this work, because I am more and more convinced that without a program like this many of our clients, at least, would not have gotten help. They really are on the margins.”
More women are seeking help from the clinic, she notes, many of them African-American, which reflects the current national demographic of HIV and AIDS transmission; 30 percent of newly diagnosed HIV and AIDS patients in the United States are women, 64 percent of them African-American.
“The women tend to be younger and poorer than the men that come to us, and in poorer health– they seem to be sicker and infected earlier.” The stigma of HIV and AIDS is undiminished, adds McAllaster, and discrimination cases continue to make up a significant portion of her students’ caseload. “Some people find it permissible to discriminate against someone with HIV or AIDS, through a denial of services, when they would never think it permissible to discriminate based on the color of their skin. Yet we see it every day.”
While there are fewer people dying from AIDS, that fact reflects the people who have financial and health care resources, and “have it together” to take their medications. “Many
of our clients have so many other problems–poverty, addiction, mental illness–that AIDS is way down on the list for them.”
Many AIDS Legal Project students and alumni report finding as much lasting value in their experience of engaging with marginalized, stigmatized, and often unreliable and difficult clients, as in
the solid legal skills of drafting, counseling, and advocacy.
“Carolyn and Alison did an excellent job of teaching us people skills as well as technical skills,” says Lauren Donner Chait ’06. “We had workshops on interviewing, asking proper questions, and finding ways to connect and communicate with clients, skills I think will stay with me forever.” She also learned to be resourceful in contacting clients who were often homeless. “You figured out how to get in touch with your client as quickly as possible through any means.”
Eli Mazur ’02 recalls meeting with clients in their doctors’ offices–a common occurrence for students in the Project. “Most people with HIV and AIDS don’t have the means or the energy to go to 10 different offices for meetings. And it takes a tremendous amount of work to navigate the administrative law system in order to get disability,” he says. “In assisting them, you can see how you are adding value to that person’s life.” Mazur says that it brought home to him the relationship between law and public policy, now the focus of his teaching and writing at the Fulbright Economics Teaching Program in Vietnam.
The "Power of Paperwork"
“The disability, guardianship, and custody cases I worked on often involved huge emotional battles between family members, or between the government and the client,” recalls Mazur. “The wills were a very personal thing. By the time someone dies of AIDS they literally have nothing, but even so it always struck me how calming it was for clients to decide who should get the residual of their estate.”
Writing in her clinic journal about some of the lessons she derived from her semester with the AIDS Legal Project, Angie Heywood Bible ’06 also noted what she called “the power of paperwork”–the honor that certain clients obviously felt at having someone ask them about their end of life wishes regarding their health and possessions.
“Some of our clients have already reached the point where they don’t think their lives are worth anything. But something about sitting down with an attorney (or student) who stresses to them that they need to think about their end-of-life planning makes them feel worthwhile, like someone out there suddenly believes they’re valuable. I noticed this most in working with Georgia S.* You would have thought I’d given her money by the way she handled her documents. When I told her she needed to think about talking to her health care agent, she seemed startled to think that anyone should want to know about her desires. I really don’t think she’d thought about it before.”
That sort of reaction is reported by many AIDS caseworkers and clinicians who send clients to the Project, or who host Duke Law students on their regular “field trips” to meet with clients outside the Triangle in need of end-of-life documents. Stephanie Bouis, a Duke clinical social worker whose patients often suffer from mental illness, addiction, and HIV–an “isolated and estranged population”–says the honor her clients feel is a tribute to the students’ training, candor, and commitment. “My clients don’t warm up to people they don’t respect. The students really learn to ‘listen between the lines’ to my clients, and have proven to be highly tenacious when they need to be.”
Compassion is key to the whole AIDS Legal Project experience, says McAllaster. “It’s hard to forget people who are down and out when you’ve been through this clinic.”