Attorney Interviewed for World AIDS Day

Diane Spicer, staff attorney in the Civil Practice's Health Law Unit, was interviewed on WBAI Radio for World AIDS Day, regarding the work she and Rebecca Novick, also a staff attorney in the HLU, have been doing around the state's plan to mandatorily enroll Medicaid recipients with HIV/AIDS into Medicaid managed care plans.


WBAI December 1, 2008


So you get a little bit of the activist perspective on World AIDS Day. Now we're going to switch topics and talk about a proposal that the state of New York is putting on the table, or developing, I guess I should say, to require people who are on Medicaid who are HIV positive to be mandatorily enrolled in managed care programs. Joining me to discuss this topic is Diane Spicer, who's a health law attorney with the Legal Aid Society here in New York.

Welcome to HEALTH ACTION, Diane.

Ms. DIANE SPICER (Legal Aid Society Health Law Attorney): Hi. Nice to be here.

HANNAY: So, let's just start with a little bit of background before we get into what the state is proposing, and I want to alert listeners we're going to zip through this rather quickly given where we are on the clock. And as things progress on this more substantively, early part of next year we'll bring you and some other folks back and get into it in more detail. But let's look at this as sort of a heads up, this is coming down the pike kind of thing. So, how does Medicaid work now for people who are HIV positive?

Ms. SPICER: Right now people who are HIV positive and living with AIDS are exempt from Medicaid managed care, and what that means is they do not--they're not required to join a Medicaid managed care plan, but they can do so if they wish to do so. And if they wish to do so, they can join a regular Medicaid managed care mainstream plan or a special needs plan, which is tailored and developed specifically for people living with AIDS and HIV.

HANNAY: And so that's the coverage side of things, how does (sic) things work now in terms of where people on Medicaid go to get the services and how would it work in a managed care plan?

Ms. SPICER: Currently if you're on regular Medicaid without a managed care plan you could go to any Medicaid provider that accepts fee for service for Medicaid or regular Medicaid, so any clinic, any Medicaid provider.


Ms. SPICER: If you were in a managed care plan, however, you'd need to get services and treatment only from providers who participate in the managed care plan's networks. So, for example, the hospitals, doctors and other service providers who accept the managed care plan and participate.

HANNAY: OK. So what is the state saying they want to do now perhaps?

Ms. SPICER: The state's plan is to now move on with mandatory enrollment of other disabled populations, which started in 2005 when the state department of health mandated people who were disabled and then later in 2007 when they mandated people with serious and persistent mental illness, and now the next category of Medicaid recipients that they want to require to mandated into managed care plans is people living with HIV and AIDS.

HANNAY: And this is part of the state has been gradually transforming over the last decade or so its Medicaid program into a managed care program. They started out with regular everyday people and now they're moving in some of these special population groups.

Ms. SPICER: Right. They're moving from, you know, regular Medicaid recipients to Medicaid recipients who are special needs populations or people with disabilities.

HANNAY: So, is there any research out there that shows what happens to people with these special needs, or in particular, people with HIV when they get required into managed care plans?

Ms. SPICER: Well, there are two studies that the State Department of Health has done. The State Department of Health has done a comparative study of the three different delivery systems in the Medicaid program in New York State, which is the fee for service Medicaid system, the mainstream managed care system and the special needs plan systems, and they have found higher quality of care in managed care in the special needs plans and in the mainstream managed care plans. However, in terms of specific quality of care surveys for people with disabilities, they've--the state's Department of Health has only done a consumer satisfaction survey of people with disabilities who in the last two or three years were enrolled in managed care, so they haven't done any kind of quality and outcome based surveys but only consumer satisfaction surveys.

HANNAY: So when we think about putting a population like HIV positive people into a managed care program, what are some of the pros and cons of doing that? I mean theoretically managed care is supposed to offer all these great things, and I suppose it does in some situations, but you know.

Ms. SPICER: Yes. Theoretically, managed care is supposed to manage your care, so it's supposed to be kind of a coordinated effort at getting you what you need in the network and getting you all the services available under your--under the contract you have, or under the contract that the state has with the plan.

HANNAY: With the plan, mm-hmm.

Ms. SPICER: But some of the things that--the issues that the Legal Aid Society has found with people with disabilities who were mandated into managed care plans is that they don't have such an easy time with managed care simply because they find it hard to navigate the managed care system in a way that's effective, and that poses barriers to care for them.

HANNAY: What are some of the navigational issues that one needs to think about?

Ms. SPICER: So, for example, someone with serious disabilities who has chronic healthcare needs would--would encounter problems upon enrollment in continuity of care and transitional care.


Ms. SPICER: One of the big problems the Legal Aid Society saw with people with disabilities who recently went mandatory into managed care plans was people receiving specialty care and long-term care services were enrolled in plans, didn't realize they were going to be enrolled in plans and their current--their providers that they were seeing at that point did not--were not--did not participate in their plans, so in effect they were cut off of services upon enrollment into managed care plans. And this is very dangerous for people with a lot of health needs, people who are medically fragile.

HANNAY: And then once you get in the program you kind of have to figure out how do you make it work, it's a whole different animal than fee for service.

Ms. SPICER: Right. There are a lot of rules that go along with managed care. You have to understand how to use your managed care plan. For example, you need a PCP who gives you a permission--

HANNAY: That's a primary care provider.

Ms. SPICER: Right, who gives you permission to go to specialist doctors and other service providers. You need to get referrals to go to--from your primary care provider to go to other specialists and service providers. You need prior authorization to get different types of care and to be admitted to the hospital in a non-emergency situation. So there are a bunch of rules that if people understood how to--what the rules are in managed care, they would have a much easier time.

HANNAY: Right. And they're hard enough for us regular folks to understand much less if you're facing a serious illness or you're low income to qualify for Medicaid and so forth.

Ms. SPICER: That's correct.

HANNAY: There's a whole different layer on top of it. Your organization, Legal Aid Society, has been working in an adhoc work group with AIDS service organizations and advocacy groups to kind of figure out how you want to respond to this proposal. What are some of the concerns that you've been thinking about and discussing, and have you been sharing them with the state in any way?

Ms. SPICER: Yes. We've been--our work group has been meeting with the State Department of Health, the Office of Managed Care, and also the AIDS Institute.

HANNAY: Which is the section of the Department of Health that oversees a whole variety of HIV/AIDS programs.

Ms. SPICER: Right. To try to express to them, you know, the experience that we've had and what our recommendations for this process are. Some of the recommendations include massive outreach and training campaign outreach to consumers and providers and managed care plans about how this new system will work and who is--what's the population that's newly going to be enrolled and how they can work managed care. And also training to the providers and plans on how to now bill in this new system and what is required under this new system in terms of medically necessary care.

So that's one of our recommendations and the State Department of Health has said that, you know, they're going to be committed to doing, you know, a massive outreach campaign so that there are not breaks in care and problems with continuity of care for people with HIV who are newly enrolled. There's lots of other recommendations that we have made as far as continuity of care goes and also in kind of revising and streamlining the enrollment process to make sure that people understand they're going to be enrolled and understand what managed care means and how to use, and understand that they have the same rights that they would under the Medicaid, for example, to appeal and ask for a fair hearing if they're denied services or treatment.

HANNAY: So let's now sort of skip to a theoretical situation. Let's say I'm a person living with HIV/AIDS, I'm on Medicaid, what should I be expecting over the next three to six months?

Ms. SPICER: Now--

HANNAY: Anything yet?

Ms. SPICER: I don't know if--we don't have a specific timeline.


Ms. SPICER: I know that the State Department of Health has requested permission from the federal government to start rolling out the mandatory Medicaid managed care program for people living with HIV and AIDS, so what--and the federal government has 120 days to respond to that request to start mandatory enrollment. So, for persons living with HIV and AIDS in New York City, what they should look for is--they should--they will get mailers, they should look for--they'll get a set actually of five mailers from a company called New York Medicaid Choice, which is the enrollment broker for the Medicaid program. They're the organization that enrolls and disenrolls people from plans. So they'll get those mailers that explain that they--their previous exemption from managed care, which was being HIV positive, is--no longer exists and they either need to enroll in a plan or affirmatively apply for another exemption. And if they don't do one of those two things, they will be auto assigned into a managed care plan, which means that the State Department of Health will randomly pick a plan for them.

HANNAY: Right. Which may or may not be in their neighborhood or meet their needs or a whole lot of things.

Ms. SPICER: Right. It may not have, you know, their doctor in the directory. It may not have their home care provider in the directory and it may not have the hospital clinic that they go to in their directory, so it's important for people to look out for those mailers so that they can figure out whether they need another exemption and/or get into a plan that's going to meet their needs and have their providers in the network.

HANNAY: So I know I'm often times get stuff like this in the mail and I'll just toss it aside and think I'll get to it later, so don't do that this time.

Ms. SPICER: Right. And I mean there's an issue for people who are kind of, you know, not housed--not very permanently housed, and of course, everybody gets tons of mail and throws it out. I know I get mail--if I don't see mail that looks familiar, I chuck it. So it's really important for people to understand that it will--it is coming eventually and that they need to look out for it and get assistance in picking a plan and enrolling. And this is going to affect about 30,000 people in New York City, so it's quite a large number of people who are now going to have a major change in the way that their healthcare is delivered.

HANNAY: And very quickly, is there a place people can turn to when they start to get these mailings where they can talk to somebody and help figure this out?

Ms. SPICER: Yeah. The State Department of Health contracts with New York Medicaid Choice; they are the enrollment broker for Medicaid so they can help people pick a plan, people can call them and explain to them who their providers are. If Medicaid recipients have questions about how to choose a plan, they can answer those questions. We also--the Legal Aid Society also has a health hotline that we run, it's open every Tuesday; the number is 212-577-3575.

HANNAY: Repeat the number.

Ms. SPICER: It's 212-577-3575. That's the Health Law Help Line at Legal Aid and we can give advice about, you know, the process for people living with AIDS being mandated into managed care and how they can get all of the benefits they used to get under the new delivery system.

HANNAY: The Community Service Society also has the managed care consumer assistance program, so people can check with that. That number is 212-614-5400. 212-614-5400, and that's specifically also designed to help people facing this kind of situation. Well, thank you very much. We've been getting a quick primer from Diane Spicer, health law attorney at the Legal Aid Society about plans for New York State to begin to require people on Medicaid who are HIV positive to enroll in a managed care plan. We'll have you back next year--early next year as this thing develops and maybe we can take some listener calls and help people sort all this out.

Ms. SPICER: Great. Thank you.