Finding out that you're HIV-positive can be traumatic and scary enough, but if you feel clueless and alone about what to do, where to go, or who to trust, it can be even worse. That's when finding a case manager may be exactly what you need. PA sat down with Kevin Bernal and Lorraine Hayes to get the inside story. Kevin is currently the Case Management Supervisor/Total Care Portal Coordinator and Lorraine was, until most recently, a Medical Case Manager at Test Positive Aware Network (TPAN) in Chicago.
The AIDS Foundation of Chicago (AFC) oversees case management at all the AIDS service organizations in the city. For anyone in Chicago who's interested in finding a case manager, contacting AFC is the first step.
If you live elsewhere, contact your local AIDS service organization or a state HIV/AIDS hotline for information on how you can find a case manager.
Based on information gathered during a phone intake, AFC considers the needs and location of the client, and the availability of case managers at agencies in their area, and then assigns the client to the appropriate agency.
It's a well known fact that many newly diagnosed people react to the news by diving into denial, avoiding medical care and treatment, hiding their status from everyone, including themselves. But by the time most seek out a case manager, they've gotten to the point where they recognize they need some help.
In Bernal's experience, there are also clients who may have known they were positive for awhile, but for whom barriers to seeking help included lack of insurance, low or no income, or fear that they'd be turned away for inability to pay for services or treatment. "They weren't aware that there are programs that would help them pay for their drugs, that there are Ryan White programs that will help them see their doctor and get their lab work every three months," says Bernal. "A lot of people don't know that there are programs like CHIC [COBRA Health Insurance Continuation] that will help them pay their COBRA insurance premium if they become unemployed. If they don't know that, they usually let that COBRA expire and then have no insurance at all. We can help people get connected to those kinds of programs."
Hayes also points out that there are many other community resources that clients may not know about either, where care is provided on a sliding-scale fee basis. This is usually more manageable for most people and case managers can refer their clients to those places.
Perhaps a harbinger of things getting worse, both Hayes and Bernal have seen clients who tested positive but didn't seek care or treatment because they'd heard about ADAP funding being cut and just assumed they wouldn't be able to get the drugs that would keep their HIV under control. "Those clients have put getting treatment on the back burner until something happens and they're having trouble getting around," says Bernal, "or their CD4 count is so low and they're in bad shape by the time they find out that other programs were out there."
So what happens at the first meeting between a client and their case manager?
There is an extensive intake form and several other forms that must be filled out and signed (confidentiality, release of information, etc.). Clients are asked to bring with them proof of identity, residency, income, and HIV status. During the intake, case managers gather information that will help them to understand where the client is and what their needs are -- medical history (including substance abuse and mental health); medication adherence; criminal history; employment and housing situation; contact information for the client and whoever they want to be notified in case of emergency; nutritional realities; transportation needs; and family and childcare needs.
Given the extent and occasional sensitivity of all this information, it was good to hear that both Bernal and Hayes feel their clients, recognize that in order to get the help they need, a true picture of the issues they're dealing with is necessary. Substance abuse answers are the ones most frequently "fudged."
But according to Bernal, they try to make it clear to the clients that answering the substance abuse questions is to help them, and it's not going to disqualify them from any services, unless it's a program where there's a requirement that they have to be sober for the last 30 or 60 days.
Since case managers frequently refer clients to other providers, could a concept like the "medical home" model be applied to case management? Do the medical providers and other agencies report back to the case manager who referred a client to them?
Bernal explains that rule number one is that the client must sign a release of information (ROI) form for every provider so that they have the legal right to communicate to each other about the client. Without that, confidentiality laws prohibit the exchange of information.
Usually, information sharing is instigated by the TPAN case manager, according to Hayes, though Bernal points out that when a client misses an appointment, that's when he's likely to hear from the provider, which he appreciates, and he can then follow up with the client.
Once a client has found a case manager, gone through the intake, and been referred to services, how frequent are their visits to the case manager?
"It really depends on the level of need," says Hayes. "Some clients are very self-sustaining. They may only need case management for specific referrals. Some clients have a higher level of need -- they have other issues going on. With those, we can see them as often as they need to be seen."
Is there an ultimate goal for case managers or does it vary client to client? Bernal says the first goal is to make sure the client has access to the services from which he or she will benefit the most. But "the end goal, in an ideal situation, would be that the client reaches a sort of 'graduation' point where they're self-sufficient and they pre tty much know how to handle all of this on their own."
For public health institutions, like the Illinois Department of Public Health (IDPH), success in self-sufficiency is quantified by medical standards -- is the client in care, adherent with their treatment, staying in care, educated about their disease, practicing safe sex, and addressing addictions?
Case management has changed over the years, Hayes explains. "It used to be an open-ended relationship, but now the idea is to make it much more time-limited." The case manager now helps clients reach a level of stability and then they move out of the system, whereas before, they might have had five- or 10-year relationships with their case manager.
"You can always come back into the system if your needs change," Bernal is quick to point out. "Somebody can graduate and then a year later, their needs are completely different and they can come back into the system and work on those new issues."
It's a fairly familiar picture -- the overworked, underpaid case manager with never enough time to do what needs to be done, surrounded by piles of paper and files, half-empty coffee cups, and bottles of Pepto-Bismol, but is it really like that?
Hayes laughs briefly and then says, "Yes. For me it's a balance between engaging with a client so that they really feel comfortable enough to open up and let me into their world and also doing the paperwork that needs to be done. It's a matter of balance and it's a challenge to maintain that."
A common frustration, says Bernal, is dealing with the effects of funding cuts. "There's such a need for housing and other services and you see them all being cut. Our ability to refer people or to get them the services they need is diminishing while the need is getting greater."
With demand going up, there is obviously a need for good case managers. What advice would they give an aspiring case manager? Bernal says, "It's very rewarding. There are so many success stories where the clients have so much to be proud of because they do a lot of work for themselves and it's rewarding to see someone go from point A to point B."
Hayes agrees and adds that, though she's not always good at it herself, self-care is important in helping a case manager to be more balanced. "It also makes you better for your clients," she says.
Giving clients the tools they need to gain access to the things they need in order to go forward and stay healthy is the foundation of case management. Both Hayes and Bernal say seeing their clients do that is the most fulfilling part of their work.
Hayes, who now serves as TPAN's advertising and grants coordinator, says, "You get to see someone progress from 'All is lost, I hate my life' to being actually stable and happy, re-engaging with the world, getting the mental health help that they need, seeing their viral load go down and their CD4s go up and knowing that they had a part in that, that they took care of themselves -- they were able to change their lives."