Since the beginning of the HIV/AIDS epidemic, advocates, consumers and providers have argued that comprehensive, high quality, health care for people living with HIV/AIDS (PWHAs) is a basic right. To achieve that goal, the New York State Department of Health AIDS Institute built an extensive system of HIV care largely utilizing the State's Medicaid program. Approximately 85% of persons with HIV receive health care through Medicaid during the course of their illness.
New York's Medicaid program is truly one of the most comprehensive health care programs in the country for PWHAs. Covered benefits and services include primary care, specialty care, inpatient hospitalization and emergency care, mental health and substance abuse treatment, dental care, prescription drugs, and durable medical equipment like wheelchairs or walkers.
There are many positive aspects to New York State's Medicaid program. Consumers and providers agree that the covered benefits and services are robust. There are literally thousands of providers who accept Medicaid. As good as the Medicaid program is, however, both consumers and providers have identified issues and concerns that impact the ability to get medical care as well as to deliver medical care. Some of the key issues and concerns are summarized in the table below.
Key Issues and Concerns With NYS's Medicaid Program
- Only one medical service per day per facility is covered by Medicaid.
- Providers often don't talk to each other.
- It can be difficult to get medical documentation.
- Lots of Primary Care Providers aren't specialists in HIV/AIDS.
- Many Specialty Care Providers that take Medicaid don't know about HIV disease and/or aren't willing to treat PWHAs.
- It can take a long time to get specialty care appointments.
- Medicaid co-pays and visit thresholds (or limitations) can be problematic.
- Strict Medicaid rules for medical decisions don't take into account the full range of needs.
- Complaints often don't get resolved.
- Problems or issues that arise after Medicaid offices are closed (nights and weekends) must wait until the next day or Monday morning.
The New York State Department of Health AIDS Institute, advocates, and consumers have sought ways to address these issues and problems. But the reform options that are available within the regular Medicaid program are limited, and significantly impacted by philosophical changes in state and federal governments as well as economic forces.
For more than ten years, these groups have collaborated on the development of a new health care option for people living with HIV/AIDS who have Medicaid. In 2003, that new option became a reality. This newest option is called an HIV Special Needs Plan (SNPs -- pronounced "snips"). SNPs reflect an innovation in health care, maintain the full package of Medicaid benefits, and seek to strengthen the health care delivery system by addressing these persistent issues and concerns. SNPs are not just another form mainstream managed care program -- they are new and unique.
Mainstream Medicaid Managed Care
The most important thing to know is that SNPs are not mainstream Medicaid managed care programs. Those programs were created to address the needs of the 4 million people who qualify for Medicaid in New York State (2.7 million in New York City). These programs don't guarantee consumers Primary Care Providers (or PCPs) with HIV expertise, nor do they contract with the full range of care models that are needed to appropriately serve PWHAs. Mainstream Medicaid managed care programs have a 9-month lock-in period, which means that you can't change programs during that timeframe.
Even though PWHAs are exempted from these programs, some PWHAs either chose to enroll, or were auto-assigned to a program. Getting out (or disenrolling) from these programs has historically been problematic for PWHAs.
The vast experiences of PWHAs in these mainstream Medicaid managed care programs were not favorable. Chief consumer complaints with the mainstream Medicaid managed care program included the following:
- PWHAs often felt they knew more about HIV disease than their Primary Care Provider (PCP) knew about HIV/AIDS;
- It was extremely difficult to get specialty care appointments;
- Mental health and detox services were difficult to access; and
- Many of the HIV providers used by PWHAs weren't in the various program's provider networks.
As a result, many medical providers and case managers worked to get their clients disenrolled from these mainstream Medicaid managed care programs. But the disenrollment process with mainstream programs, which isn't expedited, was a headache for most and a nightmare for some.
A Special Needs Plan, or SNP, is a comprehensive health plan for PWHAs. Being "comprehensive" means that SNPs address both medical needs and non-medical issues, like supportive services, housing, entitlements, legal concerns and transportation.
SNPs offer Primary Care Providers (PCPs) who are specialists in HIV/AIDS, a broad range of medical specialists who agree to treat PWHAs, and most important "care coordination" of all services that an individual is receiving. This means that a PWHA's care team is aware of, and informed about, all the services that a client is receiving, be it case management, detox, mental health, medications, or specialty care services.
SNPs offer state-of-the-art services through "provider networks" that include AIDS Designated Centers, HIV primary care programs, community-based HIV programs, and even private practice doctors' offices. These provider networks include virtually all the specialty services that a consumer might need. If for some reason a SNP doesn't have the service a consumer needs, they will find it and make it available to the PWHA.
PWHAs who have Medicaid, and their dependent children up to age 19 regardless of their HIV status, are eligible to join SNPs.
SNPs require that all providers maintain member confidentiality and adhere to Article 27F of the Public Health Law. SNPs work with their members to identify the best way to communicate with them while protecting their confidentiality. Some SNP members ask that health plan representatives only identify themselves as "calling from your health plan," when leaving messages. Other members provide alternative mailing addresses where all mail is sent. SNPs work with their members to address confidentiality concerns and needs.
SNPs also move away from a passive health care model where people often drop out of care to an assertive community treatment model where your health plan becomes your partner and advocate in ensuring that you can access all the care and services you need. SNPs will also work with you to address barriers so that you can stay in care, which includes resolving transportation issues.
And lastly, SNPs were also designed to protect the comprehensive HIV care system in New York. As more people learn that they are HIV-positive or living with AIDS, and as PWHAs continue to live fuller, longer and productive lives, the demands on the system will only increase. And as PWHAs live longer and develop additional health conditions that require treatment, such as heart disease, the care needs of PWHAs will only continue to expand. SNPs have been designed to meet all of these challenges.
- Members get all Medicaid benefits
- More than one Medicaid Service per day
- HIV Specialist PCP
- Comprehensive network of providers
- Care Team
- Plan assistance available 24/7
- Member Services/Care Coordination
- Expedited Decision Making
- Access Standards for waiting times and appointments
- One Stop Shopping options
Benefits of SNPs
PWHAs are faced with serious issues and difficult choices all the time. These challenges don't stop at 5pm. When consumers need information and assistance, they need it now, even if it's on the weekend. SNPs provide their members with assistance 24 hours a day, 7 days a week. Members can call a toll-free "1-800" or "1-866" number to get the help they need, including prompt follow-up with any concerns or problems.
PWHAs are used to having to make multiple trips to their health care providers in the same week. In SNPs, members can get as many medical services as they need, and on the same day! To consumers, this says, 'We value your time. And we want to make it easy for you to get the care you need.' To providers, this says, 'We want you to offer all the care that your patients need. And we'll pay for those services, even if you deliver them on the same day.'
Living with HIV/AIDS is truly complex. There is no one right way to live with HIV/AIDS. That means that there are lots of options available to PWHAs. But who can you call to get help with exploring those options? If you are in a SNP, you can call Member Services or ask to speak to your Care Coordinator. These individuals work with you, and your providers, to make sure that:
- You know and get all the Medicaid benefits that you are entitled to;
- You can get timely appointments, or help when a provider tells you that you must wait a long time for an appointment that you need or want sooner;
- You get as many medical services as you need, and on the same day.
- Your medical providers share appropriate clinical information to advance your care;
- Your case manager gets all the medical documentation to assist you with benefits, including SSI, SSDI, or supportive housing through HASA;
- You can find a new HIV PCP when you need one, or a Specialty Care provider that is right for you; and
- You can express your concerns when you're dissatisfied, and someone will look into it and get back to you.
In the first year of the program, 1,000 people joined a Special Needs Program. Since January 2005, another 500 people have chosen to join a SNP. Currently, there are three SNPs operating in New York City with more than 1,500 members getting services and all the other SNP benefits (see SNP Benefits chart) through these comprehensive and specialized health plans:
|Health Plan||Member Services Toll Free Number|
|MetroPlus Health Plan -- Partnership in Care|
|New York-Presbyterian System SelectHealth|
While SNPs coordinate all care and services, they don't directly provide medical services and case management. All SNPs contract with a large group of experienced providers to meet all of their member's needs. This includes not only providers experienced in the treatment of HIV/AIDS, but also specialty providers for other care needs such as dermatology, cardiology, ophthalmology, OB/GYN, pediatrics (for your children) or neurology. These doctors and specialists, nurses, case managers, hospitals, labs and other health care facilities make up what we call their "provider network."
All SNP members have access to this comprehensive network of providers, which includes sub-specialties, hospitals, community health centers, mental health clinics, AIDS CBOs, and private doctors' offices. You can find a list of them in each SNP's published Provider Directory.
If you don't have a Provider Directory, call the SNPs toll-free Member Services department to get a copy. In addition to answering questions about which providers are in their network, SNP staff are available to help members arrange appointments and followup when members have questions and to answer questions from those interested in membership.
Renee Martinez, Chief Operations Officer of the Vida Care health plan, gave an example of the kinds of service offered by SNPs. "At Vida Care, one member had developed a keloid (or growth) on her face," explained Ms. Martinez. This member wanted to have it removed. Her HIV Specialist PCP wanted it removed. Medicaid Fee-for-Service considers that type of surgery to be 'cosmetic,' and therefore doesn't pay for it. But when our Medical Director looked at the situation, he agreed that not only was it a real medical need, removing the growth was a mental health, self-esteem, and quality of life issue. And Vida Care approved the outpatient surgery to have the growth removed! That's how SNPs work with all your providers and look at the complete picture of a member's medical and non-medical needs to make informed decisions about your care."
Customer service is also at a premium. "At SelectHealth, Member Services staff are experts at helping members with their needs whether, answering questions, solving problems, navigating the network, or securing a wheelchair that has been ordered by their PCP," states Eli Camhi, Executive Director of New York-Presbyterian System SelectHealth (SelectHealth). "And we accomplish this quickly and in much less time than compared to Fee-for-Service Medicaid."
SNP provider networks include credentialed specialists in HIV care. "But living with HIV is not only about HIV care. Persons living with HIV may be at risk for heart disease, cancer or other diseases. SelectHealth's provider network includes increased access to a wide variety of specialists in HIV as well as other fields of medicine," explained Mr. Camhi. "And when you need help, our Member Services staff assist with making appointments, securing transportation and coordinating with your primary care provider."
But what if you have a problem after 5pm or on the weekends? "Many PWHAs will wait until Monday morning. Others will go to the nearest Emergency Room," stated Andrea Lieblein of MetroPlus Health Plan -- Partnership in Care (MetroPlus). "And most PWHAs will have some level of anxiety or worry until they get medical care, help or answers that they need. But at MetroPlus, even on a Friday night or over the weekend, we're available to help resolve issues and problems to make sure our members get the services that they need. And if a member has difficulty get medications on the weekend while the Medicaid office is closed, we'll work with a pharmacy and the member to resolve eligibility issues or payment problems -- on the spot. This kind of customer service isn't available in the fee-for-service Medicaid program."
Are SNPs Right for Me?
Making changes -- especially with health care -- can be scary, is rarely easy, and often requires more information, close examination and serious thought.
An important question to ask when looking at SNPs is, "Are my providers a part of a SNP's network?" No one should ever be asked to sever a provider relationship that's working for them. So if your providers aren't in a particular SNP's network, then that SNP is probably not for you. If you don't have an HIV Specialist Primary Care Provider, or one that you're satisfied with, you can use SNP provider directories to identify potential providers.
Since there is no one right way to live with HIV/AIDS, it's important to check into health care options for yourself. If you see value and benefit in exploring SNPs, there are numerous resources to assist you in the process of getting additional information. But ultimately, the decision is yours! SNPs aren't for everyone, but they be "just right" for you!
There are a number of ways to explore SNPs further, and get the information that you need to make an informed choice. Some PWHAs want to know what their providers think, before making a choice. It's a good idea to speak to your HIV Specialist PCP about which SNPs he or she participates in. You can also find out which SNPs your HIV Specialist PCP participates in by calling New York Medicaid Choice at 1-800-505-5678.
A great way to learn more about a SNP is to call the individual health plan directly (see box above with phone numbers). Find out what special programs are being sponsored this month, or where you can go to talk directly with a plan representative about their SNP. Or, you can find out more information about SNPs by visiting the NYS Department of Health -- AIDS Institute's website at www.health.state.ny.us/nysdoh/hivaids/snps/plans.htm.
Doug Wirth, MSW is the former Executive Director of the People with AIDS Coalition of New York, a past chairperson of the New York AIDS Coalition, a member of the NYC HIV Planning Council, and a senior faculty member of the American Psychological Association's AIDS Hope Project. Doug is currently an independent health care consultant and maintains a private practice.