I always thought that I was 3 years away from death, which really is a comfortable little time span. But now that I'm 23 and I'm over the halfway point of my life (I was diagnosed at age 11) I see how silly and off-the-mark my early predictions were. Regardless of HIV, I have just always lived my life day to day.
Life does not end with an HIV diagnosis. If you have read some of the earlier sections of this book, you have probably figured it out by now by taking care of yourself and paying attention to your own needs, you can help to make sure that YOU HAVE A FUTURE, and a healthy one at that. If you haven't been planning or expecting it, your future can seem scary. As a child you may have dreamt about the life you would build: acting in movies, landing a job as the president of a successful company, becoming a concert violinist, or a poet. Testing positive might have caused you to let go of your plans for the future, or at the very least like you had to act quickly, or race against the clock.
Now that you have somewhat overcome the shock of your test results you have two options: you can move forward or stay in this gray zone. What has changed since you found out the results? Do you feel physically different than you did the day before you tested? It is possible that you do, but also very likely that you do not. Do you think differently? Most likely, yes. So the only difference between the day before your test results and the day after is that now it is confirmed, [one day] you are going to die [whether from HIV or not]. A trained professional or testing counselor has confirmed it, you are mortal, like all of us.
Set goals and believe in yourself -- no small tasks if you are doing one or both for the first time. Believing in yourself is something you have to learn from the inside out, and it TAKES TIME. A lot of young people say that learning to cope with their HIV status and their mortality helped them really start to live, to enjoy life fully.
Remember, it's OK to be overwhelmed when you think about your future. It's big. Really big, and it should be that way. It takes time to narrow things down. Once you've done that you can expand on that idea again, and learn about how to make it happen.
The key to this is identifying some of the goals you may have had before you tested HIV-positive. Did you hope for a family? A career? A sense of pride about your accomplishments? While many things have changed, and will definitely keep changing in the months and years to come, much if not all of this is still 100% possible. It will definitely take focus, however, as well as a lot of juggling and some good decision making.
I stayed in a hospital for almost two years. I was really sick and that's when I came to terms with it and started accepting being HIV positive. I thought I would have no future. Even when I got out of the hospital, I decided that I didn't want to suffer, so I thought I might as well kill myself and I started abusing my body. But I kept living and I was amazed. I kept wondering, 'Why am I still here? Let me die and be over it.'
I started getting better, gaining weight, and looking like myself again. Then I went into a support group and I saw a lot of positive people but none of them looked sick. At this point you couldn't even tell that I was sick. And I just thought to myself, 'All of these people are going to die, and they're happy.'
At the time I was about 19 and I thought to myself 'You mean I am going to live?' For about four years I had been planning to die, I'd been saving money to put up for my casket. I didn't even imagine living. It was a surprise. That's when the change came about. I started eating healthy and now I really feel like I'm living...
Whether you are returning to high school or college, taking the plunge and deciding to further your education can be a large task. Many schools requires a two, four, or maybe six year commitment and that may be unrealistic for you right now. Just remember, like everything we've discussed in earlier chapters, you can take as long as you need to figure things out. Don't rush into something because you are feeling pressure from your family, counselor, or case manager. There are a great number of resources out there for people of all ages looking to gain further education. Whether you do research in the library, at school, or with the help of a professional, try to be open about the possibilities. Keep yourself on track with a plan that seems realistic to you. For instance, look into things like cost, location, diversity, and size as well as curriculum. Does a four-year university seem overwhelming to you right now? Think about starting with a few classes at your local community college. Some schools have special tuition packages for returning students, offering them tuition packages if they are living with HIV. Look into this option at a school where you want to apply.
Job & Career
I graduated from college, HIV-negative, and I had plans to be an actor. I moved to LA, and started struggling for an agent, a Screen Actors Guild card, pictures, I was a waiter. Even when I left that behind, I knew that I still wanted to be in theater. And I've always had plans to go to theater school. Then, when the train hit (I tested HIV-positive) I was sent down another track. I started getting involved in the HIV-realm. I needed to cope and be around people who were positive and working through it, and so that's how I got a job doing HIV-related work. Now I'm at a place where I've coped and that original path is something I want to do again. I think getting into the HIV field when you're positive is a good choice, and it helps you realize that people are out there fighting it, but on the same note, I think it's good to ask yourself What would I be doing if I were HIV negative? Who am I?'
For me it was as simple as this: I wanted to be an actor or a clown, a performer.
I had wanted to apply to another school and I was told don't put [your HIV status] on your application, they won't accept you...' So, I didn't even apply. For me this was a big issue, because I want to know that I got into college not because I have a virus, but because I have a brain, because of my experiences in life and because of the quality of the person I am. I don't want to be a sympathy case or there to fill some quota or diversity experiment. This time I did include [my status] in my application, and I got in. But, part of me wonders if that has to do with sympathy. Either way, it's up to me to do the work.
When you enter any school, you are entering the HIV-negative world. When I was in [undergraduate school] I didn't think anyone there could be HIV-positive, or have issues at home. I thought we were all fine, and had come from picket-fence-homes and middle-class backgrounds. You assume these things because college is a self-contained environment. But on the same note, [if you're HIV-positive] now, you are different.
Having HIV has raised my consciousness. Living in San Francisco, I've been in an HIV-friendly community. Leaving that will be isolating, and I couldn't do it before now. I didn't do it when I wasn't strong enough to be isolated in it...Without having enough of the power inside to know that I was OK, I couldn't have done it. The stress of college is a huge obstacle, but a year and half has gone by and I'm a little more collected.
The struggle is to keep looking at the bigger picture of why you're there and what's important to you. I think fear is the biggest stumbling block. One reason young people won't go to college is because they think "Why should I go to school if I'm going to die anyway? What am I going to do with a degree if I'm gonna be dead in six months, one year, three years, ten years." But you can't look at life that way. You have to assume that you're going to be here for a while, assume that you're life is heading in good places. No one's guaranteed anything.
There is the work we do to make money, to get by or support ourselves, and there is the career we choose, the course our life takes. The two are very linked, and what you are passionate about may also eventually lead to a way to support yourself. However, your job will not always have anything to do with your career plans. There are a lot of tedious jobs out there that need to be done. Not everyone wants to pour coffee or take tickets at a movie theater, but don't underestimate the amount you may be learning in a 'pay-the-rent-job'. When it comes time to invest in yourself, to decide on a career path, there are a lot of things to take into account. For instance, what kind of person you are, what environment you work in best, what population you want to work with or around, etc.
Take the time to explore your options. Look into job fairs or employment agencies and talk to people about the pros and cons of the work environment, or the lives that people who work the job are able to live, the decisions they've made about the amount of money they want to make, the way in which it supports or does not support their beliefs or aspirations.
Once you've had the chance to do some searching , and have your mind on a possible job or career idea, here are some questions to ask yourself. (Questions borrowed, with permission, from Finding a Job for People with HIV by Barbara Kohlenberg.)
Do I know the exact title of the job I want? You may know what kind of work interests you, but do you know how the people who do that kind of work are referred to?
Do I know how to find the employers to approach about the job I want? Use the phone book, professional directories, trade journals, the Internet, and personal contacts.
Are there opportunities available in this field in the area I live in? Use the library, or contact employment agencies.
Do I know anyone who may have connections in this line of work?
Do I have enough time to spend job hunting?
Do I know what skills and experience are needed both to do the job and to be hired?
If No, do I know how to go about getting the experience? Whether that means doing internships, or other, entry-level positions in the field, or taking classes or pursuing a degree in a related area, are you prepared to make a commitment to gaining the experience and following through on the process?
Do I know how to describe my skills and background in an honest, yet colorful way?
Am I comfortable talking about my work history?
Do I know my rights and how to handle questions which violate them? Not all of these questions are very easy to answer. Making a career choice is at the core of your life; it should take a while.
When I found out [I was HIV-positive] I was 21 years old, I was in my last year of college and it seemed like a death sentence. At the time nobody really knew what the outlook was going to look like for people with HIV. They didn't have any drugs that were really very effective. So I thought I had maybe five or ten years to make whatever mark I was going to make on the world. I had big plans and ambitions and with only ten years to work with it seemed like kind of a limited project. So I finished out my semester, but I still had one more...And you can imagine if you only have so long to live it's not very interesting to sit there and listen to somebody talk about botany, or to do homework. So I dropped out. I fell into a lot of depression. Luckily I found someone who could be supportive and we began to develop a committed relationship...It was around that time that I was sitting there in my cluttered apartment one day watching TV, wasting my time away and I saw this commercial on TV for Positive Resource, this agency for people with HIV.
I thought maybe [at an employment agency structured specifically for HIV positive people] they would at least listen to what I want, and understand what I was experiencing but at the same time, I was thinking 'Just give me a job, any job. I don't want to have to go out into the big wide world of resumes and interviews without any support.'
I think if you're young, old, HIV-positive, HIV-negative, looking for a job is a self-esteem issue. I came in here and I had been working part time at the Cannabis Buyers Club, doing one-on-one work with HIV-positive people. It was [the job agency] that caused me to realize that I had helped people, that I had worked with people with HIV, and maybe I could do more. I didn't have a degree but they said That's fine. You've got a lot of skills.' They put a job description in front of me for a position as a case-manager with Catholic Charities. I had done some advocacy work with my partner who didn't speak any English and I had helped him get set up with some housing before. I wrote a very personal cover letter about that experience and I really laid my heart out but I guess that's what they wanted to see, somebody being honest. They gave me an interview. I had some good references and they offered me the job. To me this was legitimizing.
You can change the job to fit what you want to do with it, but there are also a lot of things in yourself that you will have to change to fit in [to the job] first. It takes being confident about your own abilities. Don't feel like you have to prove yourself right away. There is time for you to adjust and absorb what is going on around you. If you have faith in yourself, it's a lot easier to be patient, and to wait to see where your skills can be most useful.
For a number of young people, planning a family is key to planning their future. Whether you are male or female, gay, bisexual, or straight, you have probably, at one point, wondered about what it would be like to be a parent. It is one way that people can feel loved, needed, and trusted, to help shape the life of another person. While testing HIV-positive has most likely affected those thoughts, they don't have to erase them. The fear of passing HIV on to a child is a large part of why many people choose not to have children if they are positive.
There are a number of things you should know about how to have an HIV-negative baby, even if his/her mother is positive. As you may have heard there is around a 25 percent chance of perinatal transmission (passing the virus on during pregnancy) of HIV if a woman is not taking medication. With medical intervention that chance is much smaller, around 8%.
The virus has been shown to be passed on through the fluids that are exchanged during the birth process and through breast milk. One way to lower the risk is to have a cesarean delivery (one in which the baby is removed surgically through the mother's abdomen.) However, cesarean deliveries are also potentially dangerous to you and your baby and you should inform yourself about the risks. For a positive man who wants to father a child, there are also recent scientific advances that may allow a man's sperm to be 'washed' or to remove the HIV virus from his semen. These techniques are still being tested, however, so keep your eyes and ears out for more information!
Whether you choose to become a biological parent, or to adopt a child (something that is also becoming more and more possible for HIV-positive people) parenting is a huge commitment. Hopefully planning to have a baby is a step you will only take after many other steps to take care of yourself. It is a point when it is especially important that you are receiving the best care you can from a good doctor.
When will I stop being a "Youth?"
Aging out of youth services, or becoming an 'adult', can be hard. Not only do you gain a lot of responsibility, but you may feel that you are about to lose the vast majority of your support system if you begin to establish yourself and act like you have it together.
What do I need to know about disability benefits?
There seem to be two common approaches to aging out. The first is sink or swim. When you reach that miraculous age (whatever it is) that makes you able to fend for yourself, navigate difficult bureaucracy (can we say Housing Wait List?) and get by with minimal support, out you go. This theory is adhered to despite the fact that this is the same person who, yesterday, was crying under someone's desk because Riki Lake was a little too stressful. All too often, adult AIDS agencies don't know what to do because no one's talked to them about this issue either. Sink or swim sucks.
Then there's the Klingon strategy. You know, like cling-on. This is the notion that people just won't grow up and will never be capable of taking care of themselves. The best example of this is the constant revision of the ceiling for youth. First it was 18, then 21, then 24, now you know, it's all about self-identification, which is OK with me. But at some point it's a little disconcerting to sit in the same waiting room as a four-year old waiting for your Viracept.
I woke up one day and realized that I don't want to miss out on my childhood, but I don't want to miss out on being an adult either. I found the support to make this transition before I was 25. For [this] I know I am truly blessed. So next time you go to the agency (whichever it is) you might invest some time in finding out what happens when you grow up. And perhaps a little more time in preparing for it.
Dealing with benefits issues may feel confusing and overwhelming. These feelings are real for many people living with HIV because the information and the processes to obtain benefits can be very confusing and overwhelming! Additionally, benefits programs change so often that even benefits counselors and policy advocates have a hard time keeping up!
Getting informed about these programs will help you maximize the benefits available to you and to take control of your financial future. Most importantly, if you can get the help from a benefits counselor, a social worker, a case manager, or a peer advocate it will be much easier to walk through the benefitsí maze and succeed in obtaining benefits.
The following list outlines the most important cash and health insurance benefits that may be available to you as a young person living with HIV/AIDS in San Francisco, California. Programs' eligibility may vary from county to county; federal programs are administered differently by different states. Again, it is important that you connect with local agencies or advocates that can provide you with appropriate benefits' information and assistance.
The County Adult Assistance Program (CAAP), commonly referred as General Assistance or GA, provides a cash benefit to county residents with little or no income who are not living with dependent children. In San Francisco, the program is administered by the San Francisco Department of Social Services.
To qualify, you must be at least 18 or emancipated by the courts. CAAP has been recently re-organized under the mandates of welfare reform and includes four different programs: benefits' information and assistance.
The Supplemental Security Income Pending (SSIP), for individuals who have medical verification that they have a disability that is expected to last at least 12 months or more. A letter from your doctor stating your HIV condition makes you disabled to work for one year or more should be sufficient to exempt you from employment mandates.
The Cash Assistance Linked to Medi-Cal (CALM), for individuals receiving Medi-Cal benefits due to old age or disability. The stipend is $364 per month. CALM applications are taken at the Medi-Cal office.
The Personal Assisted Employment Services (PAES) pays $355 stipend per month and requires you to participate in employment activities (unless you present medical proof that your HIV/other disabling conditions are expected to last 12 months or more). If you complete three months of work experience, you may be able to receive job training and career counseling, GED preparation and English as a Second Language classes, vocational training and rehabilitation, and housing search assistance, among other services. If your HIV or other disabilities are expected to last less than 12 months, you can be temporarily exempted from the work participation requirements.
General Assistance (GA) remains as the county's safety net program for those who do not qualify for CALM or SSIP or who choose not to participate in PAES or are sanctioned from PAES. The maximum grant is $294, and in exchange for the grant, you must participate in 'workfare' or an acceptable substitute.
California State Disability Insurance (SDI): If you have left your job (or will need to leave your job) because you are unable to work due to HIV-related symptoms or mental health issues, you maybe eligible for California State Disability Insurance (SDI) for up to one year. SDI will pay you weekly cash benefits, up to a maximum of $490 a week, if you have been contributing to SDI through your payroll deductions. Your doctor must certify your disability due to HIV/AIDS on the SDI application (applications are available at most clinics and doctor's offices). There is a seven-day waiting period; processing of the payments may take between seven to fourteen days.
Supplemental Security Income
Supplemental Security Income, most commonly known as SSI, is a program administered by the Social Security Administration (SSA) to assure a minimum level of income to people who are aged, blind, or disabled with a limited 'on-the-books' work history or who are low income and have few assets. If you get SSI, you are automatically entitled to free Medi-cal benefits.
All US citizens and some permanent legal residents qualify for SSI. Beginning November of 1998, the State Cash Assistance Program for Immigrants (CAPI) will begin to provide assistance to certain aged and disabled legal immigrants unable to get federal SSI. (If you are an immigrant awaiting permanent legal residence, you should always consult with an immigration attorney before applying for government benefits.)
The amount of the SSI benefit varies according to your household living arrangements and other sources of income. In California, it can reach a maximum of $765 a month, if you have no cooking facilities.
To qualify for SSI (the same is true for Social Security Disability Insurance, see below) you must prove that you are 'disabled' according to Social Security. Proving disability can be a very difficult and strenuous process. According to SSA, a 'disability' is a severe medical/mental condition that prevents an individual from working for more than 12 months. If you are living with HIV/AIDS, you must show medical documentation of the following:
- you have been diagnosed with 1 out of 41 AIDS-related conditions, usually very severe OR
- you have been experiencing HIV-related symptoms (including fatigue, insomnia, depression) or other medical/psychiatric problems that impact your daily functioning to the point that you cannot work full-time.
If you are using licit or illicit drugs, you must make sure that your doctor states in his letters that you would be disabled by HIV/other medical/psychiatric impairments even if you stop using drugs and/or alcohol.
Additionally, Social Security may use different criteria if you are a very young adult, and you have no work history. In that case, you may want to obtain help from advocates experienced in helping disabled children. In general, building a disability claim is not an easy task! Individuals who apply without an advocate or a legal representative are almost always denied. You should always try to seek assistance from an experienced benefits provider!
Social Security Disability Insurance Benefits (SSDI)
Social Security Disability Insurance (SSDI) is the other disability program administered by the Social Security Administration. Most people qualify for this program by working 'on-the-books', paying Social Security taxes, and in turn, earning 'credits' toward eventual benefits. The number of credits you need to qualify for disability depends on your age when you become disabled. Nobody needs more than 40 credits and younger people can qualify with as few as 6 credits. If you have been working 'on-the-books', and want to find out how many credits you have accumulated, you may go in person to any Social Security office to ask for your earnings' records and an estimate of your benefits.
To be eligible, you must also qualify as disabled (see SSI discussion above). It is to your advantage to file for benefits as soon as you become disabled. However, you must be disabled for five months before you will be entitled to receive SSDI checks. Recipients of SSDI are eligible for Medicare benefits two years after payments began.
If you are under 18, you may also qualify for dependent's benefits on the record of a parent who is receiving retirement or disability benefits, or on the record of a deceased parent. If you are 18 or older and became disabled before age 22, you may also obtain dependent's benefits.
Can I work/return to work and preserve my SSI or SSDI?
The quick answer is yes. Social Security has Work Incentive Rules that allow you to preserve cash and medical benefits while you attempt work entry or re-entry. SSDI and SSI have different rules, though, and prolonged work attempts may prompt Social Security to review your disability. Again, try to seek assistance from an experienced benefits provider to help you assess work entry or re-entry's benefits and risks.
AIDS Drug Assistance Program (ADAP)
ADAP is a federally funded, state-administered prescription coverage program intended to cover all or some of the costs associated with HIV-related medications. To qualify for no-cost ADAP, your income should not exceed $33,000. The program allows people who are uninsured, on Medicare, or who have insurance with insufficient prescription coverage. You can enroll with ADAP at many local community clinics or may call one of the agencies in the Resources chapter for information.
Medi-Cal (California Medicaid Program) /Medicare
Medi-Cal is a health insurance program that pays for a comprehensive range of medical services for individuals and families with low-income and resources. Medi-Cal, however, does not cover everyone who is poor. To be eligible, you or your family must meet Medi-Cal property, income, institutional status, residence, and citizenship requirements.
All US citizens, legal residents, and immigrants 'under the color of law' qualify for full-range Medi-Cal. Undocumented immigrants are eligible only for emergency and pregnant-related services. If you are an immigrant awaiting permanent legal residence, you should always consult with an immigration attorney before applying for government benefits.
In general, you may qualify for Medi-Cal if:
You are receiving SSI.
You have dependent children and you are a CalWORKs recipient (formerly AFDC).
You are disabled but your income is too high ($620 or more a month). Any money in excess of $620 is your share of cost, and you will be responsible to pay the difference for any month you use your Medi-Cal card (check with an advocate about spend-down options that will reduce your share of cost).
You are pregnant and/or have infant children and your income is at or below 200% of the federal poverty level.
You are between the ages of 6 and 19 and your family income is at or below 100% of the poverty level.
You should not confuse Medi-Cal with Medicare. One must apply for Medi-Cal and meet the different eligibility criteria. Medicare, on the other hand, does not have any income or resource criteria. Medicare is a health insurance program for SSDI recipients (see SSDI above) who are 65 or older or disabled (including people living with HIV/AIDS).
Care-HIPP and Medi-Cal HIPP are state programs that can help you pay health insurance premiums in the event that you must leave your job due to disability.
Care-HIPP can pay your premium for up to 12 months while your disability income is to high to qualify for Medi-Cal HIPP (usually, while you are collecting state disability and Social Security for the first year of your disability).
Medi-Cal HIPP pays your health insurance premiums so you may continue to use your private insurance instead of using Medi-Cal. You must be eligible and enrolled in Medi-Cal to access Medi-Cal HIPP.
Employer-based benefits can truly strengthen your disability package. Many employers offer private disability benefits that may continue paying a portion of your pre-disability earnings (your salary before you became disabled) for a limited period of time (Short-Term policies) or until your normal retirement age (Long-Term policies) assuming you continue to be disabled.
It is important to read your individual policy. Policies vary in how much they pay, how they define disability, and whether or not they allow you to try work while keeping your disability checks.
Private Health Insurance
Employers may offer you health insurance that will pay for your medical related costs, including doctors' visits, hospital stays, and prescription coverage. Private health insurance policies vary in type (the most common ones are the HMOs, or health maintenance organizations), in the array of services they provide, in the choice of medical providers, and in the cost of the premium and deductibles.
If you have choices, it is always important that you compare the different options and see which one will be most appropriate for your particular medical/mental health needs. As a person living with HIV, it is very important to check whether the particular policy covers prescription medications, and if so, how much it covers.
In trying to figure it out your particular private disability package, it is always a good idea to seek assistance from an experienced benefits provider before you leave work due to disability. It will allow you to plan in advance and not miss any benefit you maybe entitled to. In fact, as soon as you start a new job that offers benefits, you may seek pre-disability counseling, to learn about your future options early on.
This material was prepared by Laura Carcagno Guzman, Outreach and Training Coordinator for Positive Resource Center. We want to specially thank People with AIDS Coalition of New York for letting us use some excerpts from their Newsline April 1998 Issue, Benefits and Entitlements.