Surviving and Thriving with AIDS: Hints for the Newly Diagnosed Michael Callen, Editor

©1987 PWAC NOTE: THIS IS OLD NEWS, posted for historical research only. The medical information herein is extremely outdated!

USING SYSTEMS TO YOUR ADVANTAGE

DISABILITY AND SOCIAL SECURITY
A Conversation between Michael Callen and Bob Herman

[EDITOR'S NOTE: The following are excerpts from a conversation between Michael Callen and Bob Herman. A complete transcript of this series of conversations will be published in a forthcoming pamphlet.]

MIKE: The psychological effect of being on disability can be weird for some people.

By the way. I called GMHC because I had been under the mistaken impression that you couldn't work or earn any income at all, and I'm on SSD and they tell me at GMHC that I am entitled to work for 9 months in a year, make as much money as I wanna make or can make, but as long as I don't work a day over 9 months, I can keep everything including my disability. But if I work more than 9 months in a calendar year, then they assume that I'm no longer disabled.

So what we're saying--we're not financial aid counselors, but you may have many mistaken assumptions about what you can and can't do and what disability does and doesn't mean, and you need to speak to someone like at GMHC financial counselling to know what is and isn't possible.

I think it's important, as you said, to know that if you're on disability it doesn't mean you can't go off it and get back on it. So, if that is a psychological issue for you--that you don't wanna feel that your work career is over, disability doesn't necessarily preclude that.

BOB: I think it's also important to be aware that what happens is once you have been declared disabled, that there are advantages, so to speak, such as that you are now protected in a lot of ways by law just because you are disabled, which preclude any problems that come up because somebody wants to give you a hassle because of AIDS or because you are homosexual.

Before New York City finally passed its gay civil rights bill several months ago, until that was done, I was guaranteed not to be discriminated against in housing, jobs and so forth because I was disabled--not because I had AIDS, but because I was disabled.

So getting declared disabled in that respect has advantages which can make life easier. It's not a question of whether it should or should not be that way. I'm not trying to argue--you shouldn't be discriminated against in any case.

You also should not feel like you are ripping off or taking advantage of the system by doing this, because the money that's paying--the financial assistance and the services that are paid for because you are disabled--these are monies that you've been paying for when you worked. This is what the social security monies were taken out of your paycheck for. So you're not taking from somebody; you've been paying into the system precisely for situations like this.

So you should not in any way feel like you are getting something for nothing. You've been working and you've been putting money into this account.

MIKE: What you get will be based in many cases on what you put in. Meaning, the more money you earned, the more was taken out for social security and therefore the more you are eligible to make once you qualify for social security disability.

I want to emphasize another point, which maybe we've already said, but I want to provide a little example. I don't think we would encourage anybody to take on this bureaucracy by themselves--to call up the number and have them send you the regulations and stuff and try to figure it out, because it is incredibly complicated. And also, because it's so complicated and so slow, very bizarre.

For example, we just talked about what you get will be based on what you put in. That's true. I paid a lot of taxes. I used to make a lot of money as a paralegal and legal secretary. So my disability is quite high. It's about as high as it can be--it's up near the max.

The irony is that the size of my disability payment happens to disqualify me for Medicaid. In other words, according the bureaucracy, I make too much on disability to qualify for Medicaid. Medicaid will only kick in for me if I spend down in medical bills in a particular month to the Medicaid limit. So, in my case, I would have to pay, in any given month, the first $300 of my medical bills before Medicaid would kick in for the next month.

So you see, the bureaucracy can be incredibly frustrating; but you must go through it.

BOB: And that's why you should be going through it when you have the energies to go through it--and that's why you shouldn't do it alone; you should let the experts from GMHC help you do it.

Now, after your doctor fills in your M-11-Q and GSS sends somebody to, I guess to visually make sure that you are ill, you then must qualify for actual services. The state awards the contract to a particular company. It was Red Cross up until December, when the contract ran out, and over the course of dissatisfaction, they awarded the new contract to a company called VNS--Visiting Nurse Service. So Red Cross no longer handles that.

Now what Visiting Nurse Service does is, their job is to make sure that you are receiving all the services that you need that are covered by the Medicaid. A lot of services, such as having an actual home attendant or health aide come to your home--they don't actually have the people that they send out.

They in turn subcontract to another company, like Partners in Care or Homecare America or one of dozens of--what they really are are temp agencies, like for office work. They have people they send out, whether it be for a few days or on a permanent, regular basis, depending on what has been determined to be your needs.

The VNS also qualifies you for a visiting home nurse. What this means is that a nurse will come to your home as many times a week or a month as the two of you decide is necessary. In my case, I have a nurse come once a week. There doesn't seem to be the need for anything more, and yet once a week to check up on my lungs, to take my blood pressure and do the standard work-up.

The nurse will also act as a liaison between you and your doctor, so if she sees anything that she feels is of concern, she will call the doctor and discuss it with him or her.

Any supplies that you need--whether it be a wheelchair, a geriatric chair for your home, special pillows to stop you from cutting off the circulation while you're sleeping--little gadgets that they have so you can grab objects out of your reach, like at the supermarket--little like silly putty to exercise your fingers with. There is an incredible range of supplies and services that are all available and all free, you know, once you've been qualified. And the nurse is the one that will order it for you.

They will also send a physical therapist--all paid for. If you need some type of ambulette or ambulance service to and from a medical appointment or to and from a hospital, you call VNS--the nurse there--and they arrange it. It's all taken care of; it's all paid for in the program.

Be aware that VNS also has a 24 hour 7-day-a-week number, so if you have a problem in the middle of the night, or if you are in the hospital and being discharged or trying to get admitted on the weekend, VNS will make the arrangements for you. They even have a consulting doctor.

So that if you can't leave your home and you want a doctor, they have a doctor who's under contract and he will come and make a house call to you. And you can either use the doctor as your primary physician or that doctor can again act as a liaison and call your doctor and discuss things with them.

The benefits and services that come out of this are really incredible. They'll supply you with egg crate foams. I have problems with my feet, so it's something to put my feet on that's soft.

They'll give you full bed-sized pieces--a huge package of chucks. Chucks are those things that are like a little plastic bag with an absorbent front, like they use in hospitals, so that you can either sleep on a bed--if you have a problem and you want to protect the linens and the mattress--or sometimes if they're doing some kind of treatment at home, you know to put underneath your arm when they're taking blood--things like that.

They will arrange if appropriate for labs to come and draw blood and so forth--from your home, which I get regularly. And again, all this is covered once you're cleared as eligible for the services. And it has made dealing with my situation infinitely easier. Where to go to a hospital or doctor otherwise would be a major activity for me for a day, to have somebody come in here and within 10 minutes be in and out and have taken the blood--and then they call my doctor with the results...I can't tell you how invaluable it is to me.

I'll take a little step backwards here. Remember that these are...when you're dealing with these places, do remember they are City agencies and I don't want to give the impression that they're all good or all bad, because there are so many wonderful services they supply, and yet, be aware, it's a City agency and you are dealing with people.

You will have a lot of difficulties and confrontations and you really have to learn how to approach them and manipulate them to get things done. Sometimes it's incredibly frustrating.

If they send a home attendant or a health aide and they're not doing things appropriately and you don't like them, or if you're not comfortable with them in your home, you call and tell the agency and they have to immediately replace them with somebody else.

I have been through many of them myself--many of them. And they must just keep trying to satisfy me. Now, the people that they actually send to your home, I think, the most honest thing to say in terms of--especially the home attendants, who are the less qualified personnel--they're not paid a tremendous amount of money.

You have to remember that the state budgets money which they give to VNS which in turn subcontracts out to the place that's going to send them to you, so by the time it gets to the actual person, the salary that the person you're actually having to deal with...there's not a lot of money for them. And there is no question that a lot of times somebody's sent that is a disaster.

I've had people sent here that are on drugs; I've had people who have drank half my liquor cabinet. I've had credit card frauds, where I've had to go through signing affidavits because they were not my purchases. People that do not understand the real seriousness of AIDS in terms of being sanitary and washing, so people who do not grasp the concept that they must wash their hands when they come into your hospital--they must wash before and after every time they handle food for you--how that a light cleaning over in your apartment is not satisfactory--bathroom and kitchen especially must be constantly kept extremely clean.

Most of them will not take the initiative to take care of your house on their own; you will have to say "the bathroom needs cleaning; the kitchen needs cleaning." And sometimes it's very difficult when you're not feeling up to it. And sometimes it helps to have a friend stop in and make sure that the right thing is being done. A lot of them will go sit down in a chair and go to sleep. And if you don't ask them to do anything, they won't do anything.

Fortunately, at this point in time, I've gone through enough people that I've managed to weed out those types and the people who are helping me now are all quite wonderful and very helpful. And yet, even so, they are human beings and they can't think of everything all the time. And one of the hardest things to do is to get somebody to shop for you--to buy the particular food items you like in the sizes and quantities that you need. Because they go there and if exactly what you told them you wanted is not there, they have to make a choice to buy something else or not buy it.

So you have to work with them on that level too. But you do not leave wads of cash and credit cards lying around the house. You do not leave, you know, valuable little items that people can easily pocket around the house. Certainly, not until you've developed a trusting relationship with them. And you feel that they have a concern for you.

That's very important. There are too many times that it can happen. The advantage of being in a studio apartment is that basically you're around to see things. If you're in an apartment where you close your door and go to sleep, you know, you don't know what's going on out there. And it does go on, and you really must be careful about that.

MIKE: I've met some really, really wonderful home attendants--who've gone well above and beyond the call of duty. Who are genuinely solicitous of how you are feeling and...

BOB: Absolutely.

MIKE: It's like everything else. People are human and there's a lot of luck of the draw. There are some really wonderful people. And it sounds like this is echoing what you say about the hospital. It's another situation where you have to be assertive. You have to take control.

BOB: If you're not getting what you want, you have to ask for it, at first in a very pleasant but firm way. And if at a certain point you've made several attempts to be very clear about what you want and what you need and you're still not getting it, then you have to have a person replaced.

Here in New York City, there is a department of the city, through HRA, called the Crisis Intervention Service. And the purpose of this department is to make sure that the services you're supposed to be getting you are getting. Because the City's paying for it, they wanna know if the patient is not getting it. And they will do like every three to six months a review of your form M-11-Q and they will assign you a representative to keep contact with that if you're not having success in getting the appropriate services that are due you, they will handle the stress of dealing with the company.

In other words, you shouldn't have to go through all the stress of phone calls, and the headaches and the arguing and all that. If that comes up, this is the place designed for you, so that you can focus your energies on more productive and more healing things than with the bureaucracy. So that's a very important agency to write down in your little book and keep in mind as a check on VNS and the services you're getting through them.

OVERVIEW OF SOCIAL SECURITY DISABILITY
by Peter Avitable
(formerly Financial Advocate and Senior Consultant to GMHC)

PLEASE NOTE: Disability benefits are available for all AIDS and ARC patients (not only patients with PCP or KS) who are disabled.

1. SSD--Social Security Disability

A. Eligibility is based on accrued work experience. For patients over 31 years old they must have completed 20 work quarters (a quarter is a 3 month period) in the last 15 years. The requirements are less for a patient under 31.

B. Eligibility for SSD is not means tested. Beyond the work history requirements, a patient can be eligible regardless of their assets. (There is no need to give up any assets.)

C. Payments usually start 5-6 months after documents are submitted (not retroactively).

D. Patients receiving SSD will be entitled to Medicare, but not for 24 months from the date of the first SSD check. THEREFORE, there is an extended period of over 2 years where a PWA [or PWArc] is not covered by Medicare. Please make certain your PWA [or PWArc] knows there is a law that states that when a person severs from a job for reasons of disability they are entitled to pick up the health insurance coverage they had at that job. They will have to pay their own premiums, but this will allow them to have health coverage until Medicare starts.

2. SSI--Supplemental Security Income

A. For patients not eligible for SSD.

B. The maximum liquid assets a person may have is $1,500.00 (above that, the only other assets that are acceptable are a $500 inactive burial account, ownership of a car, and ownership of a primary dwelling). If a patient has more than $1,500 in liquid assets, buying a car or co-op might be a possible solution to make them eligible for SSI. A PWA [or PWArc] must sign over any assets to family members or others. The assets of any join bank accounts will be considered one-half the PWA's [or PWArc's]. Live-in lovers should always be considered roommates for the sake of the PWA [or PWArc] receiving maximum SSI benefits.

C. Benefits are minimum $324 per month to a maximum of $385 per month.

D. Medicaid automatically comes with SSI.

E. SSI recipients are eligible and entitled to food stamps. These benefits run from $74 to $79 per month. The PWA [or PWArc] must apply separately for this benefit.

F. Presumptive Disability--Social Security acknowledges that PWAs and PWArcs are entitled to a protective filing date and presumptive disability period of 30 days in which Social Security Applications are processed. Patients will receive payments retroactive to the protective filing date.

3. Income Maintenance Welfare

Income Maintenance is public assistance welfare at the City level.

A. Benefits paid to PWAs from Income Maintenance (HRA-NYC) is considered a loan to the PWA [or PWArc] which must be returned once the PWA [or PWArc] starts to receive SSI benefits. The loan is returned through interagency exchange from the Federal to the City government level from the retroactive SSI payments 30 days duration from protective filing date.

B. Breakdown of Welfare budget:

Maximum benefits--not to exceed $375-$385 per month;

Rent allotment--$193-$225;

Cash for living--$54.50 twice monthly;

Heat allotment--$8; and

Food stamps--$74-79 per month.

4. New York State Disability

A. From private employers only.

B. Payments are $140 to $145 per week for 26 weeks.

C. This benefit is very important because these payments are coming during the time you are waiting for the SSD payments to start.

5. Unemployment

[PWAs and PWArcs should be encouraged] to go for it. It is another 26 weeks of a possible $173 per week.

6. Illegal Aliens

[It appears possible that according to a certain law] illegal aliens [have] rights to SSI, Welfare and Medicaid.

NO BENEFITS CAN BE HAD WITHOUT AT LEAST TWO (2) SUBSTANTIAL IDENTIFICATION DOCUMENTS SUCH AS ORIGINAL BIRTH CERTIFICATE, ARMY DISCHARGE, PASSPORT, DRIVERS LICENSE, ETC.


SUBWAYS, BUSES AND LIRR OFFER HALF-FARE TO PWAs
by David Summers

The NYC Transit Authority is offering reduced fares throughout the NYC system to Persons with AIDS at all times--24 hours a day, 7 days a week.

You must fill out the necessary form along with another form which your doctor must sign. Here's how it works:

On subways, show your card to the railroad clerk in the token booth and purchase a token at the regular price. (If you already have one, just show it to the clerk.) The clerk will issue you a return ticket. Deposit your token in the turnstile and enter the system.

To enter the system on your return trip, show your card and submit your return ticket to the clerk. The clerk will allow you to enter through a special fare turnstile or gate. You may use your return ticket up to two full days after it is issued. The ticket is valid at all stations, except the station where you received it.

On buses, show your card to the bus operator and deposit half-fare in exact change into the fare box. Passengers paying half-fare are entitled to the same transfer privileges as full-fare passengers.

Besides the form filled out by you and the one by your doctor, you'll need two passport-size photos. Donna Dash at GMHC is prepared to supply the forms and a volunteer to take your photos. Call her at (212) 807-7660 to make arrangements.

Or you can call the Transit Authority's Reduced Fare Program for the Handicapped at (212) 878-7469.


NYC COMMISSION COMBATS AIDS-RELATED DISCRIMINATION

AIDS-related discrimination is ILLEGAL! That's the message being disseminated by the AIDS Discrimination Unit at the New York City Commission on Human Rights. With a staff of six (including one attorney), the AIDS Unit has embarked upon a campaign to publicize the existence of the Unit and to safeguard the rights of PWAs, PWArcs and those perceived to have AIDS.

The New York City Human Rights Law prohibits discrimination against men, women and children who have AIDS, are thought to have it, or are perceived to be at risk of acquiring it, in the areas of employment, housing, or public accommodations (e.g., hospitals, ambulances, doctors' offices, bars, restaurants, stores, etc.). If you believe that you have been discriminated against because:

* You have AIDS

* You have ARC

* You tested HTLV-III positive

* You are a family member, co-worker, lover or friend of someone in the above three categories

* You are a member of a group considered to be at risk for AIDS

the Commission can help you. The Commission can accept complaints, investigate the allegations, mediate the dispute, and proceed to public hearing where appropriate. Under the Human Rights Law you may be entitled to reinstatement to a job, back pay, apartment rental, money damages or other forms of relief. Under the law, complaints must be filed within one year of the alleged discrimination.

By establishing a separate unit, the Commission hopes to avoid the frequent delays in processing complaints. Due to the skillful efforts of the AIDS Discrimination Unit staff, many complaints are resolved within 24-48 hours. Over the past couple of years, the AIDS unit has responded to over 170 incidents of discrimination and given many hundreds of callers advice regarding their rights and options. It is important that we get the word out about the AIDS unit and that we encourage and support each other in protecting our rights.

For further information or assistance, call the AIDS DISCRIMINATION UNIT of the NEW YORK CITY COMMISSION ON HUMAN RIGHTS at (212) 566-1826, 566-5506, 566-7638 or 566-5446.

-------------------------

Another Full Page Photo