That's right - my partner of 14 years. He died of liver cancer with complications from HIV and other cancers. It was a rather long process: about two years.
It sounds awful. Were you able to spend a lot of time with him towards the end?
Yes. You see, I was his caregiver, or as the housing department puts it: "live-in aide." It was difficult, but necessary: during the last months, for example, we had aid from a local hospice that took care of things like reiki treatments, medications, the wheelchair, etc. But I still had to coordinate things with them. In the last weeks, I was filling out my time sheet to IHSS (In Home Support Services run by the State of California) with 14 hours a day.
His name was Michael. Also, a description is in order, if you like: he was only 48 years old, 6'5" - a former champion runner and very robust person. It was difficult for him to realize, day-by-day, the things he couldn't do.
Dan (on left) with Michael at the gardens of Filoli (Woodside, CA - 2009) One of the biggest frustrations he had with his illness is that he rarely looked sick. In fact, on three occasions, emergency rooms sent him home because he "looked too healthy."
A lot on my plate doesn't describe it: it's more like some tornado dumped everything in front of me and left! You see, Joan, although we were registered domestic partners, some rights did not pass on to me: namely, his Section 8 voucher for subsidized housing. So when Michael died, my income and housing became, well, ZERO! A triple whammy, if you will. All in one fell swoop, just like that!
Now I'm faced with selling EVERYTHING I and Michael owned within the next three weeks and I'm applying for subsidized housing, which, as you may know, means no housing for a while. Because "live-in aides are not considered family. That's the way it works."
Triple whammy, indeed. What can you do about this? Can you fight it? And what do you do while you're fighting it?
We also had a hard time preparing for his death: we were in and out of emergency rooms way too often: about 12 times in the last 18 months, I think. When you're dealing with hospitals, medications, hospice, friends who want to help, doling out morphine, cooking and cleaning, things like housing technicalities go to the wayside.
So now, I'm dealing with the technicalities - that have turned into major life-altering situations.
I could see why you might have had other things on your mind. Has anyone in the area taken up your cause yet? Aren't you in San Francisco? You'd think that people there would be up in arms if this were brought to their attention.
They are. The support I have so far: AIDS Housing Alliance, Supervisor Sean Elsbrend, AIDS Legal Referral Panel.Catholic Charities, Housing Rights Committee. And Park Merced where I live.
The San Francisco Housing Authority is not true to SF. Neither is HUD. To me, in fact, it's "hard-hearted HUD." The extent to which the Housing Authority recognizes domestic partnerships is actually against HUD policy since DOMA [Defense of Marriage Act] is still on the books. And this is the way it works: if you are caregiving for a loved one, whether you are a sibling, son or daughter or even spouse, if you sign on as a caregiver, your employer (the person for whom you are caregiving) signs a waiver to YOUR rights. There has been a documented case where a father and son were involved: since the son signed on as a "live-in aide," his father - as head of household - signed away his son's right of being transferred the voucher, even upon the father's death. The son did NOT become "head of household" He was, in effect, an employee and as such had no rights at all.
The problem with the HUD rule is that it could easily have been written so that the survivor reverts to his previous status upon the death of the loved one. It all boils down to money: even though HUD is rightfully afraid of abuse of the system, the person who is the caregiver winds up the loser. And in the case where domestic partnerships are not recognized, the domestic partner loses.
This is the ocean view from the Park Merced window - it was incredibly comforting to Michael in the last six months.
How are you doing, Dan?
I'm hanging in there - by a mere thread, but hanging in there all the same. Every day brings a nuance (good or bad) to the situation: discovery of more things to sell that were in storage, vague emails of support from the supervisor or Park Merced, new avenues of legal advice. Thursday, I see my doctor who will hit the ceiling when I tell her that I still don't have a case manager and will reiterate: "SRO[single room occupancy]s are not an option." If I'm lucky, tomorrow I will learn what Park Merced has told AIDS Housing Alliance which has offered to subsidize a (small) portion of my rent. I have to make calls to the Mayor's office, the supervisor, and find out what the status is of several editorial letters to gay newspapers. And I'm applying to the AIDS Emergency Fund for assistance.
An update - I called my San Francisco District Supervisor Sean Elsbrend to find out what was happening on his end. He has been very good for my situation so far.
But Section 8 is now saying: "Since you weren't listed as a domestic partner, if we switch your status back, you may owe us money since you technically were not paying rent." The amount? By my quick (but probably erroneous) calculation: $20,000. An amount I can in no way afford. Elsbrend did indicate that Section 8 was considering a transfer (by re-listing me as a domestic partner). He said both he and SFHA were working on trying to figure out how to make the transfer without me being out of pocket.
I don't know whether or not the situation is better - or worse.
Yikes! From the frying pan into the fire.
It shows that: Section 8 is rather dastardly in even thinking about it (this is the first I've heard of it). Any form of transfer penalizes the caregiver. They're saying that I broke the law in having myself listed as a caregiver instead of a domestic partner.
Is this an unusual situation that you find yourself in, Dan?
If it is, it's not going to be. Up to 50% of gays and lesbians over the age of 50 are caregivers. And while many of them are taking care of their parents, numbers of domestic partners as caregivers are rising.
It all boils down to this: the caregiver is screwed.
So, this is problematic on a number of levels. How can we help, Dan? What can we do?
That's actually a tough question, Joan, because it involves so many things as so many levels.
As for myself, I'm getting some support, but, as always, this kind of situation will need all the support it can get. I have the support of the district supervisor, my landlord, AIDS Housing Alliance, AIDS Legal Referral Panel and Catholic Charities. The Housing Authority, however, answers to a higher power - HUD. Any person/organization who could lend further support would be appreciated. Talking points: gay man with disabling HIV - community volunteer - registered domestic partner - listed as caregiver to partner - San Francisco Housing Authority will not transfer voucher.
The other question to be begged: how can we prevent this kind of situation from happening again? The simplest way, for me, would be to change HUD regulations to read that anyone listed as a caregiver while their charge is alive automatically converts to former status upon the death of the charge. Being a caregiver should not penalize you in any way.
So many couples, (straight couples as well) are affected by the rule that "caregivers are not considered family." People should campaign to have the HUD rule revised.
People who are in a caregiver situation will have to make provisions to protect themselves: they have to talk to the local housing authority or Section 8 people how to make the transfer after their loved one has passed away. If Section 8 says "no way," then you have to see if a transfer would be setting a precedent. Then, get prepared for a battle with the housing authority and HUD. And if your loved one dies prematurely before any revision of your relationship to the patient, you're SOL.
You paint a pretty grim picture, Dan. Anything else you'd like to add before we wrap this up?
Another update: The two battle fronts are stalling:
1. AIDS Housing Alliance has called Park Merced to figure out if any sort of deal could be worked out - hopefully one where I could stay here until things got better.
2. Supervisor Sean Elsbrend is talking to the Section 8 people and trying to convince them to transfer the voucher without penalizing me $$$$$. I've been advised to wait until Elsbrend calls me back - could be up to a week of putting me in limbo and my nerves are wracked.
As I've said before, I reaally want to continue to live here at Park Merced, so I'm not fighting them. They've been good about the whole deal so far. But Section 8 is another matter: I think some pressure has caused cracks, but I will still need as much support as possible. I haven't got the energy for a letter-writing campaign. Media, politicians and organizations are my best bet. If you have any ideas, let me know. Anything helps.
What exactly should they do, Dan? Spell it out, please.
If people want to make a stink about it, I think they should take it directly to the San Francisco Housing Authority. They should make three points:
1. I currently have disabling HIV, am 64 years-old
2. Michael and I were registered domestic partners, and although I was listed as a "live-in aide," there should be some precedence given to the domestic partnership.
3. Caregivers of any sort should not be left out in the cold once their ward/patient/loved one dies.
A dignified but strong letter can be mailed to: Henry Alvarez, Executive Director, San Francisco Housing Authority, Section 8, 1815 Egbert Ave., San Francisco, CA 94124
or email at: alvarezh(at)sfha(dot)org.
It would be great to contact me at danvojir(at)gmail(dot)com. Any little bits helps. Please notify me if you are writing to the SFHA - that way I can keep track of things. My thanks to everyone who is supporting me in this fight.
Good luck to you, Dan. I hope you win this one. Let us know how things go for you.
photo credits: Dan Vojir