Subscribe to this blog's feedI went to renew my eligibility for Ryan White services yesterday. It's an annual pilgrimage for Florida residents and always serves to illustrate some new way to debase a human being. The rules and regulations change, sometimes monthly, yet are rarely publicized, so you are never sure of which hoops you will be jumping through to obtain your services. Unlike most other states, which use retail services to provide benefits, Florida had decided to form their own entity to provide entitlement services. Suffice it to say, that I have never experienced a more inhospitable environment, than HIV service administration in the state of Florida.
The only thing that makes this process tolerable are the people who administer the program. They might not be perfect, but they try to soften the indifference of the system and the impact of the interview process. They attempt to bring humanity to a very inhumane system. While they may boast a tough veneer, most are very caring and I suspect the abrasiveness is more of a defense mechanism, to fend off the pain that they must witness almost daily. Many times they are experiencing the new rules with you, so you feel that at least you have a comrade as you negotiate this maze of paperwork. But still you cannot help but wonder: "does this system really need to be this dehumanizing?"
I always prepare myself, many times to the point of absurdity, for my inquisition. I have my photo identification, Social Security and Medicare card, proof of residency, proof of being positive (yes, really) and my latest lab results that include my CD4s and Viral Load. I also have a 6-month snapshot of my financial status, including bank statements, award letters and my 2003 tax return. So I pack up my ammunition and proceed to the Broward County Health Department. I am about to embark into the surreal world of entitlement services.
As I enter the Health Department, I feel like Yossarian, from Catch-22, entering the "Department of Redundancy Department". I remembered my visit from last year and redundancy was an understatement. I had been told that the requirements had been streamlined, but I remained skeptical because the rules of this game are always in flux. I proceed to sign in, and I am relegated to the chairs located in the hall of doom, to await my interview. I know to bring a book and so the next hour and one half passes fairly easily. I glance up occasionally to see my fellow clients. They represent every facet of living with HIV with the thread of commonality being that we each need these services to survive.
Finally, my name is called and I gather my ammo and enter the belly of the beast: the Eligibility Department. A caseworker leads me into the office, but there is no formal introduction between us, nothing to acknowledge that two human beings are actually going to interact. Civility appears to be an option here, as there is not any law that says civil servants have to be civil. The two women, who share this office, just seem numb and indifferent. Worse yet, is that here in the Eligibility Department, it seems that they are actually being penalized for occupying space. The Health Department has outgrown its old home, but these temporary quarters were offensive, even by governmental standards. I no longer wonder why they lack any expression, as two of them have been stuffed into and share a 10' x 5' room. I swear I have seen larger closets.
So amongst this splendor, the interview begins. I am asked for my documents and supporting information, which are quickly reviewed, and it is decided that I will remain in the Ryan White program, for prescription HIV drugs, for another year. But there seems to be a problem with my income and I might not qualify because it is too high. When they look at my private disability statement, they only consider the gross amount shown, which still includes the amount from my Social Security (SS) income that I receive. They use this gross amount, rather than the net amount, which deducts my SS income and reflects the real income from my private disability policy. Instead they take the gross amount and add my SS income, thereby double counting my SS income. I ask why they are incorrectly adding up my income, only to be told that they always go on the gross amount. "But the gross amount, when added to my SS income is double counting", I protest. I receive a look that tells me that I am barking at the moon and I cease any further inquiry. Their look tells me that they know the system is broken, but they know how to work it so your services continue. It appears that accuracy is not as important as seeming to be in control of the process.
The caseworker completes my paperwork and proceeds to scan in each document that I provided, so they are part of my permanent record. She thanks me for my patience and hands me all my documents and instructs me to take them, next door, to room number 10. I do as I am instructed and in room 10, I find a pleasant and efficient clerk, who reviews all my documents and the application and then proceeds to copy every document that the previous caseworker had just scanned. She then takes all these copies, staples them together and tosses my packet onto one of the 5 piles on the floor. She returns my originals to me and as I exit the office, I swear I can hear the Twilight Zone theme music playing...
So from beginning to end, this whole ordeal takes 3.0 hours. Not too bad on the awful scale and I don't have to return, as many clients do. I know the rules and I come armed to the teeth with data. But what about the others who come to apply? Many seem to face incredible challenges, yet who champions their cause? So many just seem to get chewed up and spit out, by an indifferent system, only to return another day to begin the process anew.
I'm all set for another year and I am grateful because the medications that this program provides me, keep me alive. I am very grateful, each month when I pick up my bag of drugs, because without Ryan White services, I would have no prescription drug coverage at all. I also greatly appreciate all the work done by the Health Department employees, even if their methods sometimes defy logic. I never forget that they don't make the rules, but they get stuck enforcing them.
Unfortunately this story does not end here.
That's because, during my interview, I got to see the human side of my caseworker and I was very depressed by what I witnessed. Initially I saw a woman who appeared to be dejected and seemingly uncaring, but as a result of inadequate funding and policy issues, was now a woman who's spirit had been broken and who had been demoralized. She told me that she used to work as an HIV caseworker in another state but had finally been forced to abandon her caseload there, all because of administrative policies. She had become a caseworker by choice and the fact that she was also HIV positive, made her work with Ryan White services seem a natural fit. She enjoyed her work and felt that she was making a difference. She was living with HIV and earning a living by helping others on her same journey.
But then something changed. It became less important which services or how they were administered and rather, the cost of those services were given paramount concern. Ways were developed to disenfranchise applicants and a system that was initially designed to deliver services, became a barrier to limit access to those very services. Where she once spent her days tailoring the Ryan White services to her clients, she was now obliged to find ways to limit their access to those services. Her profession had been bastardized, in the worst possible way, all in the pursuit to save a few dollars.
Having become totally disillusioned, she moved to Florida with the hopes of regaining her spirit and her purpose. She again became a Ryan White caseworker and said it was good during the first few years, but then the ominous signs returned. The accountants had again retaken the castle and the rules of the game returned to limiting services. Funding was tight. All of those requirements that I mentioned earlier were morphing into a barrier to deny services and by default, had again become her mission and her job.
I initially thought that she was a woman who was dejected and uncaring, but what I left in that room was something beyond description, yet still inspiring. Not only had they demoralized her, but they had dehumanized her by their rules and the environment in which they forced her to work. Yet, in spite of all that had been done to her, she maintained her humanity and compassion. Many times during our interview, we were interrupted and she would listen patiently, while some client was complaining excessively about how awful his day had been. When I joked that sometimes her job required great patience, she replied: "For some of these souls, we are the only ones that they have to talk to and I guess today is my day to listen." Even while she labored under intolerable conditions, she still had compassion for her clients. She understood that many times it is the small things that matter, and in life, we each have our own role to play.
But as I was leaving the building, I saw her one last time and as I looked in her eyes, I saw that light of compassion falter, that flicker of caring fading and realized that the system had again, begun to extinguish her inner being. She was slowly being changed, her spirit continually eroded, and again she was required, for her own preservation, to erect barriers to the very clients that she served. Where she once had a career that nourished her, she again had a job that merely sustained her. Her profession was being usurped, again, all in an attempt to save money by limiting services. Once again her compassionate lifeblood was being drained away.
The indifference of politics and inhumane administration of entitlement services is claiming yet another soul... one soul too many.