When a web designer just doesn’t get it.
When we first started going to Dr. Tamarra Fedec of City Line Family Medicine, I was thrilled to find out that they had a new website and I could make appointments and request Rx refills through the site. That was even better than Kaiser, where I had to call (and if you’ve just hit on this site, read down for why I don’t like to call). Trouble is, a process that started on the web, didn’t stay on the web, or even in email. Here’s what happened one time early on.
The website asks that you pick three dates, and gives time ranges. Naturally, I expected an email confirmation that they got the request, and that so-and-so date and time was reserved for my appointment; or that none of those dates were available and to go back to the website. Instead, I got a phone call (which goes to my email as a message) saying that City Line Family Medicine wanted me to call the office. That’s all. Just call the office.
So, the next day I called through IP-Relay, and told the relay operator to get a person on the line. (If I don’t do that, the operator records the message, then types out the entire menu for me, and I have to pick from the menu. Because the call has timed out, the operator needs to make a second call. If that results in another menu system, then we have to go through the whole process again. I’ve been on phone calls where we’ve done this three or four times before getting where I need to go.) Once we got a person on the line, it was an answering service, not the actual office itself. After waiting for the operator to explain relay to whoever answered, I then typed out why I was calling, that I’d gotten a message to call back, and the service transferred me to the office. So far, so good.
When I got the office on the line, I waited again for the operator to explain the service, then I re-typed why I was calling, that I’d gotten a message to call back. But that person didn’t know anything about me, Betty, why I was calling, who called me, couldn’t find out while I was on the phone and told me they would call me back. So, that was at least 30 minutes of my time wasted for nothing. And of course, calling back results in me getting another incomplete message by email.
I asked them several times to leave a complete message, not just to “call back,” but I don’t remember that happening until recently. Maybe they are worried about privacy issues. But if that’s what is bothering them, they should TELL me that. If I know the problem, I can address their concerns. I can tell them that the email only goes to me, and no one else sees it. I can tell them that if someone else sees the email by mistake, that it doesn’t bother me. I can make choices. Without information, I’m left high and dry, wondering what is going on.
I’ve seen much better web designs where the the person I’m making an appointment with has their time blocked out– I know when they aren’t available and when they are. I pick a time, and I get an email in response confirming, or rejecting. It can be so easy. Maybe I shouldn’t blame the designer completely. After all, the office staff should have, at the least, told, me who called so I could tell them I wanted to talk with so-and-so. Best would be for the message to be complete– who called and why and what to do about it.
After this, I started faxing everything to the doctor. I sometimes got faxed back, and I still got calls. They became better about leaving messages why they called. But this summer, apparently the that IP-Relay service I was using changed the address they use to send messages. So all of the messages went to my spam folder, and I didn’t know for a couple of months. Another reason I prefer direct communication. Going through a service, no matter how great, just adds another layer of complexity and that can lead to errors.
Why I don’t like video relay all that much
The videophone is wonderful. Whether its iChat on the Macintosh, or a black box on top of the tv set, being able to sign back and forth over “the phone,” for lack of a better word, is a wonderful, easy way to converse. But I don’t use the video relay services (VRS) much. At least, not for business calls (which is what my call to the doctor’s office is).
The reason? My fingerspelling stinks, both getting and giving (receptive and expressive skills in the lingo). Not for lack of trying. There’s a level of micro-muscle control that I can’t get to. It affects my art work, too. Undo, snap to guide, layers, the ability to save as one file and go back to an earlier version and rework it– those are computer tools that are a boon to someone like me who can’t even cut a mat without going past the corner mark. I’m a much better artist now than I was in my pre-computer college days. Names, addresses, phone numbers are too hard for me to work with through video relay, especially when I’m feeling pressed for time.
In person, I can make myself understood faster and more easily. If I’m using an interpreter for a phone call I can talk so the ‘terp repeats it; or if it’s receptive, the ‘terp will write it out for me. But most of the time on the relay system, the interpreter can’t hear my voice, or write things for me. With a service using iChat, we can, and I’ll use that for non-stress phone calls. Or, if I’m on the videophone with a deaf friend, I tell them I’ll email them the information. But native signers, those with deaf parents or who went, at an early age, to schools that use sign language, generally don’t seem to have problems reading my fingerspelling. But that’s their visual skill, not my fingers, that get the credit.
But this is me, not all deaf people, most of whom love VRS. It’s faster, and it’s in their language, and they are in control. But give me email over the phone anytime. Not only do I trust my English skills (I’ve had jobs where I correct hearing people’s writing); I don’t have to waste time and money navigating the phone menu systems, being on hold, getting the wrong person and being transferred and saying (or typing if I use IP-Relay) my message all over again. The phone is such a time-waster. And in these times with other options, email, fax, instant message, texting– the doctors’ offices insistence on using the phone is incomprehensible to me.
This relay thing
This just happened this afternoon…I’m looking for a new doctor, the info online only gives voice numbers, so I call to ask for a fax number. Here is a cleaned up, partial transcript:
ME: …hi I’m just calling to ask for your fax nbr pls ga
RELAY: (side conversation: nobody likes relay calls huh) for our what…610.XXX.XXXX GA
ME: thank you, and I don’t like relay calls either, after all I have to type out my end so does the relay operator. I know it’s tedious but it is access ga
RELAY: (long pause) (silence) (silence)
ME: ok well have a good day thanks for your fax number ga or sk
RELAY: (CALLED PARTY HAS HUNG UP) (ANOTHER CALL Q GA)
ME: no thanks. Sorry I embarrased them but I’m glad you interpreted that it gives me an idea what to expect ga
RELAY: (its no problem, it wouldn’t be fair to you if I left out any information, im glad you made a point to her) …
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For those who don’t know what “relay” is, it’s a service that allows deaf and hearing people to have a telephone conversation. Most of the time it’s deaf calling hearing, but can be the other way too. So, if I want to call a doctor’s office, I call the relay service, and the operator there calls the hearing person at the doctor’s office. The relay operator and I are typing to each other over the computer’s Instant Message system (called IP-Relay, more about different relays later). The relay operator generally starts with an “intro” telling the hearing person that this is a deaf person on the line, then turns it over to me. A good operator will type everything they hear, including background noises, tone of voice and side conversations as shown above. After all, if I was hearing, I’d hear all of that for myself.
Is it tedious? Yes. Especially for the hearing person because typing is slower than talking and they have to wait through the time it takes for me and the operator to type with each other. But it is access!
Before relay I had to rely on hearing people to “help” me make phone calls. Most of the hearing people in my life haven’t signed, or signed well, so they couldn’t interpret a call. Sometimes their help wasn’t much help. Once, when I was applying to college many years ago, I had to call the office for some information, and my mother had to call for me. She took over the conversation, had a nice chat, and hung up. I had the answer to my first question, but I never had to chance to followup based on the answer. Boy, did we have a fight over that! I told her it was supposed to be MY converation, not hers!!!!
With relay operators, it’s never a problem. It is MY conversation. My access to the hearing world through the phone. However, it’s not “direct access” because I’m using a third-party, the relay operator, to make the phone call.
For me, direct access means email, fax, and instant messages. I’ve never been able to get businesses to use instant messages, though, unless they have a lot of deaf clients. I prefer direct access because adding a third party adds another layer, and can create errors. Other deaf people prefer relay to direct access because they don’t trust their written English and going through a hearing person can help.
This is a big subject, more later.
What I Want
I want a doctor who:
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Will provide interpreters when requested. (A federal law, but getting people to follow the law, or just knowing what to do isn’t easy.)
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Will communicate by email (whether the doctor themselves or any one in their office who needs to reach me, such as a scheduler).
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Will help me advocate with other doctors and not abandon me when I walk out the door. (If I run into trouble with a specialist that the doctor refers me to, then their office can call the specialist’s office and help.)
That’s the basic wish list. Interpreters are not always enough. In addition, I want:
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To not have to call and check, or remind staff every time that I need an interpreter. It should be on the computer (like it is with Kaiser).
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An easier way to make appointments, through the web, email, whatever, as long as I don’t need to call to make it or confirm it.
I’ll probably think of some other things, but this is the list today.
My quirks
I’m far from perfect. Being deaf is not the only factor informing my discontent with access to medical care in Philadelphia. I’m also a night owl, generally going to bed about four in the morning and getting up at noon. This gives me very little time to interface with the world, just a few hours in the afternoon, which is a prime time for me to work and earn a living, not deal with this stuff.
That’s one of the reasons I prefer email to communicate– it’s asynchronous. I can write an email to someone at 3 a.m., and know that the right person will read it when it is convenient for them, and vice versa. Trying to get the right person on the phone can be hell, as both hearing and deaf people know all too well.
Another factor has just been dealing with our move to Philly from DC. I think I’ve been depressed for the past 2-3 years and am coming out of it now. I haven’t made a lot of new friends or networked a lot for solutions to my doctor/interpreter dilemma. I’m an introvert to start with, add feeling overwhelmed and depressed and the result is no forward motion.
A third factor is my upbringing. I was raised, unintentionally, to be a nice, passive, hard of hearing girl– “I just hope Nancy grows up and finds a nice man to take care of her,” was something my mother told someone, unaware that I could lipread her saying it. Nice girls (especially those who grow up going to Catholic girls schools) don’t make waves and rock the boat. While I can advocate for myself and my friends, I hate to do it. It drains me.
Given all that, I feel that I’m smart and competent, and I really don’t think I’m asking too much.
What I’ve faced in Philly
In Philadelphia, no one knew what I was talking about when I tried to find a Kaiser-like organization here. As a clueless consumer, I don’t know why HMOs are called that– they are just insurance companies here. Every doctor has their own practice, or is in a small group and they accept insurance from Keystone 65 (the HMO we picked for Betty), and a host of other insurance companies. There’s no network, there’s no centralization, there’s no shared records or scheduling through a computer intranet. Everything is distributed all over the city.
And each insurance company has different rules about where to send people for tests, so the doctor has to look it up before telling us where to go. We live in the Northwest, in Germantown, and we’ve gone to Center City and out to the burbs for tests and hospitals, and what have you.
Also, there are no “urgent care” centers, at least not with Keystone 65. When I’ve called the advice nurse a couple of times, I’ve been told to go to the emergency room at the hospital. I don’t want to go to the ER– it seems to be an unnecessary expense when Betty has a sore toe that won’t get better. It’s not like she’s having a heart attack or was in a car accident and is bleeding all over the place, which is what I think an ER is for. (Her sore toe was eventually diagnosed as Gout, but that could have been determined in an urgent care center much more cheaply.)
And every time we are referred to new doctors/specialists I have to go through the rigamorole all over again: call through relay; get hung up on because they think it’s a crank call or someone is trying to sell something; call back again without the “relay intro msg” and explain that I’m deaf and using a relay service, that I want an appointment and will need an interpreter; get the response “oh, we don’t provide interpreters, but you’re welcome to bring someone who can help you out;” tell them, “yes, you do provide interpreters because it’s a Federal law called ADA, the Americans with Disabilities Act, and I can give you info on where to get the interpreter;” make the appointment; show up but no interpreters. That’s just one scenario of several, in another one I just get ignored. Betty’s primary doctor isn’t any help. The attitude of those in the office is that once we leave their office, they aren’t responsible and can’t intervene in the activity of another doctor’s practice. Sounds professional, reasonable. But it means I’m basically abandonded to tough it out for myself.
I’m tired of this.
What I’m used to– Kaiser Permanente
In DC, I joined Kaiser Permanente which I knew to be an HMO, and Wikipedia just told me that it’s an “integrated managed care” system. What it means to me as a consumer is that Kaiser is both the insurer, and the health care provider. They have medical centers throughout the DC area. And the doctors are good. Betty’s cardiolgist, Dr. Huang, had degrees from both Harvard and Yale on the wall of his tiny office.
As a deaf consumer, I called Kaiser to make an appointment (this was during the TTY era), and the first thing they would ask is, “Do you need an interpreter for this appointment?” What a blessing! I didn’t have to ask, didn’t have to explain, didn’t have to tell them it’s a federal law for them to provide interpreters, didn’t have to tell them where to get interpreters. Because the doctors are salaried, and part of the medical center, they don’t need to worry about the cost of providing interpreters, that’s taken care of by the medical center/insurance company.
I went to the North Capitol center, which is near my old home as well as Gallaudet University. In addition to the primary care doctors and some specialists, the pharmacy was there. The lab I went to for blood work, and the radiologist for mammograms was there. The podiatrist was there. The eye doctor was there, as well as the opticians and they sold eye glasses and contact lenses there. And they were all employees of the same company. They all followed the same procedures and policies, and shared the medical records.
Sometimes we would have to go to a different center, depending on specialized skills or equipment. For example, Betty had to see a neurologist when she started having trouble with her memory, and that specialist was at a different center. Kaiser even approved out-of-plan doctors because the neurolgist decided that having an interpreter was a hinderance to neurological tests and found a neurologist, a coda (child of deaf adults), who signed well and hired assistants who signed as well.
The point here, is that it was always easy to get service, get interpreters, our needs were accepted and dealt with.
Kaiser also had “Urgent Care” centers, medical clinics that were open about 18 hours a day where a patient could go to get care right away– without the stress or expense of going to a hospital emergency room. It is a middle ground between the ER and the doctor’s office. And, because they are part of Kaiser, they share the records. If it’s needed to go to the ER, or be admitted to the hospital (not a part of Kaiser, but paid for by the insurance) then the Urgent Care center would facilitate the transfer.
While Kaiser isn’t perfect– nothing ever is– being deaf didn’t add a thick layer of trouble, confusion, stress the way it does in Philadelphia. Being deaf was just like being Chinese– a different culture, a different language and it was taken in stride.
Of course I looked for something similar in Philly, and nobody here– not deaf people, not interpreters, and not doctors– seemed to know what I was talking about. More about Philadelphia with a later post.
I’ve been frustrated (intro, the first post)
Generally, I’m an optimistic, glass-half-full kind of person. So, I hate to start something with a negative slant. But I can’t help it. I’m frustrated. I’ve been suffering in silence for the past couple of years, maybe venting to friends every so often. And I know I’m not alone in struggling with the medical world– Michael Moore has created an entire movie about a small segment of a larger problem (I haven’t seen it yet, though.)
So, I’ve been stewing recently, and vented some in an email to a friend last night. Then it hit me. I am, among other things, a writer. Hence, this blog.
Specifically, since moving to Philadelphia in December 2004, I’ve faced one problem after another dealing with doctors offices here; all centered on interpreters and communication. I’m not a saint, I’ve got my quirks and flaws. And I’m a strong proponent of the “not everything bad that happens to you happens because you are deaf!” idea. But ignore me one too many times, and I can’t avold it– I’m suffering from the oppression of deaf people by the hearing.
