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HEALTH CARE ACCESS Workshop:
(CART Transcripts)Sunday Morning: 10:45am-noon:
We have a great panel here today, I think. I will briefly introduce them so we can get into the substance I am a deputy chief of the disability rights section, which is in the civil rights division of the department of justice here in Washington
Our section enforces the Americans with Disabilities. We also provide technical assistance and have other functions. I'm in the enforcement part of the office And with me today are two colleagues, Amanda Maisels at the end and an Ann Marie Pecht next to me
I have been in the division since it became a Division 1 2K years ago after the passage of Americans with Disabilities Act in 1990. I have been involved in the original drafting of the guidelines that let led to the storchs successful design and a number of enforcement effort. Ann Marie has also been involved since the beginning with disability issues and with the ADA. She was also in the section before it was a section.
And she -- I'm not going to go into all the degrees and everything because I think what is more important is what people have to say.
But I will say that Ann Marie has her JD degree, her law degree as well as a masters degree in public policy analysis. So her background comes together very nicely here, both at the policy analysis and the law degree.
And she does same kind of things that I do, investigate complaints with respect to ADA. We bring enforcement action,litigation, et cetera One of her focuses has been access to health care since she has been at the Justice Department.
And Amanda, at the end, is a trial attorney in our SECTION she and Ann Marie has been initiated health care in our section. She has been handling a wide variety of cases since she has been with us. She is currently litigating a case with respect to a state trooper in the state of Mississippi who was basically fired from the academy since he had been accepted to the training academy because of diabetes. And that, we hope, is going to set precedent in many areas once we are successful with our litigation.
She has also been a staff attorney at Whittman Walker clinic where she represented HIV positive clients And she has her law degree from Harvard and has been a clerk to a judge -- to judge Kennedy in the District.
And then not from the so legal side, we have some balance, fort shoe Nately
Next to sme Meg -- right?
>>>: Meg.
MS. BOWEN: Meg Mcdoar month period of time period of time of the disability network. She is also a student. She already has one degree but going for another, am I right.
MS. McDERMOTT: Yes, that's correct.
MS. BOWEN: Then we have Cristine Fortunato. Has a masters degree and is is a community advocacy specialist also with the Connecticut women and disability network, CWDN, I got that right.
MS. FORTUNATO: I'm with the state office for persons with disabilities and serve saz an advisor of the network to the pleasure of the agency.
MS. BOWEN: What is PDA,.
MS. McDERMOTT: Connecticut is a state agency and other -- nonprofit.
MS. BOWEN: And we have Pamela dodge who has her RN and MS degrees and director for the center of women with physical disabilities in Pittsburgh at the ma gee women's hospital. And the three of them will talk about their own experience and advocacy and advocating for more adequate health care for women with disabilities. So we are going to get started with Ann Marie, who is going to give us an overview of what our office does and what the legal foundation is for access to health care and then Amanda is going to talk more specifically about initiatives.
MS. PECHT: I think I will leave it to Amanda to talk about what we are doing in the office on this issue. I just want to do a very brief overview of Title III of the ADA, which is the -- which is what covers what we are doing at the Department of Justice with respect to doctor's offices and hospitals et cetera. And just to keep it very brief, if you have other questions -- questions about other parts of the act or things that don't. late to impairment we are always able to help out
Okay. Title III of the ADA prohibits disability based discrimination by private entities that operate businesses and other facilities and that serve the public. That is not the legal language, but that is the gist of it.
That, as I said, would include doctors offices, hospitals, radiologist facilities and in general any type of privately owned health care facility that the public can enter. So that, I guess what would not be included who be laboratories you just send specimens to. Any type of privately operated medical facility is going to be covered.
And the act protects individuals with disabilities, all types of disabilities, including visual, individuals who are signed blind or visually impaired, deaf, hearing impairments, diabetic, HIV positive, anything that fits is a broad definition of disability.
Again we are going to focus on mobility impairments today. But we brought very good technical assistance materials that relate to the ADA in general, with respect to medical offices. This is access equals opportunity. We have these pamphlets in the back.
And this brochure is a very good, again, overview, but it specifically talks about issues of importance to the deaf and hearing impaired community.
And then we have another booklet, checklist, this is for individuals who are blind, deaf, blind and visually impaired.
So even though we are not going to talk about those issues we care about them about and we have had settlement agreements that relate to those types of disabilities so to start out Title III broadly prohibits disability braced discrimination It begins with a general provision, which I will read to you. I normally don't want to because as we go through this it will become clear why it is one of the most important provisions with respect to what we're talking about.
Section 3 6201 of the ADA says that no individual shall be discriminated against on the basis of disability. And this is the important language, in the full and equal enjoyment of the good, services facilities, privileges, et cetera, of anyplace of public accommodation by aprivate entity that own, leases or operates a place of a public accommodation.
So we talked about what that means in terms of who is covered. But the language that I'm quoting here that is most significant is you can't be discriminateed in the full and equal enjoyment of goods and services, et cetera. And that would mean with respect to medical care providers, that you cannot be discriminated against in full ability to enjoy the services that a physician office would provide, mammography clinic would provide, that the hospital provides.
The next general section of the ADA that is particularly important to us is -- says that a public accommodation may not deny services on the basis of disability or afford unequal services, that is provide persons with disabilities that are not equivalent to the services that individual without disabilities get.
Then the regulation goes on to discuss in detail exactly what constitutes discrimination with respect to, as we talked about individuals who are blind or visually impaired may need auxillary needs and services, individuals who are deaf entitled to effective communications in some circumstance is interpret terse or this service -- is it real time captioning this would be called?
But even though there are specific provisions in the ADA that deal with certain types of disabilities or list prohibited acts or things that you have to do, there is nothing in the ADA that specifically relates to medical equipment, which is what we are talking about here.
Originally the Title III regulation had a paragraph that talked about requirement for accessible furniture and equipment And that was in the proposed regulation During the comment period that takes place on a proposed regulation -- I guess some comments are made about that particular section and the department when it issued the revised section -- revised regulation took out the paragraph on furniture and equipment and said we are -- we don't need this provision. First of all, we don't have specific standards so we don't have anything to point to in the way that we would before, reconstruction or alterations. Besides that we believe it is already covered in the general prohibitions that I read to you So that is why those sections are so important.
Specifically the department, this language is permanent. "the department has determined that its requirement are more properly address by other sections. And purchase or modification of equipment is required in certain instances by the provisions of 36201 and 202."
The example they gave was an archaic -- an entertainment ar cade to provide video machines to ensure full enjoyment of the facilities and to provide an opportunity to participate in the services and facilities it provides.
So now we are back to that general language. And -- if you want to take out -- make an example that is more pertinent to what we are talking about, the example that they could have just as easily have given is a doctor's office must provide accessible examination tables in order to enjoy the full and equal enjoyment of the services that the physician's office provides.
There are other sections of the ADA that specifically talk about denial of participation and that section can be applyed in the circumstances by saying failure to provide accessible equipment like mammography equipment denies persons with disability the ability to participate in the service provided by Title III.
And it is also discrimination to require individuals to participate in an unequal benefit, which would mean if everyone else in a physician's office goes in and it is not able to get a complete physical, you know, an abdominal examination, whatever, and because of a lack of accessible equipment, you are not able to obtain that same kind of complete examination, then arguably you are not -- \are you\you are being discriminated against because are not being provided with any equal treatment.
Two minutes? We're almost there All right. Preamicable language also talks about barrier removal, the section of the ADA that requires anyone, covered entities to remove barriers when they are readily achievable to do so. The department thought that language is applicable. So physicians office, if you consider a lack of exam table as a barrier to services would require them to engage in barrier removal, perhaps by purchasing an examination table.
Or if that is not achievable they can purchase a lower table and pad it, depending on what their resources allowed And if that is not readily achievable, if it is not readily achievable to do that, they can train their staff, at a minimum train their staff in the procedures for a safe transfer. So --
>>>: That is a joke, huh. Is this complaint -- this is complaint material, correct?
MS. PECHT: I'm just trying to gave broad overview. Amanda is going to actually actually apply it.
MS. MAISELS: As Irene said, Department of Justice handles complaints from, you know, individuals who file complaints with us. Why I don't just take questions after the -- afterwards.
MS. BOWEN: How about if we have some questions after the two of you speak and then we will have others after the next presentter. And at the end if there are others. Thanks.
MS. MAISELS: So we have been working on access to medical offices and other public accommodations for a long time. We realize most of our work with regard to medical offices is really more about getting in the door. Most of the complaints that we received were about that kind of basic accessibility.
Can I use the microphone, my voice is a little -- sorry I think it will be easier for me to speak with this.
But we realize that we had not received many complaints about medical equipment but we knew it was a very important issue. So within the past year or so we started an initiative to try to develop more work in that arena and that involved, you know, us becoming better educated about what was available in terms of medical equipment, what the problems were and we talked to different advocates along the way.
One person we spoke to actually posted an e-mail on a list serve that we were interested in hearing from people that basically had bad experiences in doctor's offices, specifically with medical equipment.
So we heard from a lot of folks that way.
Unfortunately there was a little bit of a misunderstanding when that e-mail was posted. It said we were working on regulations on this issue, which is not true. But we are working on more enforcement efforts. And we see this as an important step to get a very good understanding of really what is happening out there before we were to take any further policy measures, if we were to do that.
So, you know, in the course of our research, I did come across -- there is actually, first of all, scientific literature reviewing the kinds of medical access that particularly women with physical disabilities have had and at least to different studies I found showed that women with mobility disabilities were less likely than women without disabilities to both receive pel Vic exams, get PAP tests and get mammography.
Those are the areas we have been looking at. Other speakers today will be focusing on breast health mammography, pelvic exams and those kind of specific issues.
We are working on a number of investigations dealing with medical equipment. And none of them is, you know, turning into litigation right now. But if that were to happen that would give us another opportunity.
The only litigation I am familiar with is the lawsuit brought against the Kaiser health care in California, and the plaintiff in that is from the disabilities rights advocates. Carolyn Jacobs here today, one of the attorneys in that. I will let her answer any questions you may have about that. I wanted to give a brief description that that lawsuit resulted in a settlement agreement that is very comprehensive.
And essentially Kaiser agreed to have all of their facilities monitored and to ensure ultimately that appropriate ACCESS says ability medical equipment would be installed. When I spoke with DRA recently they told me that Kaiser had surveyed all the facilities and they are looking at wheelchair scale, lifts and accessible exam tables. And DRA will monitor that survey and come to a
conclusion --
>>>: I think we all ought to applaud effort that will save so Mr. Whims lives and act as a role model.
MS. MAISELS: Exactly, exactly. So that is a very important role that litigation can play.
I just wanted to mention a few other resources that we learned about in the course of our project in this.
We did -- we came across actually some very extremely well done videos that are put out by the University of Alabama at Birmingham as a spinal cord injury center. There is a Dr. Amy Jackson, who created two different videos. One is on the gien logical examination with women with spinal cord injuries and the send one is on pregnancy on delivery. Especially the one on gien co-logical examination is a good examination on how to do the exam, and it can be done and proper ways to transfer all sorts of things.
And actually in addition to the three pamphlets that Ann Marie pointed to, I just pointed out from the web page information about those videos and then some information about two different accessible exam tables that we had come across in our research. So it is just hand out in the back if you are interested so you can find those websites on your own.
And then I just wanted to mention two different -- you know, we looked at a lot of information from manufacturers about accessible examination tables. And what does that mean exactly that is accessible. Well, there are a lot of different models of exam tables that raise and lower mechanically, with power.
The first one that seemed to be really embraced by the disability community was a table designed by Dr. Sandy well wellNER, who had a disability and unfortunately passed away. She designed a table that had especially designed boot stirrups to hold legs for a woman who did not have the control or who had SPACITY to have a GYNECOLOGICAL exam. That is out there and has been a very, very important development.
I also found there is another table manufactured by custody mid Mart just came out last October that has been endorsed by the accessible manager at Kaiser and I understand that is a table used in their facilities.
And this table lowers to 18 inch, which is the lowest I have soon in accessible tables. So those are just some resources to know about.
I know Pam is going to show us some pictures of accessible equipment so we get a better sense of that.
MS. BOWEN: I would just like to add, there was recently -- Amanda knows more about this than I do. But the lawyers committee in D.C. has recently filed a complaint that has happen, right?
MS. MAISELS: They are not filing a lawsuit. Just a complaint with us.
MS. BOWEN: We have a complaint about a local hospital with respect to access to medical equipment.
>>>: Isn't it disability rights in D.C?
MS. BOWEN: That's right.
MS. MAISELS: Right, the lawyers committee.
MS. BOWEN: And I wanted to mention this is an initiative that the lawyers committee and disability rights advocates -- is that the correct name?
>>>: Yes.
MS. BOWEN: Have undertaken. And they are looking at several hospitals and health care providers around the area. So we are hoping that some more legal action comes as a result of that. And as a result of us investigating some of the complaints.
We are also investigating a couple of complaints in different areas around the country using the provisions that Ann Marie mentioned in our regulations.
As she said, there is nothing that says an exam table has to be this height, has to have this function, there is nothing that says that win have a right to have a exam or et cetera, but using the barrier provisions and the equal opportunity provisions we think we can make headway even before standards exist.
The fact that there are none now, doesn't mean there won't be any in the future. In the future as we have more rule making and the climate becomes more welcoming to rule making werks hope to establish standards.
Currently we are not doing that.
>>>: I'm concerned when you said there is no standards about a woman's right to a
GINECOLOGICAL exam.
MS. BOWEN: There is no particular provisions in the regulation. The regulation tries to address a number of types of services that people have an equal right to. It is not one given as an exam.
>>>: If the American College of ªobstetrics and gynecology has an accepted guideline that women at this age should have a first exam and PAP exams and this is approved by the gynecologists and send by the insurance companies and Medicare, doesn't that supersede a regulation that says they -- women with disabilities have a right.
MS. MAISELS: It is more about the ADA requires equal access, so yeah, if all women are supposed to get this certainly women with disabilities are entitled to likewise. The point we were saying we don't have a specific standard that addresses the heights of examination tables. But nonetheless any provider must make sure they are not denying equal treatment to anyone with a disability. That is the general nondiscrimination provision that does cover all this.
MS. BOWEN: If we were undertaking some litigation we may use the kind of things you just presented as examples of "here is what everyone is entitledled to. This is the standard of medical care." we might have expert testimony about when it is necessary to have certain types of examination, what the general guidelines are in the context of, okay, that is the basis and the standard and everyone is entitled to this.
We're just saying there is nothing specific that says in the regulation "here exactly is what we can enforce."
So we have to be a bit creatively, perfectly willing to do that. That is what litigation is generally about. There was a question earlier that we should get to.
>>>: Yeah, about the ADA. You talked about Title III but if a doctor takes Medicaid, title 19, Medicare, wouldn't they also fall under Title 2 as well as 504? MS. BOWEN: They fall under 504 as a recipient of federal assistance. Only under Title 2 if it is a state and local government entity. So if it is a public hospital they would
fall under Title 2 as opposed to Title III. Same provisions would apply. The regulations are written differently but the same provisions apply, equal opportunity.
>>>: So many of the title 19 -- I mean, what I hear from my consumers is some title 19 providers you can't even get in the door --
>>>: Like Planned Parenthood?
>>>: Just doctors who have steps without elevators.
MS. PECHT: Title 19 providers are?
MS. BOWEN: They are recipients of federal funds so they will be subject to Section 5 04.
>>>: I am not sure why they remain title 19 providers if they are not able to serve the people.
MS. BOWEN: Technically they are not supposed to be. I don't want to get into much detail on this because I want to leave --
>>>: I think it is important to say this is a hot button topic that really there is a lot of pent up passion.
MS. PECHT: Can I say something.
MS. BOWEN: Let me say something about coverage because I think we need the basis here. Public hospitals and providers, and that means someone who is part of a state or local entity, not someone who receives assistance from them necessarily, but is run from a state or local government is going to be subject to fight 2 of the ADA. Private entity as Ann Marie was talking about is subject to Title III.
Section 5 04 refers to Section 5 04 if Rehabilitation Act of 1973. It says if anyone receives federal financial assistance they can't discriminate against people with disabilities. That would include Medicaid and Medicare providers, that most, but not all, physicians are. And most, if not all, hospitals are.
There are some physicians who don't take Medicare patients and therefore are not covered.
But it means they can't discriminate. There are specific -- more detailed regulations about medical providers under 504 than there are under the ADA. And these are regulation that are enforced by the Department of Health and human services.
But Ann Marie had talked about barrier removal about one of the foundation principles of Title III. And that means if you have a facility, have you to look at the facility, piece by piece and see if there is some barriers you can remove.
If it is not real expensive to do that, have you to. That means the step into the doctor's office you may need to ramp it if it is possible to do that.
Title 2 and 5 04 have a program accessibility requirement. That means you don't look at the building piece by piece, room by room, element by element, you look at the program as a whole-
So you may have a public hospital that may two or three locations, they may only have to -- I'm talking generalities. They may only make one of those locations accessible at one of those, if when you look at the program as a whole it is accessible. I wanted to give that as a background because there are different requirements for state and local versus private entities. MS. PECHT: All I wanted to say is a while ago I had a case similar to what you're talking about where a state transferred -- program where you could choose your physician to one you had to go through their providers. And a woman who was getting very good care at NRH, here is a rehabilitation hospital in D.C, suddenly was part of a program where the providers did not provide any information. She was sent to acupuncturist in Baltimore. So that is a similar situation. And that is the kind of case that we would be very interested in hearing about because you can address these issues on a systemic basis.
So that is all I wanted to say. If you have a situation like that, I will be happy to have you call me or Amanda and talk about it.
And I also wanted to mention that we heard many stories, as Amanda was describing, about the problems we have and we know personally what the difficulties are.
To help us move our project along, we would still like to hear from individuals who have a specific story that effected them and caused harm so that we, perhaps can use that as a tool to make change.
We have heard enough, I guess, general story, but if you have specific issues you want to discuss we would throf talk about the presentation.
MS. BOWEN: If you have a specific complaint against a provider that receives dperl assistance or a public entity, apart from whether they receive asit stance, you should address the complaint to the Department of Health and human services.
They are the ones who investigate in the first instance. They are the one who have the authority to refer it to us and we can litigate. We only investigate the private entities. I think we got to move on so that people have enough time to talk and then we will take some more questions later. Pamela Dodge will talk to us about how it is really done.
MS. DODGE: Thank you, everybody. I'm happy to be here and after hearing your comments I feel a little like a pioneer, even more than I knew. I have to thank publicly, DEE da lane any. She is a executive director of FISA foundation in Pittsburgh.
>>>: Can you speak up?
MS. DODGE: DEE with FISA foundation in Pittsburgh funded a grant that we applied to at Magee women's hospital over two years ago and allowed our team to develop a program which, I hope, is is a prototype for more programs to be developed in the United States.
And I have to say that we are still learning. We are a working in progress. We are not perfect, but I think we have learned a lot in the last, almost two years, that our program has been in operation and we continue to modify and grow and, you know, just do all those things that you are supposed to do. Magee women's hospital, for a limit background, is part of the president burg medical center we are the teaching Hospital for Women's health. We are also one of the original centers of excellence for women's health as designated through the office of women's health and health and human services.
So we have very much a commitment. It is what we do. So I am going to start. When I sent in an abstract for this program, I really wanted to put this in the context of a model of care that which use in our facility.
I hate to stand in front of you guys. I don't know where to stands. Maybe I just stand over here. Is this okay?
MS. MAISELS: Sure.
MS. DODGE: I hope you can see it. Maybe we should have the lights down a little bit. Would that be complicated.
MS. BOWEN: We can have all or none of them.
MS. DODGE: Let's try. Is that better.
>>>: Yes.
MS. DODGE: Okay. We put the women in the center of all we do. This is our woman care wheel. So when I'm making a decision and other people are trying to make decisions in the hospital, we always go back to what is the impact on the women.
So that is the first ring of our wheel. These are some of the women we serve. Then we add -- whoops. No, it needed to be a little clearer. It wasn't in focus. We also look at different aspects. We look at her health status, lifestyle, ethnicity, social economics, sexual orientation. And we look at where she is in the age, where she is in her period of development.
And we take all of those things into consideration when we are planning with her her health care and helping her to access health care. We also look at behavioral health,
nutrition, exercise, sexuality and what has her past health care experience been. And then the final ring of the wheel -- a little bit -- there. We integrate information empowerment, comprehensive care, quality access, cost effectiveness, research, advocacy.
And the one that I think is most important up there is respect.
Go ahead.
All right. So I'm going to start with respect. And we show respect for each woman by treating her as a mature and responsible individual. We listen to her, we involve her in our decisions. We acknowledge her right to privacy and to confidentiality.
Our staff is educated to understand issues and problems that women with disabilities have experienced.
And I cannot tell you that 100 percent of our staff in the hospital is totally educated. But it is an ongoing process. And we have used a video called "the ten commandments of communicating with people with disabilities as one of the ways to get the message across.
So we train so when a woman come in the front door they know whether or not they should touch her wheelchair or talk to the dog or just really some of the basics of respect for this woman.
Access to health care we think is very important. I also have some other neighborhood centers. And they're accessible in low income diverse communities. So that is one way we provide access.
But with women with disabilities a lot of it is equipment.
So we have a wheelchair accessible scale, a HOYER lift that has a scale attached to it. We have the universally accessible exam tables and we have hydraulic stirrups that go with them. We have a hydraulic stretcher and automatic doors.
Now I'm going to show you some pictures of the equipment and tell you what makes it unique.
The hospital as a whole does about 70,000 mammogram as year. Before we started the center when women called for mammogram appointment if the woman had a disability or any type of need that was out of the ordinary, she was given the same 15-minute appointment every other woman was given. And it was very frustrating because she would come in and it was difficult to accommodate her.
So when we were developing our center, we worked with the imaging director on physicians. And from what I know today there is really no special piece of equipment that is made for women with disabilities to do mammograms.
However, some of the equipment does go very low so women can have a mammogram done while they are sitting in the chair. So sometimes we do it while they are sitting in the chair or we will move them into a special biopsy chair which is what we use a lot. And we can get them positioned. And since we started this almost two years ago, we have successfully done mammograms on women who were never able to have a successful mammogram before.
So there is a picture.
We also have, I have to tell you, the tech in this picture, Lynn, she volunteered for this service. There were two mammography text. When they heard we were opening up the center said, "We want to work in this." it is very important to have staff that are committed to working with women with disabilities because you have to have people who want to be there who have the right attitude, who have the passion and the commitment. I think that is basic to much of what we do.
Here is a woman and she is in her wheelchair and that is our other tech, Jane, who works with us. And we are trying to get her positioned for a mammogram.
Some of the women it may take four or five staff people to get her positioned to help her to hold still. And then you make may get a film back that has to be repead.
So a mammogram can take an hour, it can take longer than that. And when you talk about accessibility to mammography facilities, you know, when you get paid $32 no matter what you do and you can get how many mammograms in an hour out of that with one tech and then you get one mammogram an hour and you need to have the physician, the midwife, the nurse, the medical assistance and the tech helping to transfer, position, hold, the cost increases exponentially and that is one of the difficulties that we all face.
Now, this is a Wellner table and it does go down do 19 inches. It has side rails so women can hold on and help to move them across.
We don't use the stirrups that came with the Wellner table because we found we don't like them. These stirrups are padded and hydraulic. The provider can move the stirrups a very minute distance up and down and sideways to get the woman's legs comfortable. And our patients love them. They tell us it is the best thing they ever came/across they cost about $14,000 for the hydraulic ones.
>>>: The feet?
MS. DODGE: Those feet cost about $14,000, but they are well worth it. I have been able to get funding because we now in our hospital have four Wellner tables and four steps of the stir rups. One we put them in is the urology department. Because many women have urology problems and pel viblg problems so we put a table there because we want to refer women, not just for basic care, but for the specialize care they need. We also have one in the outpatient clinic so that women can have different therapies done. So we have a table there and we have four in our hospital and we are only about a 250-bed hospital, not counting about 60 neonatal intensive care beds, but we are not a huge place.
Here is Shirley. Shirley is one of our patients, I guess I can say that, herly, I'm not violating HIPPA, am I? She said I could.
Thank you.
Shirley is on the wheelchair scale. And we have probably one of the the few accessible scales in our City of Pittsburgh and the western Pennsylvania region.
We have one woman that comes in every week to get weighed. Doesn't come for an appointment, just comes to get weighed. With the multiple sclerosis society, we started a weight watchers class a year ago. So every Saturday about 15 women, with disabilities, meet at the hospital. Our facilities guy goes up and he moves the wheelchair scale down do the conference where they need every Saturday. And they love it.
They have lost, this group -- it is pretty stable. People come in out. They have lost over 200 pounds. And I really would love to have weight watchers have on their website information for women with disabilities about weight, exercise, et cetera. So if someone wants to work on that I will be happy to help but I haven't had a chance to do that.
Two or three more minutes? MS. BOWEN: This is great, but we have other things.
MS. DODGE: All right. Next one. This also a HOYER lift is very important because some of our women are in scooters and they can't transfer to the table. We need to use a HOYER lift to get them up and down. The HOYER lift also has a scale attachment to it. Because women don't know what they weigh. I mean I don't want to know what I weigh. But Mr. Women do want to know. Maybe if I didn't have accessibility to a scale I would want to know more.
You can go to the next one.
Also with equipment we install an automatic door open into the suite even though the hospital is accessible, to get into the suite we had a regular door. So we installed that.
We also had the privilege of having Sandra Wellner come through and give us a tour of our area before we opened and give us pointers on what we need to do.
We do have a deca table. They are not very accessible because they don't move up and down so we had to buy a hydraulic stretcher in order for the women to be proved to the stretcher so they can get to the deca table.
Osteoporosis is an extreme problem with women we see. They have bone loss at an essentially age because they have been im mobile or on steroids and they haven't build up. I can do a whole talk on this. Information, we do have things in alternative format. Right now we is have a deaf/blind patient so we have translate much of our obstetrical material, our LAMASE classes, concept form, she is going to voo form, he is going to sir com sized. We put that in braille. In the midst of her pregnancy we have to have the meal plans done and exchange list done by the American die tet tic association. So we had those done for her.
Cost effectiveness, well, that is a problem and we are just having to keep on working on it to get better reimbursement for insurers because you do not get reimbursed for the cost, time and energy that go into providing these services.
We try to integrate care. We do one-stop shopping.
A woman comes in to see us we have a primary care provider, we have a nurse midwife so she can get her primary care done. We schedule her mammogram on and deck tons same day. She may be wus for a while. She may be there two and a half hours. But it is better for her so she won't have to get transportation to come back and forth. We do try to integrate the care so we can accommodate her need.
Research, I wanted to bring to your attention the Rand study. FISA foundation funded this. And it is a research initiative and we did work on Rand with this. About, you know, what are the problems with financing health care for women with disabilities.
We do have copies of this here. DEE has some, I have a copy and something else to add to our base of knowledge.
And our base of knowledge with women with disabilities with research is not broad. It is very narrow. And I think that is the next step at Magee that we are going be taking, is looking into do more research, now that we have a little better feeling of what we're doing.
One more.
And I just have to end with advocacy. We are trying to raise awareness in our area. We have talked to people at the state level. I prepresented at other national forums to let people know there is working work being done in this area, things can be done.
We think advocacies with insurers and politicians is extremely important. Our center has a woman with disabilities committee with women with disabilities who are our advisors. Shirley is one of them.
We meet every two months and try to guide what is going on at our center. And one of the issues that came up this year that we are doing more work on is intimate partner violence with women with disabilities and care giver violence. So we continue to evolve. And I think by putting the woman at the center of all that we do, we have been able to create a model of care that is accessible, that is accommodating, that is accessible. Right now for the women it's affordable.
Thank you.
MS. BOWEN: Thank you. That is exciting. And advocacy is an excellent segue into our next presentation.
We have Cristine Fortunato and peg McDermott from Connecticut. Connecticut women disability net work.
>>>: Thank you. Before I talk with you about Connecticut's new legislation, and I have handouts here just for the sake of time
I'm going to leave them here and when are you leaving pick them up. If you need it in alternative format, I have the braille, audio, computer, everything you need. In computer we have been working for four years to improve access in gien logical services. It has been spearheaded by the Connecticut women and disability network.
Meg is the current chair of the organization. Although I have to say there have been women over the years who have held the same leadership position and have done an excellent job of keeping this issue out there, that I think silt paying off for us.
Quickly, some of the initiative we have going on. One is called the accessing barriers creating a useful solution project this is is a collaboration with an organization called qual dine, a peer review organization. We have been working to improve access to mammography services by assessing the accessibility of mammography sights in the community, training mammography technicians, having focus groups to find out what the issues are on their end and we do that with women as well, focus groups, training and such. So we feel we are addressing it in a comprehensive manner.
We have educationnal materials. There is a brochure we have created, resource guide, question DOS ask when scheduling a mammogram.
Because we learned you have to be able to meet the provider. You can't just show up for an examination if you need additional time without letting the provider know that beforehand. If you want to have a good relationship with the provider, just being aware of that.
Likewise we do that with the provider. We have educational material for them as well. Starts with the receptionist who maybes the appointment up through the technician. We also have through Planned Parenthood three easy accesses centers in Connecticut. We also have condition wellner tables in four hospitals in the state. There is a initiative with our Department of Public health. So we have a total of eight, maybe night nine table.
Let me talk to you about an act concerning GYNECO logic services for women with disabilities. This is a mandate that was approved by the Connecticut legislature this spring and signed by the governor in may. It is to improve improvement of GYN logical service DOS women in Connecticut.
The Department of Public health and my agency, the people who pay me to do this, are named in the legislation. We are man stateed to present a report to the general assembly by January 1 of our findings. The major components of our act is to identify the barriers and obstacles that prevent women with disabilities from accessing service, obtain review and recommend changes with state agencies in particular and their contractors.
We are particularly interested in creating some standards care, policy of is adation, confidentiality and informed consent. In Connecticut the issue of routine SEDATION has come up so in this legislation we are addressing that, particularly in the Department of Retardation system.
We are inventoring accessible equipment state wide and we are gathering information on existing outreach and public information materials.
This will all be in the outline so you can pick this up after.
The history and really what brought this forward is that we have been successful in creating an atmosphere of aware ps, both with the medical community through the ABCUS project because we involve the Connecticut radiological society in that effort.
Through our permanent commission on the status of women for the state, we have been able to bring the issues forward.
In Connecticut we have a women's health committee that is a network coalition of all of the women's organizations in the state. I think frankly, after hearing us talk about the barriers and obstacles, hearing women's stories, I think they finally got tired of it and said, "We want to do something to resolve this."
It was actually the women's community that gave credibility to what we were talking about and stood with us in writing this legislation, advocating for its passage, lobbying.
We not only had disability organizations, but we had women's organizations coming out and testifying on behalf of this legislation, which was introduced in January and passed.
This is the first time out. Now, granted this is a study that we're doing. But it gives us the opportunity to put out on the table all of the issues, all of the issues and to make some recommendations for change that some will be implemented right away. I certainly envision changes in how some of the state agencies do business, Department of Family and mental retardation and correction, others may require more time and addition fall funding. Some of the anticipated outcomes of this process that involves not only PNA and DPH but a variety of other stake holders. There are consumers at the table, state agency, we have several on statry sharngs gynecologists on our committee, so it is very comprehensive in representing all of the stairk holders.
What I anticipate will come out of this will be first that we are going do clarify and strengthen our state's Department of Public health regulatory and enforcement authority. Just having them at the table. In a lot of ways there is a mirror in front of them, they are looking at how they themselves conduct business. So just that outcome alone is worth all of this. A change in policies and practices at state agencies and with their vendors, group homes, for example.
Heightened public health officials were medical providers awareness. Move toward formulating standards of care and best practices for treating women with disabilities.
In the legislation, ACOG is mentioned, that you have to adhere to the standards. What we are suggesting depend tong women's life situation, her disability, there is some uniqueness issues there that should be addressed.
May be one reason why some physicians do not want to treat a woman with mobility impairment because perhaps they don't know how to perform an examination or what some of the extenuating circumstance might be, the use of medication, for example.
We have some very good OB/GYN in our state who have stepped up to the plate. We need more. A woman should be able to go anywhere in her community and get the services.
We are looking at possibly a legislatively sanctioned commission on disabled women's health. Possibly a unit that fits within the existing Department of Public health. Just that there is always an advocate there, a focus within the state, someone who can be on top of the issues.
And I think we need to explore the interest in feasibility of initiating national legislation.
I think Connecticut can be the guinea pig for other states. And we will certainly look to all of you for your advise, if you had the opportunity to present this type of legislation, get the support. Someone is listening, on January 1, someone will be listening to us, it will be the legislature.
What do you think we should be telling them other than what I have already raised? I think a perfect example is the reauthorization of the national mammography act, which is going on right now there is public comment.
This may be a perfect opportunity for to us be advocating for accessible equipment. Why don't we have universal design of this equipment.
And I think if you want to replicate the strategys in other states, you have to begin working with other women's organizations, develop legislaturetive partnerships and a long-term commitment to making change.
And, as I said, I have got here any presentation an copy of the bill, the legislation for you to have. It is very short and sweet. We kept it that way. But what has been good is the advocates is really driving this. We have been given that permission to do that which is really great.
Meg is going to make comment.
MS. BOWEN: Now we will hear from the grass roolts advocacy.
MS. McDERMOTT: I'm the current chair of the Connecticut women disability network. And we have worked really really hard on access issues for women with disabilities and we have tried very hard to educate women as well as the doctors and radiologists on the importance of the fact that women with disabilities are women first, not second, not third, but first.
And it is really, really important that doctors are educated in this area so that they realize that we are different, but with us out there, talking with them, they will become more familiar with our needs as will women with disabilities and be more willing to treat us.
I really can't say how important that is to me and many, many other women with disabilities today.
And one of the big issues we have worked on is the importance of women getting out there and getting mammograms. Some women don't even -- aren't really able to get out of their homes and go to the doctor and get these very important exams.
But -- that is why we want to bring women out.
How many of you here today have gotten your mammogram this year? The responsibility of this is on you to go and do that. We can have all the accessible equipment in the world, but if women with disabilities don't get out there and take advantage of it, it is not going to do us any good at all.
And, you know, on that note, I really, really can't stress the importance of just being able to take responsibility for yourself. Because from experience I know that people are not always going to be there to do it for you, so you have to do it yourself.
I just really believe that regular breast exams are real important and if you can't do it yourself, you need to be able to ask a personal care assistants to help you, that is another key area that we are considering working with personal care attendants on educating them on how to do that so that they are more comfortable with that duty or responsibility.
And I ask another question: If you have not gotten a mammogram or had monthly -- or taken responsibility to do monthly breast exams, why? And is there any way that we, the Connecticut women disability network, can help you make that happen?
And other than that, I really don't have that much to say because it has all been said before me.
MS. PECHT: It is a lot, though.
MS. McDERMOTT: We worked really hard with the planned parenthood association when we first got the Wellner tables in the state. We worked hard to bring people out, to show them what the table was like but, again, we have had issues since then where women have not really come out as much as they should have to make that happen. So it is all up to each one of you as individuals. I can't make any stronger point than that.
MS. BOWEN: Well, the wealth of information and perspectives is exciting. Are there questions? We can take questions for a few minutes.
>>>: I have concerns about my health. I had mammogram about three years ago in reading the results their response to the mammogram I got was something along the lines of -- and this is not verbatim but because I was in a wheelchair this was not a great mammogram. So it sounded like to them like, "Well, there could have been something there but we wouldn't have found it."
Now, I go yearly to another place and get a mammogram and her welcoming comment to me when I was first there she came to the waiting room and said, "I can't mammogram you."
At that point I was ready to be really rude and leave but I didn't and stayed. And actually ended up having a good mammogram. I was able to work with the machine and my scouter is small enough and I fit in the room.
I don't have an examining table at my doctor's office. She gave me a PAP smear last year. It was about 50/50 it was going to come out because it was bad position. I tried to tell her at the time. I ended up having bad results and had to go somewhere else to get a good pap smear and gien logical exam. I was weighed once in Boston. And that was my husband weighing himself, and picking me up and standing on the scale with me and deducting his weight. That is one during my pregnancy.
MS. BOWEN: That points out the need to take personal responsibility and also the limitation of that.
Are is there collections within states -- obviously Connecticut is at the forefront of this, are there ways to find out where the accessible equipment are, at least people willing to work with women with disability are? Is there like a database?
>>>: Our department of public health is funding us to do survey of all mammogram sites so we can ID where they are and what kind of improvements need to be made.
Successful examining table end up being -- you are supplying information and I will give it to my doctor and I will probably file a complaint against that office because I tried the nice ways of doing things but it is not getting them anywhere. It is an individual thing in the cape area where we choose to have it a priority and we go and find resources and fying it.
MS. MAISELS: What department?
>>>: Department of Public health.
MS. MAISELS: You are the Department of -- with the Department of Public health.
>>>: No I'm with an independent living center. We said access to OB/GYN care is something we want to do.
MS. FORTUNATO: When you do the assessment, the structural assessment is not enough. You have to look at policy and procedures. >>>: Absolutely.
MS. FORTUNATO: Because women have said to us I have to bring somebody with me to stand, they will not provide someone. They will not tell you that is an unwritten policy. When you are accessing it you can ask point blank: Do you have a policy on this or not? Because for some women they don't have anyone to bring, there is a cost involved to bringing someone. I would really encourage you to look at that piece of it. It is certainly something I want to see us build into the second level of assessment that I hope Connecticut will do if question get the legislature to appropriate those funds.
>>>: We know from just my experience alone hate to go beyond physical access, but I appreciate the reminder how important that is.
MS. BOWEN: A couple of questions in the back.
>>>: The center for research with women with disabilities in Texas has been doing research on this area for many years.
What I don't know is what -- if they have the actual research on where these tables and accessible equipment are. But they have been -- I guess the first time I heard about them was in '94.
MS. BOWEN: Center for research for women with disabilities CROWD.
MS. FORTUNATO: The manufacturers are not tracking where the equipment is.
>>>: CROW --
>>>: D.
>>>: At Baylor.
MS. BOWEN: The other person at the back, Stephanie.
>>>: I just want to make one point. There was a study that was done by the Kaiser health foundation, which was talking about that was talking about how the lack of transportation effects women in general, mostly inda jept women and their lack of health care. I know there was some group, I don't remember which one it was, because I'm doing research on transportation on equity for women there was another research that talked about access to breast care with respect to transportation. And when you overlay that with the whole question of accessible transportation and how that affects women with disabilities, I think that is an important aspect to the whole question of accessible health care and GYNECOlogical care.
I guess the question I wanted to ask, despite your comments that you didn't want to talk much about issues other than physical accessibility, one of my personal concerns with respect to medical privacy and the lack of accessibility.
I go into the doctor's office and because of my visual disability, sometimes they say we can't enyou fill out forms. We don't have people to do that. And other times when they are somewhat more helpful about it you sit there in the waiting room with some person reading to you out loud do you have this and have that and you are telling the entire waiting room what your personal medical information is that violates your medical privacy.
Have people come forth to you about questions with respect to that, program accessibility, with respect to forms and medical disclosure?
MS. BOWEN: I'm glad that you came forth with that. I don't know that it is something we focussed on.
>>>: There is supposed to be a protocol. That is a violation of all the basic tenants of getting medical information. It is supposed to be done in private. That is just a basic --
MS. BOWEN: It is a violation of HIPPA.
>>>: And rules before HIPPA.
MS. BOWEN: Right, but I'm saying it is definitely enforceable on the federal level.
>>>: It would also seem to constitute an
ADA violation.
MS. BOWEN: Yes.
>>>: Because the information -- I call up doctor's offices and say can you fax me the form, can you e-mail me the form and it is like, "What?"
MS. BOWEN: You find they are not willing to do that? You they are not willing to sfaz or e-mail you the questionnaire?
>>>: Sometimes they are and/or sometimes it is like, "We don't do that." faxing the form doesn't do very good I still have to have someone fill it out for me. Obviously somebody typed the form one day on a computer.
MS. BOWEN: Right. That would seem to be a pretty easy accommodation to make.
>>>: Seem to me.
>>>: I have two little tidbits from Sandy Wellner's family. She passed away in 2001. And her brother has a -- formed a company to market a new Wellner table which will hold a person up to 600 pounds, they are hoping and also will go down do 18 inches versus the 19 of her old table. It will not be manufacturered by the same company. As I say she starting his own company. And this company is also publishing her textbook on GYNE logical care for whims with disabilities. It will come out November 19.
If you need an order blank or want me to send you one just give me your card and I will make sure you get on the list to get the book. The book will be $59, from what I understand.
MS. BOWEN: We will take one more question.
>>>: I just want to say that I feel very fortunate to live in Pittsburgh and be a part of Magee. But also I want to encourage women to find women or people that will listen to them, that will be on the committee. I have been on the committee for a long time and it takes relationship building and people listening and a good, strong committee of people who really are committed.
And I would like to offer if anybody would like support in developing something for their area, I would be glad to communicate with you and support you in that effort because I have experienced good service, but also you have to be very proactive and you have to say it like it is, even if you think they don't -- might not like what you have to say, that you eventually win people over. And they are like, "She's right."
MS. BOWEN: How would people get in touch with you?
>>>: I could give my e-mail address and my phone number and address. I can leave with you or somebody.
MS. BOWEN: Do you want to just leave it up here?
>>>: I can just give it to you now. My name is Shirley ABRIOLA. My address is 416 REVERE drive, Monroeville is my town, PA 15146. And my telephone number is area code 412-372-5080. And my e-mail address is SJABRIOLA@AOL.com.
>>>: I have been waiting the last conference to do this part. I'm from New Jersey and two years ago we started a grassroots women with disabilities health steering committee. We got funding from our DD council. Which are at the beginning of what Connecticut has been doing but I just wanted to let everybody know that there is this state wide group working in New Jersey about specific health care issues for women and that we would be glad to know from other people in the state what you are doing.
One of the things we are trying to do is to get a center similar to what the presenter with the slides was talking about in our state that would provide one-stop, you know, treatment.
But we are at the beginning of it but we are there, doing stuff and we are going to legislatures. We are working on laws so I just wanted to let people know about that.
MS. BOWEN: We were just talking about how to share some of this information. I understand there are not names and addresses in the booklet. But if you want to -- we can put a sign-up list up here. If people want to put their e-mail addresses and whatever, and if someone wants to take on the responsibility of gathering content --
>>>: You are not listing contact information in the back of the book?
MS. BOWEN: No.
MS. PECHT: I think we are but we're talking about you guys too.
>>>: Oh.
MS. PECHT: I have a pad here. If you are interested in just receiving information, put it in one place and if you have information to share, put -- I will make a separate list and put down what the information you would like to share is generally about and then we can --
MS. BOWEN: Do we want to address?
MS. PECHT: Yeah, contact information.
MS. BOWEN: Leave your contact information and somehow we will get it to everyone, won't we.
Thank you all. I know there are other things scheduled so we will stop the official bids here. If you have other questions and if you want to be on this list.
>>>: Can I just say something I'm from the Washington lawyer's committee and we are filing cases against hospital access so please contact us we have business cards and everything.
MS. BOWEN: Excellent. We talked about that a little bit earlier. Excellent. >>>: I am a disability rights advocate and we are doing investigations of HMO's in California. We have a book about health care rights particularly for women with disabilities. Available online on our website.
MS. BOWEN: Excellent. Gynecology gynecological gynecological. Wellner Wellner
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