the discussion. it is a reminder to us when we talk about energy and energy production, we can't discuss it in isolation. it has to be in conjunction with the water and water access and availability and certainty of it. as we see greater urgency brought about by a change in climate, how we adapt to it is going to be a real challenge for us, particularly as you above-noted that this is a very regional situation, but the impact can go far beyond the region. ..

>> good morning.

we we are here today the oversight investigations subcommittee energy commerce for hearing entitled help or hinder patient care and public safety. as there is a classified briefing as well as votes this morning we are going to waive opening statements in order to get right to the testimony. we will allow members to submit their opening testimony for the record. the hearing last month addressed issues raised on the newtown tragedy and some witnesses told the subcommittee how they care and treat loved ones and we will hear from cover -- my government representatives and family members. it's an important issue. members the reason we are here as members of congress themselves are experts and knowledgeable in many these issues so we appreciate your attention to this. we are here to ask questions and learn the facts about hippa from those who are knowledgeable and

remind everyone we we need to maintained a quorum in the committee room. disruptions will not be tolerated in people doing so will be discharged if needed. we also are asking members to stick closely to the time limit. >> will the chairman deal for just a moment? >> the chairman and i have agreed to all of the opening statements to be put in the record and i think that's appropriate given this classified briefing which was just scheduled yesterday and out of respect to the witnesses many of whom have come from around the country. the chairman and i decided we really wanted to hear from the witnesses. i will say mr. chairman though that this is really an important topic, the hippa issue particularly as they relate to gun violence and so i will, but it's also important if we are being asked to get u.s. military or otherwise involved in syria in this classified raising his with the secretary of state so on behalf of everybody i want to apologize to the witnesses.

some of us may be coming in and out that we will read the testimony and we will make sure we know what's going on so thank you very much. >> i want to let members know i communicated with majority leader eric cantor last evening and he and his staff are working on providing a special briefing for family members or this committee. you are aware that you will testify under oath. the chair dices you under the rules of the house you are advised by counsel. do you desire to be covered by counsel during testimony today? please rise and i will swear you in. do you swear to tell the whole truth the full truth and nothing but richard?

you make each now give a five-minute opening statement that let me introduce the witnesses for today's hearing. we have mr. leon leon rodriguez. mr. rodriguez is the director of the office for civil rights in the department of health and human services. we also have professor mark rothstein at the louisville brand is school of law and the school of medicine. he holds a herbert f. old chair of law and is the founding director for bioethics health policy and law at the university of louisville. make sure your microphone is on ample it close to your mouth. thank you. you may begin. >> good morning mr. chairman, ranking member degette and members of the subcommittee it is an honor for me to be here today in my capacity as director of the office for civil rights at the u.s. department of health

and human services and i thank you. hhs is an enforcement agency for civil rights and health agency rights. osi of handles development and education for compliance of the laws in those areas. our office plays an important role in ensuring that an individual sensitive health information remains private and secure and individuaindividua ls are able to exercise important rights with respect to their health information. one of the underpinnings of health care is hippa depends on their trust and their health information remains confidential. hippa ensures that health information can flow from important and necessary purposes such as patient treatment, obtain payment for health services and protecting the countries public health and safety. i have often said that hippa is meant to be a valve and not a

blockage and it is above all meant to maximize the welfare and interest of patients. as such i look forward to discussing the existing flexibilities within hippa. hippa recognizes the vital role that family members play in supporting patients with significant illness both physical and mental. i have read the family testimonies that were placed in the record and are heartbroken by them so therefore take seriously this committee's desire to get to the right answer on these issues. to directly address the concerns underlying this i will discuss the path that hippa offers providers to disclose information received during treatment for health and safety of other patients. for example, hippa permits personal health information to be used or disclosed without an individual's authorization for health treatment and payment for the business operation is covered. hipaa also prove presents public

health activities for law enforcement purposes and to avert serious and eminent threats to health or safety. i would like to talk about disclosures to family members and friends of patients. this is an important area. ordinarily a petition -- physician does not object to information being either shared in front of family members or friends or with him would family or friends. hippa provides a clear avenue for disclosure in those cases. additionally it's incapacitated and when i same capacity do we mean for that were to be given his full ordinary meaning. health care communicates to family and friends of the patient if the provider determines based on their professional judgment that doing so is in the best interest of the individual. this is i think an important point to underscore. hippa is meant to revolve around the professional judgment of the

provider as to what is in the best interest of the patient and not meant to supplant that judgment. so for example a nurse discussing a patient's medical condition to a patient's sister or his unconscious or otherwise incapacitated doctor and make the judgment to share information with family members. similarly, hippa recognizes that professional codes, professional standards of care recognize the duty and authority to warrant a situation where a patient may pose a danger to themselves or others or may have disclosed information indicating a threat by another to either themselves or a third person. in those cases where there is a serious and imminent risk of harm to health or save the hippa has a clearly recognized exception for disclosure in those cases. and when i say an imminent risk of health or safety it's not

simply an individual going out to the commit a violent crime but it covers a number of different possible scenarios that a health care divider particularly the mental health care provider may encounter. we take our applications to educate providers and patients on these flexibilities seriously and it's for this reason that we and in the administration took the initiative in january after the tragic events in newtown to issue a letter to the nation's health care providers clarifying these important points. finally i want to talk for just a moment about the nature in which we utilize her enforcement authority. we focus primarily on long-standing broad-based security threats. we have never taken enforcement action because a provider has decided it's in the best interest of the patient to disclose information to a third party. thank you mr. chairman and thank you ranking member and members of the committee. >> thank you mr. rodriguez.

mr. rothstein you are recnid for five minutes. pull the microphone toward you if you will. it's still not on. bullet roe's. can you tell us the microphone is on? >> how about now? >> there you go. it's a government mike said during the sequester they are down 20%. >> is my voice. mr. chairman and members of the subcommittee by name is mark rothstein and i'm on faculty those university of louisville that i'm testifying them in digital capacity and again let me apologize for my laryngitis. in my testimony this morning i want to make the following three points. first, as the hippa privacy rule is essential to patient care and public health and safety. second exceptional privacy rule permits health information were important public purposes and third additional measures could enhance the effectiveness of the privacy rule.

ever since the hippoat oath medical codes of ethics have been established by physicians to maintain the confidentiality of patient health information. without assurances of confidentiality pages will be reluctant to devote sensitive information about their physical and mental health or behavior and lifestyle that could be vital to the individual's treatment. the privacy rule codifies this crucial requirement of confidentiality which is necessary for ethical and effective individual health care. health privacy laws also are essential to the protection of public health and safety. to illustrate this afternoon i will be returning home to louisville. at lunch i do not want my cook or servers to be someone who is reluctant to get treatment for hepatitis a because of privacy concerns. i do not want my taxi driver someone with chronic tuberculosis who is afraid to get ongoing treatment.

i don't want my flights placed at risk by an air traffic controller with a mental health problem or a pilot with substance abuse who was deterred from obtaining behavioral health care. confidentiality protection therefore serves the patient and the public's interest. although we were all deeply saddened by the recent horrific loss of life caused by some violent mentally unstable individuals we should appreciate the potential consequences new excessive mental health requirements were enacted. each year in the united states there are over 38,000 suicides and over 700,000 emergency room visits caused by self-inflicted harm. an estimated 26.2% of people in the u.s. have a diagnosed mental disorder. any steps to lessen confidentiality protections or the unnecessary disclosure of mental health disclosure could

leave the vast numbers of of individuals to ford probe mental-health treatment and potentially result in significantly more suicides, self-inflicted harm and unted meal illness. second, the privacy rules specifically permit 12 types of health information of importance to the public and therefore the privacy rule does not hinder public safety. among these 12 categories are disclosures for public health activities about victims of abuse and neglect or domestic violence or law enforcement and to avert a serious threat to health or safety. the 12 public exceptions are permissive. the privacy rule does not require any disclosures. the disclosure publications arise from other sources such as state public health reporting laws. the effect of the public exceptions is to permit otherwise required disclosures without violating the privacy rule. third, for the last 10 years,

inadequate health professional and patient outreach and education programs have led to a lack of understanding of the privacy rule by many affected individuals and covered entities. a common problem is that some disclosures permitted by the privacy rule are not -- perhaps out of ignorance or an overabundance of caution. the 2013 promulgation of the omnibus amendment to the privacy rules make it an appropriate time for hhs to start a new program of public and health care provider education and outreach. in conclusion the privacy rule i believe is essential to individual health care and public health and safety. additional efforts to increase understanding of the privacy rule by the public and covered entities as well as the public purpose exceptions will enhance the effectiveness of the privacy rule. i thank you for the opportunity to testify this morning.

>> thank you to both the gentlemen. during the subcommittee's march -- we had several mental bonuses and pointed to hippa as an obstacle to getting the help he needed. one of his sons doctors judged them to be quote an extremely high-risk for suicide with a bad outcome unquote. more than once and yet fail to share this information with pat or his wife. he took his own life months later while living with his parents and it was only after his death they were able to obtain their son's medical roots. is this an example where hippa worked as intended mr. rothstein? >> no, but if hippa were followed to the letter that would have permitted the disclosure. >> do you agree with that to? does hipaa bar revealing information to the parents of a young adult living with their

parents? >> no. >> mr. rodriguez? >> underserved some circumstances you might. it most circumstances there would be path to disclosure. >> doesn't allow to provide information for parents of young adult receiving health care and their parents health care plan to the age of 26 so if they are still dependent? can you tell me where the cut-off is? >> the cutoff in terms of the patient's ordinary ability to object to the provider's disclosure is whatever it happens to be in the particular state. >> so pages 14 of 14-year-old could decide if the information is too disclosed in another state would be 18. spare would assume it would be 18. >> are you demilio with the term anosognosia and what that term means? >> i am aware of it chairman because i actually read the majority memorandum for this hearing.

certainly going back to the discussion of serious incapacity in the discussion of serious and imminent risk of harm, certainly situations where that condition either renders the patient to be in a condition of and capacity or where the consequences of that condition being unaddressed are at serious risk of imminent harm. health and safety and that doesn't mean going out and committing a gun crime. it can mean it variety of different things that can be extremely harmful to that patient and yes in those cases guess you could disclose without consent. >> mr. rothstein do you a great? >> i agree. >> sound bite from what i read from your testimony what you said here that we may find a lot of providers are misinterpreting or overinterpreting the laws on hippa to prevent them from disclosing it to patients. is that what your sex jet --

suggesting is happening here? >> we have observed in a variety of areas of enforcement that there is anxiety about our rules and all the wrong places. if you look at where we have taken enforcement action it has been focused on institutions that have had long-standing failures to protect the security of all of their patients information. hippa was designed to respect the provider's judgment as to their patient's best interest. i think that is often unfortunately misunderstood and that's one of the reasons we use that verification. >> this gets to the crux of the matter of why we are here today. we will hear testimony from experts and some parents. what if the provider decides not to show the memo of information for those reasons and what if they patient doesn't sign the release? the patient doesn't even recognize they have a problem and the parents even go to court and say we would like to have

these records reviewed. i can't release his records but the judge can and the judge says no and yet a condition they still exist and that patient is at risk for suicide of harm to themselves. what then? >> one thing we have to keep it in mind in answering this question is hipaa is not the only relevant latte of the law so we are also talking about professional ethical standards both the american psychiatric association, the american psychological association and clear duties of confidentiality in creating exceptions as we do and in fact our goals are built around both those ethical duties. for example and tara soft versus california board of regents case. clearly in the kinds of scenarios where you describe where a provider is aware of a risk of suicide it very clear

situation where we are talking about serious risk of harm hippa does not stand as a barrier even in the absence of patient consent. anybody who can help the patient, that's a critical element and that person can lessen or remove the threat to the patient and if that's the patient -- parent and that is where it can go. >> thank you mr. chairman. i think we can all agree that hippa provides many important detections for people's medical privacy and we have a history of bipartisan agreement that people need to be able to keep their senses of health information private. so i think we would agree with our witness on the importance of hippa but also we need to recognize that in many of these mass shootings that we have seen and of many mental illness situations where someone is a risk to themselves and their families there are clearly problems without providers and institutions are interpreted

hipaa obligations. it seems to me if someone is a danger to themselves or to others that would be up to the providers decision to advise the parents or other responsible. is that correct mr. rodriguez and mr. rothstein is that correct? i'm going to say i'm not going to blindly give -- defend hippa. we heard in march about providers interpretations at hippa and how they can be barriers and trading not just a mentally but also the physically ill. i myself as a parent, if a diabetic child and even before she was 18 years old sometimes we had a hard time getting providers to give us information. that's not because of hippa. it's because the providers misinterpreted hippa so when we hear these tragic stories today and i'm hoping i will get back

to that, i think we need to really take that seriously but we need to look at ways to educate providers. in the aftermath of the murder of 32 people at virginia tech we learned that hippa interpretation preventive mental health professionals from appropriately sharing information. misinterpretations of hippa and other private laws were identified by the gal and by president obama's gun violence task force as an obstacle to reporting individuals who should be barred from gun ownership to the backgrounbackground check system. so mr. rodriguez i think you would say hhs has tried to be responsive to these concerns that interpretations of hippa and other privacy rules have created obstacles. is that correct? >> that is correct. >> and in fact you sent a letter out on january 15 of this year to help providers around the

country, trying to delineate exactly what hippa says, correct? >> yes we did. >> tell us what you said in the letter. >> we thought that because of all the concerns about the interaction between situations where a provider is aware of the information in a danger to the patient or others and some of the events we have heard about in recent years that it's important to remind providers of both the duty, the permissions under hipaa but also to remind to consult with the applicable standards and applicable law that gives them a clear pathway to report any situations. >> hhs issued an advance notice of rulemaking to solicit public comments on hippa and received various -- due to mental health concerns and can you explain

briefly why a notice of rulemaking is necessary and what information you are trying to collect? >> in most states disqualifying information actually comes from the judicial system which is not covered under hippa. we are a where at least generically about some examples. new york until recently was one very clear example of states where reporting occurred from -- covered by hipaa and reporting would ordinarily have been prohibited by hippa. we want to understand where and to what extent hippa is in those cases and take appropriate steps to remove those barriers. >> just one last question. the affordable care act extended insurance to the agent of 26, correct? yes or no. but it didn't say that individuals up to the age of 26. maybe this is a good question for you mr. rothstein.

it didn't individuals to age wine six were considered legally dependent of their parents because they are getting health insurance. is that correct? >> yes. >> in fact the provision of the affordable care act didn't even talk about hippa dfid? >> correct. >> that's correct here mr. chairman i would ask ask unanimous consent up at the january 15, 2013 letter from the director to the providers into the record. >> without objection. >> thank you very much. >> thank you. the gentleman's time has expired and we recognize chairman gingrey. >> thank you for calling this very important hearing. i'm sitting i am sitting here thinking as a physician member of the subcommittee, that it is kind of ironic that this law passed in 1996.

hippa is almost, sounds like the hippocratic oath which of course in the first place is do no harm. it's really in the way has nothing to do with the hippocratic oath which is hundreds if not thousands of years old but in a way it does touch on that in the first place do no harm in regard to how you treat a patient but also this information-sharing because if it's not done correctly, there is potential for great harm not only to the patient but to the general public so i just think it's sort of ironic. mr. rodriguez when was the last time the office of civil rights under hhs updated the health care providers guide to the hippa privacy rule posted to the ocr web site and how about the patient's guide? the same thing.

>> congressman, doctor we are updating on a routine basis as different issues. as you know we issued a rule that profoundly affects consumers and providers in january of this year so we have been busy posting updates. that was the january 25 rule? >> that is correct. similarly we identify the concerns after the new town shooting. we took immediate and decisive steps to put up this reminder about the manner in which hippa detracts with the duties. >> these guys answer common questions about hippa, correct? have you ever received input from the general public or the health health health care providers about the effectiveness of these up dave's? >> we do. we speak routinely to consumer groups and provider groups. my door is always open.

in fact it took the initiative this morning speaking with several family members today -- that are here today. i want to know these concerns. >> i'm going to come right back to you but mr. rothstein are you familiar with these guys? to have any sense of how effective they are? >> i'm not sure how effective they are but i can comment generally about the outreach and education program and with all due respect to ocr and hhs, i think we have a major problem in this area. but if you read the regulations, there are ample places where these kinds of issues and the problem of notifying parents and the problem of notifying individuals who are at risk is spelled out but hippa is a very misunderstood regulation. it's misunderstood by the public. it's misunderstood by health

care providers, -- >> let me interrupt you to say that i fully agree with you and as a physician for a long time, i came here 10 years ago, i knew that and i think, in fact i wonder if some physicians don't hide behind hippa just to move onto on to the next patient and not want to be bothered with an uncle or cousin or in regard to questions about their loved ones. i hope that doesn't exist to much but it's something we need to think about. let me go back to the director of the office of civil rights, mr. rodriguez. how does ocr measure? now i think when i was talking to you just a second ago it sounded like more anecdotal from your perspective but how does ocr make the clarifications that you have referenced for the 25th of this year?

for example have the number of privacy rule complaints filed under the various incompla categories have been trending downwards with every further clarification and hopefully this most recent one from ocr. does the ocr keep track of these? do you think this will be a helpful metric to track in judging the performance, your performance of your outreach and the patient? is. >> to answer the first part of your question congressman it has remained steady and effect is grown slightly over the years since year since we commenced enforcement. we have received something in the order of a think approximately 80,000 complaints since we began receiving them and the amount is fairly steady over the years. part of what's going on here is hipaa, you reference 1996 but the rules didn't become final until 2003 and 2005.

so there has been a learning curve over the years for consumers and providers to understand what hippa requires and authorizes and it's really meant to be designed for a very wide friday of health care scenarios. i agree generally that our caseload is certainly an indicator and i don't think it's the only indicator of how well folks are understanding the requirements. i certainly agree with that position. i think there have been surveys but i'm not able to speak to them specifically right now in terms of where patient concerns are where provider concerns are and certainly we hear a lot of anecdotal information as you describe. >> is to chairman thank you for allowing the witnesses to answer and i yield that. >> mr. braley for five minutes. >> thank you mr. chairman for holding this very important

hearing which deals with the ongoing struggle between patient privacy and protecting the public safety. these are not easy issues to deal with. but i think part of the challenge we face an part of the concerns of family members who've been dramatic impacted by our inability to solve this problem is that these particular provisions you have been talking about mr. rodriguez are commonly known as the duty to warn provisions. to most of us who understand the duty to warn, it duties and mandatory application not a permissive requirement even though i understand completely your explanation of how this permissiveness disclosure is subject to state laws dealing with mandatory disclosure. i think many health care professionals particularly mental health care professionals look at the hippa language and c. it's permissive and that's the end of the story for them. i would like to hear from both of you, how are we educating the

public and more specifically mental health carerovirs about this bridge between supposedly mandatory duty to warn provisions that are actually permissive and state law requirements that might need compensatory? >> so, it's one of the issues that i think the drafters of our rules in this area were attempting to tackle. we are talking about and you are correct we are talking about authorities. in other words when we are talking about parents there we are talking about the duty to warn or to protect. >> based on state law, not based on the language of hippa. >> hippa is meant to get out of the way of those authorities and to clear eighth plane for those duties and authorities to be utilized and implemented by providers and professional judgment to really be the hallmark of when disclosure occurs. >> one of the first forms we

have in on the subject one of our witnesses was pete early who wrote this book about his son's journey through the mental health system and criminal justice system and he noted appropriately in here that in 1963 president kennedy signed a national alplaus for congress to spend up to $3 billion in the coming decades to construct a national network of community health mental health centers and then notes on the next page the congress never got around to funding or financing community mental-health centers of the process of deinstitutionalization moving from state mental health institutions to community basements of health care that were supposed to happen instead became a process for more and more people wound up in the criminal justice system and we now have law enforcement officers who are providing front-line mental health care and i think the families of some of the victims who have experienced first-hand the loss of a loved one because of our

inability to bridge this gap especially when the patient is accompanied to a treatment facility by law enforcement officials who have the duty to protect the public safety and they are not provided information about the release of that patient even though there may be a prior history of threat that we get to the point warrior protecting the patient's privacy and at the same time making sure that we aren't locking the disclosure of information that can protect the public? >> i certainly think we need to continue our educational efforts and again that is why we covered it in the professional media so i think the reminder we sent in january was something that was really him braced by the mental health profession is to remind us that at least hippa and i can account for all the professional codes and state laws that apply here but it least hippa in those kinds of situations where danger is posed does not stand as an obstacle to providers acting in the interest of the patient and

of public safety. it's also worth noting that there is a countervailing concern that patients who fear that their information will not be confidential won't get treated and that is i think why the congressman talked about that delicate balance. that is the delicate talents that health care providers are trying to strike. >> mr. rothstein one of the concerns that mr. early raises is that if we have a child in a divorce proceeding or custody proceeding the number one role of the court system is to decide what is in the best interest of the child. that is their principle locus and yet when we have adult patients who are getting mental-health treatment who may or may not able to make decisions about their own treatment needs oftentimes the legal criteria are not what's it in the best interest of the patient of protecting the

patient's wishes from a legal standpoint and often the advocates focus on that rather than getting the best treatment option that would benefit them and in society. what are the obstacles to deal with that? >> is a very difficult question. the immediate test would be whether the individual is competent and if the individual is competent health care providers tend to overlook all the other tests. if the individual is competent and a threat to self or others then that overrules the competency issue. if the individual is incompetent and unable to make reasonable decisions about his or her mental health than the confidentiality protections would not apply. >> thank you. >> the gentleman's time has expired. we now recognize the gentleman -- gentlelady from california for five minutes. >> thank you mr. chairman and thank you again for holding this very eerie important mental

health hearing. especially in lieu of the forum that we had a couple of weeks ago with the family members. that was a very important emotional and revealing discussion that we had which brings me to some of the questions that i have because i practice in health care. i'm a nurse and my husband is a dental surgeon. hippa can sometimes get in the way and as health care professionals i would say that you would typically err on the side of protecting the patient's confidentiality and yourself. as a health care professional. mr. rodriguez, i would like to ask you, since the implementation in 2003, according to my information hhs has received over 79,920 hit the

complaints. what is the procedure when a complaint comes up? >> sure. the first thing we do is assess whether it's a hippa complained at all or whether the complaint is about some other issue outside of our jurisdiction. if we determined we do have jurisdiction we then conduct an inquiry into the allegations. if we determine there were violations violations relative to hippa requirements we work with the entity ordinarily talking about the exception terms of our monetary enforcement program. work with the entity to correct whatever the deficiencies are in their practice going forward to be compliant in those areas. through high-tech as you know we received enhanced authorities particularly directed at the insurance of the security of

account information. since hitech was passed on enforcement focused on security rather than use and disclosure issues we are talking about here. in fact it's been a priority of mine to grow our enforcement to protect the confidentiality while electronically maintaining information. >> mr. rothstein can you tell me since implementation of hippa, brings me to the next question. have there have been significant lawsuits filed? is that something you would have information about with alleged hippa violations? when i say losses against health care professionals? hippa does not divide for it a cause of action. there have been a few lawsuits alleging invasion of privacy. >> so would have to be -- >> would have to refer to hippa

violations. >> there again i get back to the issue of health care providers who would err on the side of you know less information is probably better again always looking out for the patient and unfortunately always having to cover your own self. dad is one of my areas of concern with hippa because i do believe it's kind of a gray area and left up to much am -- interpretation. mr. roderic is my final question here, have a little over a minute. do you have a sense of how often hospitals and staff actually go over this hippa regulations and make and make sure there are up to date? is that done on an annual basis? >> it is congresswoman a variable. we did an audit program last year which was from another program requiring using hitech

as a pilot and we found a wide range, we found some institutions that take those obligations seriously and do them on a regular basis and ensure that new employees are trained but there are also many providers for that is not the case. the compliance matter is important. >> there again as unfortunately so many things fall on this information i think this is definitely one of those areas. thank you very much and i yield that the remainder of my time. >> i recognize mr. butterfield for five minutes. >> thank you mr. chairman. thank you very much. i will address this question to mr. rodriguez. following the new town tragedy president obama took appropriate action by clarifying to health care providers in writing their duty to warn long force meant

authorities of threats of violence and first of all is that true? >> that is true. i signed a letter but it wasn't under the president's direction. >> that would lead me to my next question, was it a letter or executive order or a letter from the office? >> was really a reminder of existing duties under the law and also of the administrations emphasis that these authorities to warren and these duties to warrant should be fully exercised to protect the public safety. >> has that action had any impact as far as you can determine? >> it's had an impact in the sense that there has been renewed discussion about these issues. there was extensive industry media coverage of the letter and so therefore we believe based on that it reached the folks at needed to reach particular doesn't that health providers. see how many letters actually went out of your office? >> they were posted on our web site and disseminated by both press release and various

listserv's that hhs has. >> can you describe mr. rodriguez additional ways that health information technology or clinical health act that we passed in the recovery act, how it improves privacy and security requirements? >> i appreciate that question. first of all it is done so by bringing business associates within the ambit of the privacy and security rules. that is the contractors who serve health care providers and in fact often come into possession of large quantities of health information. we now directly regulate them as health care providers before that. it increases penalties for violations of hippa which we have used extensively for security violations and it also establishes requirements that reach health information and needs to be reported to our

office and in cases of larger breaches also will be reported to relevant media that will be seen by the affected patients. >> can you describe the training and medical officials received to ensure they appear to hippa? >> sure. to my knowledge, and i wouldn't consider this a conference of answer. certainly training on hippa in many professional conferences. in fact we actually have prepared a series of videos to be posted, that have been posted and several more that will be posted on netscape including some better by the way relevant to the topic we are discussing here that discuss various aspects of privacy and security rules. we are particularly concerned about smaller providers who don't necessarily have the resources of larger institutions so we are looking for opportunities to reach them. >> also understand there are medical schools are regularly touch on these issues as well.

>> is minder standing that health care providers covered by hippa must verify patient if the privacy of their health information is reached. what method do you use to notify those individuals? >> they can be notified, they should ordinarily be notified in writing and again when in certain cases provide for notification to the media. >> all right and finally dr. rothstein even with hippa protections we have heard that privacy concerns can cause individuals to actually avoid treatment. could increasing information-sharing through the hippa cause fewer individuals to seek treatment? >> that certainly is a concern, especially individuals who have sensitive information and where it will be disclosed, yes. >> all right mr. chairman i yield back. >> i think the gentleman.

dr. -- is a member of the committee and the lat allow him five minutes to ask questions. >> thank you chairman murphy. i have the sense that you two are incredibly bright and well-versed in in the slot and is totally divorced from the reality of the er physician seeing 20 patients on a shift and at 3:00 a.m. there's a person it comes than with these issues. i will just tell you and i will also tell tell you that positions. the federal government. they understand that if the federal government comes after them and grabs them in in their legal arm the physician may ultimately win but will be destroyed in the process. i listen to what you say and that we would allow certain forms of communication but i also say the maximum penalty is 1.5 million paid when the physician is having their in-service on hippa that is what they remember and when they understand it's permissible not

to give information with, but you may get in trouble if you you do, i will tell you that guy or gal seeing the patient at 3:00 a.m. doesn't have your expertise but what they do have are examples of physicians who have been grabbed by the law and not let loose and tell everyone of their personal resources has been exhausted. now that is just a common incredible frustration with the sense of the federal government is denying that the american people have no reason to fear and indeed it has great reason to fear. people act cautiously. that is my rant. i apologize. we say that we communicate with the family if there is imminent danger but what if the patient is noncompliant? can the family say to the mother of the adult child who lives with her, your son is not taking his medicine and therefore we need to do something about that? can the physician do that?

>> so again we go back to the idea of serious risks to health or safety. we are not talking about imminent danger in the sense of somebody going out in it certainly includes that scenario but it's much robert the map. if the patient's health with the seriously adversely affected and the providers implication of that information to the parent would provide a way of eliminating or reducing that threat hippa provides clear authority. >> a specific example of patient is bipolar and the medicine may no longer be used but assume their lithium level shows a slow and the patient is not taking their drug. we have documented that. can the docs say to the mom -- >> we were also talking in cases of incapacity -- >> of what?

>> of incapacity. >> i'm not saying incapacity. when the level falls they don't immediately become incapacitated they are on the potential verge. >> then i think the pathway, if the result of that would be a serious consequence for that individual's health than hippa provides a path for those communication's. >> there seems seems to be a little bit of wiggle room there. a guy can get back on the dose and bring him back up to snuff it i'm not sure the physician would find the safe harbor in that kind of answer. >> i think the greater safe harbor congressman would be this. we have received 80,000 cases since we began enforcing and only 12 of them have resulted in monetary penalties. >> what you are talking about is a failure to see a patient 20 in a shift at 3:00 a.m. in the morning that doesn't have your expertise. that is a reality and i can tell

you what you hear in that in-service is that if you violate hippa they will turn you every which way way but loose. i can tell you that is what the in-service does because i've been there. >> i would love to see those in services because it's not consistent. >> secondly if the health care providers not permitted to share health care information with the family or friends of an adult and told by the provider not to do so what if that patient is incompetent? would have at this point in time they are not lucid? they think there are black helicopters circulating and their mom is the pilot of one of them. >> that is why i mentioned, that certainly in cases of incapacity and certainly incapacity can include a situation where a patient is far from lucid. in those cases there is also a basis. >> sometimes lack of lucidity is in the eye of the old holder.

there is a "wall street journal" article about -- in which the young man was released and killed his mother with a hatchet. if he is lucid enough to be released -- i'm sar am out of town. i yield back, i'm sorry. >> i will asked that everyone be permitted one minute for additional questioning so we we can get onto our next panel. mr. rodriguez as you are aware confusion over hippa has prohibited them from sharing 1.5 million records with the national instant background check system on persons who have been involuntarily committed to mental health treatment or deemed incompetent by a court of law and are therefore prohibited from owning a firearm. our committee sent a letter to hhs on february 13 asking about hippa interfering with this next list.

i know that hhs has now announced with the soliciting feedback on hipaa reform. why do you believe states are not uploading those records? >> i certainly have heard of hippa as one of several different reasons so i don't understand hippa to be the only reason. i know strictly in the case of new york state the reporting was coming out or the reporting would have had to of come out of what was i hippa covered entity and therefore reporting would have been prohibited. we are not looking to eliminate that kind of their ear. i don't know if there are others. [inaudible] thank you. >> mr. rothstein were talking earlier about some of the challenges faced with the incredible burdens placed on law enforcement officials our team of system to provide front-line mental health care.

this has been a dramatic shift in what has happened since congress passed legislation trying to promote community-based mental health so we now have this long learning experience and people who care about the rights of the mentally ill like i do, people who care about protecting public safety like i do want to know what we have learned from these experiences as we move forward in trying to create a balance system that is protecting the public and the rights of the patience to get the best possible treatment when obviously we have been failing. what can we do about that? >> well, mr. braley it's a difficult question. on the one hand we need to increase funding of community mental health service. that's for sure. what we can address at this hearing today is the importance of getting out the message of what hippa does and does not require. one of the problems overall is

that hippa is intended to be a -- above which medical ethics and state law would take place but in many areas including mental health areas it's the floor and there is nothing above it. >> if you can offer a response for the record we would appreciate. mr. gingrey you are recognized for one minute. >> thank you mr. chairman. i don't up i can do this quickly. mr. rodriguez on january 25, 2013 hhs published a rule that makes a quote significant modifications to barring third parties to patients for purposes of identifying potential beneficial health opportunities. for instance, many drug companies use third parties to help identify patients in need of care for purposes inclusion in clinical trials. some of these including those for my own district have chronic

illnesses which no treatment option exists. with the server still be allowed if such a company did not first get the patient's consent? [inaudible] >> thank you. i yield back. >> i'm a little concerned. you mentioned 26% of the people who have a diagnosis of a disorder in one year, but that really isn't much smaller percentage. >> of course and those are the folks that are -- believe me i speak from personal experience of family members and friends who've been in the situation. don't you think it's a little disingenuous to say okay here's a group that truly are out of it as opposed to this 26% that of situational depression? wouldn't it be better to focus on that group for their sake or

their families take? >> absolutely. the point i was trying to make was, if legislation were did that made all mental health records more disclose a boat -- >> so you would accept smi and are very guarded circumstances as opposed to the broader -- >> that's correct but i'm worried about discouragement of the 26%. >> i would say someone who is schizoaffective oftentimes does not have that and i think we have to be honest about that. they have a break. as a guy who has worked with such patience and has been close to people associated. i yield back. >> thank you. mr. rodriguez and mr. rothstein thank you so much for being with us and we appreciate your availability for future questions. as they are stepping up we asked the folks to get ready for the

second panel. as we continue on with our previous hearing on after new town and also this one on hippa this committee is exploring the issues of a wide range that deal with mental illness and proper treatment etc. because of our concerns. i want to make it very clear for all members and members of the audience and people who may be watching this also, at no time does this committee had any time communicate that those with mental elma's are responsible for violence. we recognize that the victims that they are 11 times more likely to be victims of violent crime than the nonmentally ill and the vast majority of people with mental illness are not violent. it's important to understand that. could the next panel take their seats and we will move forward? as you sit down i will be introducing you. on the second panel we have dr. richard martini a professor of pediatrics and psychiatry at

the university of utah school of medicine and the chair of the rancrtment psychiatry primary medical center in utah. for full disclosure i want to say when i was on the staff he was one of my students. how time flies. ..

gm has an important story to share it does about these issues. >> thank you. the center for democracy and algae. as a practice of taking a testimony under oath. the chair then advises you are entitled to be advised by counsel. do you advise the council today? raise your right hand and i will spare you had. do you swear the testimony about to give us the truth, altered to nothing but the truth? the chair recognizes all of the participants answered the affirmative. you're not wrote the subject to title 18 section 1001. give a five-minute summary of your right testimony. i now recognize dr. martini for five minutes.

>> good morning, chairman murphy, members of the subcommittee. what to say i'm an immediate passport member of the american academy of psychiatry who paid for my travel here today. thank you for inviting me to come and speak with you about hippa applications in clinical practice. throughout my testimonial review patient summary is based upon clinical experience that do not include easily identifiable information. they are certainly more straightforward in the patience and minor and not emancipated. parents or primary caregivers are involved in the process to not only support the patient, but i've been in psychiatric care. they do not typically recognize the nature of behavior or emotional problems and this is one reason as well as other pediatric mental health professionals trained to about families in diagnosis or treatment. this improves outcome.

all pediatric specialties start of with adolescents into young adulthood for me. as almost completed timing many are not prepared for responsibility of those patients had experienced chronic medical analysis and psychiatric disorders. families provide the framework for care in many aspects of their life. one of my patients with a mild form of autism, developmental delay was determined to move out of the home once he was employed. the parents do however he could not manage his money, that he was emotionally react when faced with new experiences and could not track vacations. nevertheless he did not want parents involved in routine care. for us to parents to go to court and state their son was not able to care for himself msb dependent. the ruling in their favor is, to close in psychiatric treatment

real progress. p. psychiatry spent negotiating communicatio bween parents and children. we don't discourage anyone accessing care, specifically those who would not seek treatment or involve parents. however, the application of hippa regulation should be a negotiation at the patient in his early 20s suffered a long history of kidney disease. he was in and out of the hospital in the company of his mother. he came into treatment because he was angry and depressed over the circumstances of the disease and subsequent transplantation. i want to love the mother refused because he was concerned how disappointed she would be given everything they've gone through together. he was in treatment for a year and on antidepressant medications and dropped out of treatment because it is too difficult. two years later i ran into this position. he told me he discontinued his medication and went to renal

failure and died. psychiatry should respect the individuality of the young adult of legal protection of hippa and his family were necessary to support treatment. i recognize more communication less privacy risk for serious mental onus is a significant change in the attempt of the lot but must we wait for a risk for an arm before seeking help from parents or family. both the confidentiality fix situations relatively more common among adolescent and adults by going to college. parents are told even though they pay the bills we will not have access to information without the students permission. one such patient with a history of congenital heart disease wanted to go away to college. her parents wanted to stay close to home. she prevailed within three months of going to school. the student health center knew she was sober without permission could not contact parents feared

if the patient had a serious disorder with immediate consequences come in the family may not find out until they receive about 30 days after the event. if there's a bias, should it be towards parental involvement? fits right to do in the best interest of the patient while preserving his or her right to privacy and protection under the law a basis for family communication regardless of the wishes have been raced to suffer others. thank you, mr. chair. >> ms. levine for five minutes. >> chairman murphy, members of the committee, thank you for inviting me here today. i'm not the other end of the age spectrum. i work with family caregivers of older adults who are with

multiple comical illnesses. i think the importance for your deliberations is that the misinterpretations attacked, which which we heard about are far more pervasive of mental dullness. there's about 42 million americans taking care of the chronically fail parents and other relatives. i can't tell you how many times i hear from family caregivers to have a parent in a hospital and the family members expect they do on it are machines and on the care court nation in the community and when you ask about what do i need to know to do this. i can't tell you if because

those hippa. the two features are dimension. there is this training that emphasizes the scary aspects of hippa. it is often done in a way that if you see anything coming up in big trouble. if the training doesn't say that, then the informal communication among health care providers, particularly the mid-level so, nurses, social workers, others, terrified they'll get sued, lose their job. meanwhile, laptops lay all over the place. they're not paying attention to the actual security of the information. the second reason and this is very pervasive is hippa has become a convenient excuse to avoid difficult conversations with families. it takes time, sometimes

uncomfortable. it is really nothing to do with privacy of the patient's information. it has to do with why do i have to talk to the slaughter? why can i just tell the patient? fine, if the patient is totally able to understand. an 85-year-old woman with congestive heart failure, moderate dementia, 55 other medications and so forth cannot absorb the information. i think what we need is farmer education on a level. it's instructive that our next step and care website guide for family care to the most downloaded guide is the one to hippa. people are confused and looking for information. the covered entities wherever

they are need to be encouraged to provide information and never made tos you can barely understand, mr. rothstein and ms. tran time -- it's not about protect any interest at all. i think my ultimate question is whose interests are being protected? is that the patient's interest? is that the staff member's entry is and not getting into trouble? is that the institutions that nurture is in not making -- those are valid, that they should never override the good clinical care in the importance of good communication that older

people, younger people, everyone needs the best clinical care, says a pervasive problem that goes beyond what they are specifically asking about, that it's a kind of waterfall. once it starts, he keeps going and they continue to hope for more clarification. thank you geared >> thank you. mr. wolfe for five minutes. >> of mourning, chairman murphy and members of the oversight committee. my name is gregg wolfe, ceo of litigation support a federal official reporter for pennsylvania. and thankful for the invitation extended for the dire need to change the hippa lot and legally emancipated adults that have a mental disorder, disability or alcohol addiction. the hippa they'll have a positive impact on our society.

misunderstood was gregarious, caring, compassionate man whose life can be sent men on december 19, 2012 or the heroin overdose at the young age of 21. justin had a tendency or curious university thank you to 3.0 gpa. justin had been seen their pay since he was 15 and have to to anxiety, ocd and adhd. this place are not early 17 your soul. unlike physical illness, mental almost has a long maturation duration to one discovers affects the results with which to treat and possibly care. in 2012, he told his mother he was addicted to percocet anoxic hot. she took him to her primary care physician without my knowledge. when his mother was not president of income he stated he could use in for a few months prior to that date. just enough to not be apprised of substances and did want his mother informed of his heroin

usage. he told her to take immediate or recommend a crisis center for treatment. justin convinces an editor is manipulative behavior to take them to a doctor he knew of, which he did. just would not allow and his mother in. just admitted to using heroin and was prescribed the box and. two nights later against his wishes, i was only informed of his percocet addiction and implored them to enter into rehabilitation treatment. justin was working two jobs as little time to attend treatment. he commenced his mother and i was helping him with his recovery. justin is residing in his apartment and have brought out on. we finally gave him an ultimatum to enter treatment for five weeks at number. is that we have contacted the director to inquire about progress. he could not disclose

information under the regulations. i was frustrated as they could not be apprised of mason's condition. during the five-week rehabilitation sent him to see a psychologist weekly which ensued until his ultimate demise this past december. i explained his history for which you try to camp will justin as well as medication for depression, anxiety and ocd. and later learned he had not disclosed his addiction except to say he tried it once. upon justin's passing has depression and ocd medication were found untouched. either you continue to take anxiety medication to return moscow where he joined a fraternity where he was fully supported by the brotherhood. justin obviously with the brilliant do here when in addition to mental disorders that of an accidental overdose a few weeks later. may 2011, no one was aware justifies using. everyone was in shock in this

release so we found out. i've confronted numerous payments of nine out of 10 people are not aware starting heroin is an option which is how justin used the drug. most are shocked to learn sometimes only $5 or $10 i appeared is cheaper to buy heroin on the street and purchased percocet anoxic cotton. pitch out of the places philadelphia to buy drugs. just consult his personal belongings and items from his mother on several occasions and sold a federal medication i learned after the fact prewritten text messages. parents of a mental disorder addiction who maintain legal resident he and their parents homes under the auspices of parents care and under parents health insurance coverage is specified by president obama until the age of 26 access to medical records for prevention

of harm to individuals and society. any disorder commits a threat needs to oneself by society as a whole is indicative of the newtown massacres columbine to name just a few. unintentionally his life cut short to straighter than life including his younger brother, austin has a type one diabetic, not to mention individuals who sold the box and a natural. i suppose a reckless disregard for driving as well as connecting activities. big daddy never heard anyone of the road. cigarette burns and is batting for blotting out which could have said the apartment complex ablaze resulting in injury to themselves or other. justin stepfather had taken assault rifle target shooting for sport. had we known about his addiction he would not affirmed in. i was against not going about his addiction.

am forever thankful for not allowing it now but i know he was using a mind and a drug. >> we're out of time. can you give a final summary and come back with the final summary your statement there. >> i have some very important point that would only take three of four more minutes. >> go ahead. >> just inside the manipulation was the result of heroin addiction. heroin rewires so the other elderly to experience pleasure is doing more of the drug. thereby results in the affirmation behavior. over the last 11 years in 2010, drug overdose killed 30,000 people making drugs that were common cause of death. by comparison approximate 8500 or result of firearms. accidental drug overdose is the second most cause of death exceeding attributable to firearm, or hiv/aids.

even if teens understand they it it -- it's out there from all cortex developed with mental disorders exacerbate irrational behavior. in many circumstances, parents know what's best especially given guidance. in an effort to other parents i've launched an all-out campaign to president obama, lawmaker and leaders of such as yourself to call attention to the issue mib for additional language that may help protect a troubled young adults and communities from harm. parents unable to operate about a drug induced a mentally disabled children do not have the wherewithal to think rationally for themselves. the absence of rationale may result in decisions or premature

death. item number five or protected information can be disclosed without consent including serious threat to or safety are covered entities may disclose health information they believe is necessary to prevent or lessen imminent threat to a person when such disclosure. it should stand to reason language addressing the safety is prudent and necessary. in closing i request a fun language be added to the hippa exception. parents or legal caretakers were emancipated public document drug abuse and mental health continue to cover the minor or emancipated adult health coverage or continue to support these financial they will have access to records until the age of 26 to prevent him, her or society from harm. although justin's family, could not save them, it's my hope for change come the situation can save millions of lives in the

future. addictions recounting that may affect ethnicity and socioeconomic backgrounds. when you look at intelligent people whose lives are taken to mental disturbances and drug abuse, this country has lost about the talent and success, which would've been an asset to did growth of our nation. thank you very much. >> thankou ll for five minutes. >> thank you, mr. chairman. i am a father of a paranoid schizophrenic son diagnosed at age 14 about which means half his life he's had this on us and i'm afraid i have some rather harsh news and points make that are going to fall in line and i think congressman cassidy for his comments because it gets right to the point. my wife and i embarked upon educating ourselves in every aspect of mental health treatment, including navigating the system, familiarizing ourselves with tanks and our way

and we took it upon ourselves to educate others by teaching classes, serving on boards and speaking engagements and they've also done it by bringing people into her home and helping them to cope. what i'm going to tell you is we are ashamed of first oath as to what we did not know before her son became mentally ill. i would daresay if the the members of this committee were to spend a couple days with someone with psychosis, this would fly. you would change things tomorrow. it has to be recognition of the gaping hole. the difference between lack of insight and a psychotic episode. two entirely different things. lack of insight and refuse treatment and you don't want anybody to help you, most importantly family members. what happens is you are setting the stage for tragedy.

literally propaganda because were trying to teach -- trying to need a severely mentally ill the same way we are the mainstream mentally ill population and it doesn't work. it's illogical. my son has always been a u.s. marshal for is god. he said he was a secret agent. he thinks to this day he's certain to iraqi worse. he's been in the snow, let thomas under a bridge. he thinks my wife is a stripper and a and i'm a predator. for an entire year he did not believe we were his parents. you tell me this individual can make decisions about his care. when he gets in the hospital, and that's a big if, to give the new hospital he's been in 14 -- for 14 years he's been in eight hospitals in four counties in one city, dozens of different times.

if you have this broken chain of treatment. imagine the medical system where physicians and providers can't align prior history to treat this person. it's beyond comprehension. the other thing is the staples accountability. when i tell you people hide behind hippa, before tenure educated and in every situation possible that only the grace of god and there's a plan for my wife tonight to make a difference that we figure and our son has been killed himself. he's far more likely to kill himself than he is to live the rest of his life appeared once again in the hospital comic and mutilate or not not done at all. our son escaped from a mental-health facility that that was blocked. hippa was flown out the window. the hospital, police are calling a spirit every privacy violation was enacted for this man up for my son. they found four days later, drug into a state hospital. once he was in there come he

verbally assaulted the judge, was put on suicide watch, was completely out of it and when the time came for his hearing to receive treatment we are precluded from participating because of hippa. the panel looked me in the ein said we can't do it, our hands are tied. two days later a staff member was killed and his wing. we don't even want to know what happened. he was one year in that facility. the abuse, the things that happened in that hospital and they never, ever let a sin. when he was 18 i couldn't do without us. and he became a team we were the enemy, strangers on the street. .or share with us behind the scenes things they knew they were going to get in trouble with peers to separate a loser jobs, but we have to tell you. people took chances. outside of our community we are left out. the other thing is imagine

somebody who's mentallyl being discharged into real society. even under the best plans the families involved it's very difficult process. take a look at someone who's not part of a discharge plan that includes a support network. our son has been released and sent on buses that we have accounted for weeks, wondering if he's dead. hippa empowers homelessness. our son is gone, no money, no close. why didn't you tell us? hippa precludes that. they have to tell us if a thread. they while others do it. the shelters can't tolerate her there. the support isolated in fear,

frustrated, angry and we are his first target. so people are released every day without the discharge plans and they have no way to transition. you don't want somebody that has psychosis as a sin and that pops up. by the way, the idea of anticipating and predicting an imminent danger is coming at just five for four months to get that across. not one person on this planet can predict the tipping point to some of a severe mental illness. you can't do it. what you try to do is rely on the people closest to that person. the family can't do it. as each year goes by with less ability to help. the idea we will provide information does not work. in closing, i would like to say hippa has gaping holes in it.

this is the biggest. if there's ways to beat hippa, we seek to find it, which is bad. our son in other people's son deserve the right to be collaborative and informed so they are safe in their child is safe. thank you. >> thank you, mr. kelley. ms. thomas for five minutes. >> at deutsche bank congressman braley for inviting me to come tell my story and chairman were being represented to get for holding this hearing on the support subject. my name is jim thomas of the story have to tell is a nightmare that could have been prevented. my life has not been missing since the tragedy occurred and it changed the life of my entire family and community. on june 24, 2009 what started out as a spring morning ended up in the beginning of the night air. shortly before 8:00 a.m. a 24-year-old former student, mark becker, walked into her high

school liebermann in front of 22 young high school students emptied his gun at close range into my husbands had. he died on the way to the hospit he was only 58 years old and it taught and coached for 56 years. in one moment so many lives are impacted forever. our family lost a son, has been, father, grandfather and brother whom we all love very much. the students in the wait for that day along with extended community lost a mentor, friend, teacher and coach. they lost their sense of confidence and security in the horror that they will be with them forever. innocent youngsters including around grandson suddenly realize the world has a dark side. they were taught a horrible the truth a day. that things happen to good people for no excitable reason, even when they think they are safe. our grandson survived as a deep love of their grandpa humbleness experiences they could have had

within. my son lost their father who may love very much i lost my life partner and they miss him every day. the real tragedy is the fact that so could've been prevented. only four days before he was murdered the same young man being discarded to the garage of an acquaintance and try to break his way in with a baseball bat. when police arrived come he flatly did not person on a high-speed chase it with police apprehended in, he was taken to a hospital for psychological evaluation. less than 24 hours before my husband died, mark decided he didn't want to stay at the hospital. so not following the advice of his doctor, mark was dismissed. no one knew. law enforcement was not notified even though they requested the hospital let them know when he was dismissed. the hospital's justification for not notifying my first prior to his release was hippa prevented this disclosure. even if parents did not know until they were called later

that evening. noah newmark had been released, but mark's privacy have been protected. during the investigation i was revealed mark had feelings of animosity and present and to a subset of. we did know that. if mark had asked were ed was, i would've sent him directly to an into his grave in what a to think i may have had to live with that. once again, mark's privacy have been protect it. but also severe mental illnesses are not able to make the choices for themselves concerning treatment or actions. they may need help a family member or responsible parties to receive required treatment. they may need outsiders to keep them another set of harms way. due to hippa, marx parents were unable to get information or make decisions for his treatment.

so i would ask you, as the privacy of one individual more sacred than a life? is a more important welfare general public likes isn't more than relying our law enforcement to know what a potential dangerous offender is released back into the very community they risked their lives everyday to protect? ed was an inspiration and as importantly a loving son, father, grandfather and brother. i urge congress to update a lot to prevent further tragedies like this one. thank you. >> thank you, ms. thomas. ms. mcgraw for five minutes. >> i appreciate this opportunity and want to thank the chairman of the committee for focusing on these issues come which are clearly critical. i do have to hope ibc for a not profit public interest and advocacy organization that works on behalf of consumers.

we like to think of privacy as playing an incredibly well and making sure people who are suffering and stigmatizing conditions like mental illness into treatment. many people express one out of six surveys consistently that if they didn't have some guarantee the confidentiality that they would not seek treatment and that's the reason we have privacy laws. they're not in the crate and obstacles necessarily, that create the treatment environment people to stigmatizing conditions want to be in. having said that, they are not absolute. they have lots of exceptions in the previous panel talked about then. it allows for notification of persons in the event of a serious and imminent threat and notification of family members except in cases where there's an

objection objection by a patient who has the right to object. in this case either an adult were emancipated minor or in some states that allow minors to consent treatment on their own and control privacy rights, in that case the minute whole debate. if you're not dealing with someone is capacity to comment they share with family members, close friends or people that the patient is needs. having said that, it is abundantly clear from the testimony today that hippa is mangled in terms of how people interpret it. using it frequently has a shield not to disclose information or because they feared liability, which frankly is not anywhere in hippa. that's incredibly frustrating when i hear the stories and i'm sure frustrating for all of you, too is hippa doesn't say you can't disclose.

so for people to plainness on hippa is incredibly frustrating because hippa does allow disclosure and where the disconnect is happening is incredibly frustrating. i am a privacy advocate, but i believe in the reasons for these exceptions. we take a balanced approach to issues and understand the reason exceptions exist and for whatever reason, to make you can't disclose to family members. they are not bound by potential for a serious and imminent threat. it is the case of an individual objects, if they have competency in power, that would be the case where you couldn't. i would say more often than not, the experience notwithstanding i've had people say to me, my

elderly mother i would like to know that her doctor talked to me about her treatment and i'm not telling it will not allow that to have been. the one true. i am incredibly sympathetic to the frustration of people who are told hippa requires something that it doesn't. i'm trying to figure out what we can do better in terms of educating folks about what it does and doesn't do because it sounds like too many people are hiding behind it in circumstances where there is clear exception that would allow for information to be shared. some of the testimony of director rodriguez in the first panel was a lot more -- i have a greater understanding of the exception or family members stand before the hearing. that suggests to me that skype,

which i think is good is not the letter everyone's been talking about. this is guidance about what can be shared with family members. they want the information shared with one or more family members or close friends and yet it doesn't happen. it could be made more clear. we can find better ways of disseminating items. i know where it is on the website, but probably lots of folks who aren't aware that it exists and particularly when faced with a person in a health care facility telling them, which is probably something they unfortunately believe they will allow that information to be shared when in fact it does. i'm happy to answer any questions and i appreciate the opportunity. >> we think of the panelists. i want to say here in our hearts go out to the families. it's a sad tragedy are still dealing with here.

will recognize first or five minutes. i want to make it clear, is levine come you stated you had opinions in her testimony. you're not a license provider, correct? and you're not a practicing therapist in this field? >> not at all. >> and support of the record because on page 10 of your written testimony can't be said that doctors don't want to share information and is a convenient excuse not to talk to families or listen to what they know about the patient. he went on to say is easier to avoid conversations about prognosis and treatment options. dr. martini, is that true? they don't want to talk to families as is typical? >> know, the vast majority of physicians are interested in sharing that information very much want to involve families care. for psychiatric parent sharon, prognosis improves, one of the

with a ways i look at it they see a patient at the most in our week in the families do with individuals on an ongoing basis. any recommendation i make as a clinician is more likely to be successful if they get the support of the family. >> mr. kelley briefly, in a word or two, also from your standpoint because he talked to providers about these cases, do you think the providers did not want to talk to you or they did that thought they could not because of their interpretation of the law. mr. wolf. >> my family told me he wanted to disclose it goes under the obligation of hippa not to disclose it. >> mr. kelley. >> in 14 years i've never encountered a situation where they did not want to expose it. they would not have them was was secretly tell us. >> i can only speak for what law enforcement told me in my experience in a difficulty

getting >> thank you. >> you heard from a of conflict was adequate and the problem is providers aren't really aware of the law and are unjustifiably worried about lawsuits, perhaps hospital administrators not to disclose information. do you think that history that is adequate about the way the law is worded and information gets out to providers. mr. wolf. >> topic is adequate because both of my sons case but the rehab situation as well as my family care physician, both after just indices told me they would've done something with regard to informing me. i do feel like they did have an obligation and it is a

life-threatening situation and they were obliged to follow the regulation. >> thank you. mr. kelley. in all due respect i think there's a significant detachment from reality. not with you, but mr. rodriguez. it is underlined unless the patient objects and some other severely mentally, they don't want to believe they are ill. that gets thrown out the window. it's plain and simple. >> ms. thomas. >> i speak on behalf of the volunteer emt for our community and the threat of lawsuit prevents this from feeling like were able to tell direct family members conditions of patients with transporter. either it's misunderstanding but that is what synthesized in our training. >> in a written statement 17% or

38 on withhold information from health care providers due to worries about her medical information may be disclosed. nasa do some general health issues, not mental health is that correct? >> that's right. i looked for some more specific statistics on persons being held back from seeking treatment. i didn't have enough time to thirds of people with mental elements do not seek treatment for a number of reasons. lack of knowledge, fear of disclosure. >> i appreciate that. i might also say -- we have folks they doctors didn't disclose information and people are overinterpreting the law in your same patients are overinterpreting. could you give something

important. it's badly mangled. what can be done to clarify the clicks doing legislative language, k. five, clarification from the opposite rights? what do we need here? >> badly mangled part is the reference to the fact we had all this testimony about what is in hippa and people are told in fact it's something that it not. with significant consequences. more guidance and better ways of disseminating it so you don't have to look hard for it on a website. absolutely is the first step we should pursue here. ideally that could be done in conjunction with professional societies who have effective mechanisms. having read this guy and is clear, but it could be made more clear. more examples.

in this circumstance you can ask. >> we look forward to specific recommendations. mr. braley, five minutes. >> i should also know, mr. chairman that ed thomas' sister is also beyond yesterday. this has impacted her as well. jan, that things are tested on brought out of this misperception that the issues are unique to large urban areas with a higher concentration of people who are seeking treatment for severe mental elements. parkersburg is a town of 2000 people. five years ago this may was nearly destroyed by a tornado in your husband, ed, who is the people of the town to rally people to put the community back together. one of the other things that is so is that mark becker is someone you knew very well. >> exactly. he was a member of our community.

we've known him and his parents are entire life in their frustration getting treatment. i agree with what they're saying when it comes to severely mentally ill people, you can't classify him as someone who has cancer or hepatitis because they think it is not rational and there needs to be exceptions to this rule is there. >> one of the other things we know is from the stories that have come out, you and ed at the same church as mark becker's parents. it wasn't like this was a stranger in your family. i know the bakker family has expressed the same frustrations as parents we've heard from the other panelists in trying to get mark the help he needed said he could put his life back together. that's one of the most disturbing things is these are stories we hear over and over again and it points to a breakdown in our ability to get people who need the services

they need in communities all over this country. one of the things i'm interested in is how this particular tragedy in your life has taught people in your community think about the problems have been talking about. >> it's hard to speak for other people, but i think there needs to be more awareness of mental health in this needs to be expanded on quite a day. i don't think there's enough resources out there for people. the fact that no one knew mark was released and the threat was frustrating to people. there were a lot of that was involved. those young kids were 14 of 15 years old that witnessed their coach getting shot down at close range in cold blood and adult could've been prevented. that's a big frustration for a lot of people. he was not able to get out of harms way and this is on the

streets because he wanted to be. >> one of the other things this points to as silent as someone with a severe mental illness 40 years ago and i remember the stigma attached to mental illness then. would like to think we've come a long ways as a society in dealing with dental ulna system than just israel and impacts people's biases other diseases. the reality is they are still stigma attached to it. relate to avoid conversations about that impacts us personally. i want to thank all the panelists for having the courage to share your stories. i know it's been an incredible challenge for all of you. one of the things i talked about earlier is this challenge their family members have with adult children of being able to have a role in making decisions about their care for their sometimes

obstacles. dr. martini come he talked about this a little bit. one of the questions i raised is whether the risk is still a viable way of giving patients the help they need for truly effective treatment. he gave examples of both sides of the story where families intervention was counterproductive, one with the need for intervention was not provided that could've been in the best interest of the patient. so how do we resolve this? >> i think congressman, what i would like to do is think about what she last referred to in the best interest of the patient. what do we think is going to help the patient in their recovery? i understand issues around the release of information and confidentiality of patient are sensitive about that. we're not talking about release of information to the community.

we're talking about particular cases on a more individual basis for deciding if the patient is going to do well, what is necessary? what information needs to be shared? should that be shared with family members? are they enough that i cannot help up individual? to be a good idea to share with the position in their community who quite often coordinates care in a variety of ways. that is also an asset to quite often is not part of the process in some ways because the patients are reluctant to have any local connection. if it's in the interest of the patient. >> thank you. mr. braley, would you submit that for the binder so it's in the record as well? >> i'd be happy to. i now recognize for five minutes, the gentleman from virginia, mr. griffiths.

>> mr. chairman, if i could pass the time, i'd appreciate that. >> mr. johnson for five minutes. >> thank you, mr. chairman. first of all panel members, i would like to reiterate thank you for being with us and for your testimony. i know these are very tough testimonies to give nr go out to you. ms. tran three, you suggest health care workers sometimes use hippa as an excuse not to share information and not fit to live because they're afraid of fines or send letters. why else would someone withhold information from acquiring family members? >> because the role of the family man or and care of someone -- as i said, most of my experiences with older adults,

although i personally with the family caregiver for my date has been 17 years he had tonight brain injury and was quadriplegic. so i have my own experiences with the system. the family members ask our question. they want to know a lot of information about why does this have been? what can i expect? what are you this medication when it's on the list and says this is counter indicated. this is not to disparage the nursing profession because they're fabulous. i've had so many nurses say to me, are you trying to tell me how to do my job? okay gal, i think i am because my husband should not have this medication and that medication together. so there is a kind of -- i have to tell you how many physicians, nurses have said to me, family

members are passed, nuisances. nar. i am not denying it because they asked her questions. the patient in the bad is in pain and sedated will not be any trouble. i think it is a truth universally acknowledged that family members are important on the date of discharge to get them home, but not necessarily the course of a half causation. i really think that the hippa scared that i'm now concerned there's going to be a high-tech scare because i'm already getting e-mails from vendors saying we are going to protect you from this horrible audit that are going to happen. if only you high-risk him you'll be safe. >> every time there's a new regulation, and industry pops up for the services. >> it's not fun game. expecting support each other is my feeling.

>> when they go to some other questions. one has been for ocr to reinforce the provision in hippa that permits disclosure of relevant information to family caregivers or others who will be responsible for providing, managing to pay pain a patient's care. how do you suggest ocr going about doing that quite >> i agree the website is one way, but not the best way. there can be above in the medical professions, involving the people, risk managers are doing a lot of training, involving leaders in saying this is not good patient care. we are concerned about hospitals readmissions. one of the people on true reason people come back to the hospital in 30 days to cost medicare tons of money for family members responsible for that care don't know what to do, so they bring them back.

>> your recommendations for cms as well? >> your recommendations for cms as well? >> yes, cms should occur just prior to participation in medicare and medicaid, to make sure the training they are responsible, accountable for training the hospitals and nursing homes to train their staff in a balanced way. one more thing, which i didn't get a chance to say. >> quickly, i'm running out of time, but go ahead. >> just quickly. when we encounter through our contact with providers, the patients who object to having a family member involved has nothing to do with privacy. it has to do with that i want to worry my daughter. i don't want her to have any responsibilities. >> mr. kelley, who observed a

fear provided one of the facilities. how does this impact decision-making by facilities passed to taking care of your son. >> it's more than one hospital commissary. essentially we are not in a position to prevent horrific things are not a myth that candid discussions with staff and doctors were they acknowledged they used the word her hands are tied to hippa privacy rules. we tried to go further and the size the ability to make good decisions and it doesn't phase them. so what happens if the patient gets mistreated. so our son has come home and been on the wrong medication in horrible condition. so is pervasive. it's not just isolated in one situation. >> thank you, mr. chairman. ideal that. >> ms. degette for five minutes.

>> thank you, mr. chairman. i would like i read all your testimony even though i wasn't herehe y say it. but those of you who have lost loved ones, my deepest condolences. as i said in my opening statement, i know how difficult it is to have a child with a severe illness. much out as a physical illness, not a mental illness and is now a freshman at college, so i know what she's been dealing with and dr. martini in your testimony to the parents paying for college tuition, parents either side of the child and are deeply concerned and if the child is over 18 and are wanting to become independent and they do have privacy issues. it's a har hard balance3 it's a hard balance when you do with the mental illnesses, which has been learned in our previous briefings and this panel for professionals, bipolar disease,

which is that the root of some of the violence, most notably suicides, that evidence with young men between the ages of 18 and with young men between the ages of 18 and 25 and in young women a slightly older age. this is right at the age where they are becoming independent from their families and most of the time are over 18. so it is a hard talent because on the one hand it's like ms. mcgraw was talking about. you want the young people to not feel the state must have a get medical treatment and on the other hemisphere is, we we want to know if they are at risk to themselves or others. so it's a balance. .your martini, sent denny said really struck me in trying to grapple with this issue, you said we need to look at the individual. we need to rely on doctors to

look at the individual cases and to see if this is a situation where having parental involvement or involvement of another responsible would be appropriate to let them know. and i guess i agree with that, but i guess i else though, and listening to the testimony of the last panel, that's exactly what they were saying. what they were stated in their interpretation of hippa, that's a medical providers are allowed to do. so i think what we need to do is providers need to understand with their abilities are under hippa. wouldn't you agree with that quite >> i think that's an important part. educating providers about hippa in a way that makes it seem like more of a collaboration, that

there's information to be gained. the state of tennessee has created a review panel of physicians that can look at cases and override aspects of hippa at that panel decides this particular situation is worthy of that. those kinds of initiatives, where hippa is seen as not simply a government regulation, but as a process, something they can participate in would be better. >> i agree with that. if we still have our hhs witnesses here, i think we should also have our federal agencies work with the colleges because a lot of problems seem to come with colleges trying to balance important privacy protections for their students and also letting parents know. again, they would have some leeway, but we have to work with them to let them know that. >> i think there also needs to be somehow prevent it has

coordinated mental health care for student and thousands of miles away would be a chnd thouf miles away would be a challenge. >> thi3 for student and thousands of miles away would be a challenge. >> this goes to the last thing i want to talk about because it's not just the hippa issues. it is also access to treatment. i was actually at the hideout her and the assistant came in and said she had an 18-year-old son diagnosed with a polar penny had become violent. he actually put himself into a 72 hour hold and then he was released. he actually involved his parents and they were involved with it. they couldn't find any mental health treatment for this kid in denver, colorado. ..

now the family in one of the patient does not want local physician to know about the extent of the psychiatric problems because the physician in the community knows a great many people. i think that good amount as

lace on the part of the patient but i can understand it and i think what we need to do is we need to work with these local commissions and physicians to involve them more in mental health care to educate them to make them part of the mental health care system so that family is recognized the help they provide is going to be in the patient and the family's best interest. >> one of my concerns we heard in a previous hearing is it takes 18 months for the average person with mental health problem to, you know, get to see the mental health profession and that is a concern on something that we need to address, so it seems to me that your primary care physician might be in the position to shorten the time period by making the referrals were saying this is not such a big deal and when it is a trusted family physician a lot of times they can be helpful in that regard.

also in following up in the profession and not the immediate community. the mental health profession may be the next command the over, 40, 50, 60 miles maybe more. then they can communicate with the local health care provider it does create some benefits. from the perspective of the patient for the health care providers it is important. on the part of the patient what it does allow you to this point out services that may think more efficiently. the local practitioners add understand what is available in the community and not simply the standpoint of medical services and the community and schools. they teach them what they can do to get them comfortable with what they can do in their

practices when they should refer to us and allows a part of that we need to be available. we need to make yourselves available and that is such a good question we do need to increase the size of our workforce and do this and much more effective way. >> thank you. i noted in the testimony that the fear of liability for violating the revision is coupled with a misunderstanding and can be a recipe for not sharing and i'm just wondering if you are familiar with -- are you familiar with those that go the other way where permission could have been granted? the police asked to be notified. clearly the police have made a determination he is dangerous to the community. they couldn't tell the police any thing, so i'm wondering if you have heard of any suits and

did you even consider suing them for letting the person back on the street when hipaa would allow it? >> they don't have any provision that would enable anyone to sue on enforcement to either a patient in terms of privacy rights or someone else in terms of over interpretation. keep in mind also that hipaa's allowance for these reasons that we talked about is permissive. it's still on the detriment of health care providers to make a judgment call about what is in the best interest of the patient. having said that, we need to keep in mind that hipaa is the floor and there are state laws that may provide greater protection and have medical privacy statutes that can be used to impose liability in the circumstances but i certainly have never heard of anybody being sued. any information a patient asks for that is about them because you are required to disclose that information. you can be held accountable for

not doing so. >> i guess my concern is, and i was a practicing attorney for a lot of years, but my concern is that is one of the ways people like to hate lawyers and by understand that that's one of the ways you sometimes get the red vacation in these ways not that the money is important. it can't bring anybody back but it may keep somebody from making that mistake again. we had an individual who the police during and he has run his car into the back of a garage. he's clearly even a danger to himself or others. they bring him in and they want psychological evaluation because they are a threat to somebody and the hospital let him walk out even though the police ask for a notification. i can't think of anything else and to the that is the classic tv classic definition of negligence and i'm very sorry. >> it was looking into a lawsuit to get the records and we just

decided that it probably wouldn't be -- it really wasn't going to benefit anybody at that point in time. >> i need respect that decision. islamic thank you. i appreciate it, mr. chairman. >> mr. counselor for five minutes. >> thank you, mr. chairman. first of all, i just want to say i hope and future hearings and other events we will include testimony and participation from the patient community. and i know that there are some -- [applause] i know there is some discussion right now in putting testimony -- >> we are not permitted to have any offers and savings that might also provokes and outbursts. continue on. i know there's some discussion about including written testimony highly foot noted that

would be done with what you give in but the family members who came here with your stories. i know it's got to be very, very hard to do and it's much appreciated. i want to understand the example, a couple of examples that you gave. you have a patient, a former patient with a form of autism, and eventually his parents went to court against his wishes because they said their son could not care for himself and must remain dependent and you come good on fortunately the subsequent ruling in their favor was counter to our goals of psychiatric treatment and the

real his progress. should his son have been able to do what he wanted to do? >> no, what i was saying is that because the sun would not allow his parents to be involved in his affairs nor would he let them be involved in therapy so i couldn't incorporate them into the programming who they were trying to organize and the treatment were trying to organize and in the medications that he was prescribed. he couldn't allow that to be this was the only recourse they had and was counter to the therapy because the purpose of the therapy for me was to meet him more functional.

>> i & a that come about what would -- at the point that you are saying if they had been involved earlier, on the understand that. but to the point of someone making a decision from an adult making a decision, what what they want to do i'm trying to understand what a better outcome might have been and could it have been done without having to go to court and. that is one of the reasons i put it in there because i was searching for another way to have a better outcome without having to go to court to. if there was an example similar to a thing i mentioned in tennessee where there was an opportunity to repeal or to present the case to say this is what is going on in this case i think is in this individuals best interest to have the parents involved to have them

actively participate because it is more likely that this individual was going to be successful. the treatment is going to be successful, and his life i think is going to be less traumatized if you have an opportunity to do that and there is the means to modify what is happening in the hipaa regulations in these particular cases providing that it would be an advantage not just for the family but also for the patient. >> you asked the question that there is a body is in the situations should it be towards parental involvement rather than away from that? what do you conclude? cade if there is a bias should be towards parental involvement rather than away from that, as a psychiatrist my bias is to involve families. we involve families as often as possible and treatments coming and i think that a variety of reasons i think that if there is going to be a bias in that

situation it would be toward family involvement particularly if there are no specific reasons within the family with no indications that in the family, nothing that can adversely affect the patient. an adult with autism there may be some better ways for that individual. with the support and help etc. rather than as you use the word dependent at home. do you see that as a part of the negotiation that might involve everyone? >> absolutely. i think in this particular case the goal for the patient was greater independence. with the hope was in treatment

was to be able to manage his affairs and the level of anxiety he felt in the situations with a down, that he would increase the capabilities that he had to manage his medications. but the defense was having his parents involved i think what have expedited the process. >> thank you. >> five minutes. >> thank you mr. chairman. i would also like to say to the panel thank you so much. and i'm going to get emotional regarding sharing your stories because this is the only way that we are going to change anything in mental health. and i know how difficult it is for you to come forward that i can just say how much we appreciate your input so that we can make the right decisions moving forward. with that, i would like to start, ms. mcgraw, thank you for your comments to my colleague.

i associate myself with your statement because it is easier to just give a blank you don't know what you are talking about. you are the family member. anyone who knows better. that is one of the downfalls of nursing is sometimes we share our opinions a little too openly. but i am concerned about the misconception of lawsuits because as we know there are so many frivolous malpractice lawsuits out there and that this is one of those grey areas where health care professionals do not feel that they are protected and certainly the violations can be way out against them as a malpractice that that is not necessarily an avenue that would

be taken am i correct in your testimony? >> certainly there is nothing in hipaa that would allow someone to be sued. again to the extent that you have seen any lawsuits in the space around privacy violations, they are filed under state law provisions. and you know, i don't do malpractice work, but again if you are being -- if you are facing a malpractice lawsuit that is a state law action. >> thank you. >> i would like to ask you a few questions with your situation especially and as sensitive as it is. and again, thank you for being brave and sharing that with us. iowa read over your testimony to find that you were in a situation where you knew what was happening to your son. you knew that there was a drug

addiction, and because of that behavior on his part, the manipulation that they do so well what i've learned from my son and others since this has happened is to give you one quick example, i wanted him to go to in inpatient treatment program immediately and he said i don't want to go into inpatient treatment because i don't want to use heroin or crack cocaine. and as a parent i had to make the decision what to do. i did my research and i did hear that people smuggle in heroin and crack cocaine and there are a lot of other users than

purchase that usage which he had indicated he was doing to he family, not letting us know that he was doing heroin. so there for the allies and the manipulation unfortunately we sent him to an outpatient which he said he would agree to go to. and when i tried to confront the outpatient counselor for the first couple of weeks i was denied any access to any records to be told why he was there. ischemic that unfortunately is the story that we continue to hear, and i do agree with you. i do think that there are some changes that need to be made. for clarification i think anything so how the health care professionals, family members and patient can all understand a little bit better what can be shared and what cannot. dr. martini i have just about 30 seconds left but i do want to say i was of the partnership for children in cumberland county north carolina and i represent

in the second district of north carolina we hailing the discussion about mental illness especially in relation to children. i have a very different tucson is autistic and now is starting to show signs of depression and mental illness. they are having an incredibly difficult time trying to find the correct position for him because of his of his autism that had been diagnosed. can you say a few words about that? >> i think that the availability of services is a critical issue. we need to expand our work force not just one psychiatrist but with all child mental health care professionals. i think that as i elude it to before, we need to work with community physicians. we need to work with schools. there are ways to provide services for july locally that can be efficient and effective beyond simply going to the center. >> thank you so much.

i appreciate the chairman giving me a few more seconds. thank you. >> mr. sebelius is next by understand he's going to allow the doctor to go first. you are recognized for five minutes. >> thank you come and mr. scalise. thank you for the note of reality. clearly we are concerned about privacy, and you can respect that there is a certain ambivalence that we must have that is exhibited by this. so thank you. the way that you said that the hipaa law should be written and something that a patient understands how i put an exclamation because it is written to avoid liability, not to inform people of what their rights are. now, thank you. dr. martini, -- with a great name for a psychiatrist. >> i like it. >> i asked mr. rodriguez a question, and you put here if you had a patient that still

used for bipolar and if the level of declining the patient is still compensated would you feel the current law would allow you to speak for the parent of someone that is emancipated by age or by the wall that listens if this level as any lower they will have a psychotic break. this is not in immediate danger, but mr. rodriquez seemed to indicate there would be permissible would you accept that in your practice that is what most psychiatrists or whomever are doing? >> if the patient stated that he did not want that information shared, i think most psychiatrists would agree if the patient is not imminent danger to themselves or others i think most psychiatrists would believe they shouldn't share that information. speed of the heavy history of being noncomplying and with lithium and having bipolar episodes and creating some of these terrible heart rending stories that are occurring, would that change the calculus

or distill we know we cannot do it? >> i think that when i talk to colleagues of mine about that situation, if they are dealing withnt dangerous and are noncomplying and with the medications, they inform families and significant others and take the risk they may be in violation because they believe it's in the best interest of the patient. >> it's interesting because you say they take the risk and yet that is a perception and some of what we have heard is that that shouldn't be a risk. it should be don't worry, it's not a risk. that tells me that there is an ambiguity even among people that are full-time professionals. would you accept that? >> i.t. if it's true. the problem is that idea of waiting until evan in danger. a patient can be noncomplying and on medication and for a period of time look pretty stable. and you know that eventually -- >> not to be rude, but there is going to be a pattern of episodes. and so, no committees of the

lithium, i see the level going down. it's going to happen again. he doesn't pull a gun and he doesn't do anything terrible but he does live under a bridge and leave his family and sell all of his possessions and run down the street, what ever. and in that would there be any ambiguity among your colleagues whether they are at risk? >> i think that if when they are seeing the patient if he appears stable but they know they are noncomplying and with the medications understand the mood disorders are sometimes at the thought, i think that there would be some concern if they told the family, but the understand that in many situations the need to do that because the patient has a history psp mix there is a perception they are running the risk. >> there is a perception they are running the risk. >> mr. kelly used the term and not quite sure how to pronounce that we are all familiar with it. we have a teenager to be on the oversight his is far more dramatic. a year of no in sight. now this gentleman and his son said that his parents could not

know the history and they have no insight. you are not quite sure how to address that. by the way, i was also struck as smart as you are and you are an expert in privacy when you learned something from mr. rodriguez' testimony to the bayh will tell you and your physician seeing 20 patient sunlight that isn't in your specialty, not hearing the testimony there is no way that physician can actually be as fast file with this information that we are demanding. what suggestions would you have as regard to mr. kelly? >> one of the things we've had a lot of conversations about and when i said i learned something from the director rodriguez this morning is how the concept of an capacity please indicate ability to share information with family members, which is not contingent on a series or imminent risks. but the circumstances under which mental health professionals can make a judgment about talking to a family member when they believe

it is in the best interest of the patient, which is in circumstances when the patient is not around to object or an incapacity. and coming you know, sort of looking for the guidance that is right in front of me about the ability to talk to family members, the issue of this incapacity which is in fact in the regulatory language and isn't in much detail. so it does leave a lot of uncertainty on the part of providers about how to, you know, how do they comply and what does that mean and it certainly would be helpful to have the guidance explore that information more detailed in my opinion. >> thank you mr. scalise. you are now recognized for five minutes. >> thank you mr. chairman for having the hearing. and especially i want to frank the family members have been impacted by mental illness for coming here and sharing your stories with us. we had a really helpful forum back on march 5th where we had

some other family members including pat mullen who is from my district whose son matthew took his life but was being treated for mental illness. they actually thought they were making progress. ave were trying to get information from the doctor from the treatment centers, and they were not able to get that information, and hipaa was being thrown up as the reason that they couldn't get access. it turned out after the fact that unfortunately after he took his life that in his final he had actually authorized his parents to have access to information and so it was just an incredibly frustrating and anchoring for us during this at the forum that we had, but especially to them as parents who were trying to get the right kind of help for their kids and for their son and just couldn't get that access. and so when we hear these stories coming and i know you talked about it, but people

hiding when it turns out that they really may not be the impediment how we get some clarity in hipaa to remove this gray area if it is in fact even gray stopping vital information being shared with family members coming you know, even in cases where these patients want their parents to have that access and yet is being denied. if anybody from dr. martini and maybe go across. if we can try to figure out what is this disconnect that is stopping this information from being shared when the law by many people as an interpretation doesn't preclude that information from being shared. >> i think the thing that is missing in this situation is a discussion of the critical presentation of looking at these cases on a much more individual basis and providing what is in all some flexibility for whether it is an appeal or whether it is involvement by the coalition's

so that there is an opportunity for psychiatrists and psychologists to present the case to an objective body to make a request for modifications in hipaa in those particular situations. again, thinking about what is in the patient's best interest and to have that objective body rule on that process. somehow making it feel as though this is not simply the government telling people what to do, but it is the government giving people an opportunity to protect their rights, but also to ensure that patients get the best care possible. >> i think we need to start with medical education, nursing education and all other kinds of education to have objective people presenting the rules of

what is permissible and so forth, not the risk managers. i'm sorry if anybody here is a risk manager, but i think that this perception of the legal liability, yes anybody can sue anybody for anything, but the real risk is in the security of the electronic data and that seems to have been ignored in all of this scare. "the washington post" -- >> i apologize i only have a minute left. >> we need to do the education in an objective way, balanced way and think about the patient's best interest and it would the family. >> i just want to say that i feel the parent's -- it's very important for parents to be apprised of what is happening with their children, even when they are legally emancipated. and i think that is important to be put in because of the obamacare, things we do take care of until the age of 26

under our insurance, i wouldn't have watched justin if i was made aware of what he was going in for, so i think the parents have to be made aware we are the best caregivers with regard, and there has to be an exception with regards to that. >> thanks, mr. kelley? >> i would like to ask the committee start expanding the definition of a family member beyond a parent because there are other members of the families in this role. quite frankly change is hard and i want to thank ms. mcgraw from the bottom of my heart because it has taken so long to hear what she just said. we need to change things and sometimes you can't get change unless you change things. there has to be a car for the mentally ill or unless the patient objects. >> i would kind of agree with what he said. we need to be made more aware of what it actually does.

for the special clauses for the mentally ill. >> thanks ms. mcgraw. >> what our guidance, understandable so that people can easily find it may be on a hot line for questions. >> i yield back the balance of my time. >> the time is expired. at this point, i just want to -- the understand that the ranking member has unanimous consent request. i do want to say this. this committee has a practice of only accepting sworn testimony. we are going to be asked to accept a letter signed by a number of organizations with states and in its first paragraph thereof so many statements for the record in advance of the hearing. i want to say that we only became aware of this at 715 this morning and we haven't had time to fully review this statement. in this case it is not a letter, but as i said before it is a statement for the record which doesn't follow the tradition of the committee first one

testimony. moreover this is a point of personal privilege for the chairman. one of the groups that sigd this letter for the record has repeatedly circulated false statements about the chairman and the ranking member. and they have repeatedly and purposely misrepresented the serious and part-time work we're doing on behalf of patients, families, health care providers and the public. they have repeatedly and deliberately misrepresented the false statements, thus in this case submitting a statement for the record without a sworn testimony is of concern to the chair and i revealed to the ranking member. >> i would ask unanimous consent to place a record on april 25th, 2013 about the position of these organizations regarding hipaa and assigned by the american civil liberties issues and the autistic advocacy network. i would ask unanimous consent to put this in the record of the opinion of the organization's.

as we have discussed before, i've been on this committee now for 16 years, mr. chairman. and it's always been the practice of the committee to take testimony under oath. and you are absolutely correct that this letter obviously is not under oath. it is also been the practice of the committee to get extensive information from folks that might have expertise or opinions or otherwise can get and i have seen this happen numerous times from both sides of the of simply accepting a document and the record does not necessarily apply in agreement with the positions stated in the document by either the chair, the ranking member or any other member. but rather, it helps to give a more full picture of what people think. but i agree with you. i do not consider this april 25th letter to be testimony or to substitute for testimony. i believe that it is a statement of that group coming and we have done at giving it i got many examples here i could give. but in the interest of time i

will simply ask for the chair's comment in putting this in and look forward to working with you so we can clarify documents the lle put in in the future. i would also note we did put an article from sports illustrated in the record it seems it would be appropriate to disconnect for the record understanding some of the unique circumstances in this case we will for the unanimous consent accept this into the record at this time and the majority will also put a statement in along with it. i do want to thank the panelists today. this, and our continued series to deal with this incredibly important issue for the american people. not since john f. kennedy was president i think that we had such a focus on the issues of mental health and mental illness in this country to get your statement today, the passionate statements from the family members, and our sympathy and prayers go with you. the expertise, dr. martini,

ms. levine and others on the first panel, stay in contact. i have a great deal of respect and look forward to moving forward with you i also -- 930 prada of the committee members on both sides of the aisle. i think the members here have shown an absolute dedication to working this. the statement we had earlier today is 38,000 suicides. 700,000 emergency room admissions for people that attended harm of themselves and all of this is involved -- the communities involved more than any of the subcommittee in congress and in our memory. i deeply think the ranking member for compassion on this and also mr. braley for his and ms. thomas today. thank you very much. in conclusion i remind members the of ten business days to submit questions for the record and ask the witness is to respond to questions forwarded to them. with that, the committee is

adjourned.

president obama spoke to supporters of planned parenthood today there annual conference. he's the first sitting president to address the organization. this is about 20 minutes. [applause] >> hello, everybody. what a way to start the morning. so, you know the yesterday the president and mrs. obama traveled to texas to be with the family is who lost loved ones in a deadly explosion. he was where he needed to become a bringing comfort to a community that has felt unspeakable loss. and so we are especially grateful that he flew back here to join us this morning to but i want to thank you for taking us back when we were fighting our

way back from the worst recession in a generation. and it looked like things were actually going to get even worse. congress couldn't agree on a budget and the u.s. government was facing the possibility that we were going to shut down. and with just 24 hours to go, speaker john boehner made an emergency trip to the oval office. i had to tell the president what he needed to get this budget through congress. and what was his demand? it was to defund planned parenthood and cut millions of people off of lifesaving prevent health care. without missing a beat come in the oval office president, responded know, zero. the speaker tried again and the president told him john, it's not going to happen to the and that's what it means to have a president that stands for women. [applause] this is a presidency of historic

firsts. there are many, but this morning we get a first of our own which is to have a sitting president address planned parenthood in person. so that is with a shout. [cheering] of course, president obama has been with us and with women ever since day one. the first week in office ending of the global gag rule and fighting the lee ledbetter -- [applause] exactly. signing the very first piece of legislation. and of course, passing the affordable care act, one of the most important accomplishments of his presidency. not only for all americans, but especially for women. and as we've talked about this week, for the first time in history, insurance companies will no longer be able to charge women more than men. womens' preventive care including cancer screenings and well women's visit will be

covered with no co-payment. and for the very first time, women will no longer be able to be denied insurance coverage because they are a survivor of sexual assault or breast cancer. as we like to say it planned parenthood -- here's the punch line i know, because of president obama, being a woman is no longer a pre-existing condition in america. [cheering] it's an agreed four years but there is no proper moment for me than a year ago when the president called to say that he was about to announce the white house that for the first time women in this country, no matter where they work well have their birth control fully covered by insurance with no co-payments. that is equity, that is justice, that's what it means to have a president that cares about women

[applause] but he has had some fabulous folks by his side. so i want to acknowledge the women that are here tonight or today that have worked along with planned parenthood and everyone else to make extraordinary advances for women. valerie jared and please join me thinking and recognizing them for their extraordinary work. we know the president believes in strong women. he married michelle obama right? but the wonderful thing is together the president and the first lady are raising these extraordinary daughters and standing up for them and all our daughters to make sure that they have every opportunity in the world. as we all know, the last election planned parenthood's ability to provide care is literally part of the national

debate in public discourse unlike anything we've ever seen before and some of you may remember -- i will never forget during the second debate president obama mentioned planned parenthood for times and talked about are lifesaving work. but the interesting thing is that evening his message went beyond talking to dependence and the folks that were falling the back-and-forth of the political campaign. it actually reached millions of ordinary americans because just a few days later there was a woman that showed up at a planned parenthood health center in houston texas. i'm glad all of you are here today. [applause] so this is the story. had been years since she had an exam and she found a lump in her breast she didn't know where to go. the physician said who referred you? she said i heard president obama

say on tv that i could get an exam and planned parenthood. [applause] we are so proud to partner with the president to change the lives of millions of women in this country. we are proud to stand with him, and today we are so proud to be standing with us. please join me in welcoming the president of the united states, barack obama. ♪ thank you. [applause] thank you very much. thank you, everybody.

thank you. [cheering] thank you. all right, everybody have a seat. you're making me blush. [laughter] >> [inaudible] >> i love you back. thank you. thank you for the warm introduction and for the outstanding leadership that you have shown over the years. you do a great job. i want to thank all of you for the remarkable work that you are doing day in and day out in providing quality health care to women all across america. you are somebody that women, young women and in between can count on for so many important services. and we are truly grateful. i'm sorry that i couldn't be at the party yesterday.

i understand it was a little while. [laughter] that's what i heard. but as all of you know, obviously we have gone through a pretty tough week and a half. and i was down in texas, letting the people of west texas know that we all love them and care about them in their time of grieving. [applause] but obviously this is a special national conference because it's been nearly 100 years since the first health clinic what later would become planned parenthood that opened its doors to women in brooklyn. for nearly a century now, one core principle has guided everything all of you do: women should be allowed to make their own decisions about their own health. it's a simple principle. [applause]

so, what i see in this audience extraordinary nurses and doctors and advocates and staff who work tirelessly to keep the doors at health centers all across the country going, benign reminded of those very early efforts and all the strides that we have made in subsequent decades. and i also think about the millions of mothers and daughters and wives and sisters and friends and neighbors who walk through those doors every year. somewhere there is a woman that just received a new lease on life because of the screening that you provided that helps catch cancer in time. somewhere there is a woman who is breathing easier today because of the support counseling that she got at her local planned parenthood health clinic. somewhere there is a young woman starting a career who, because of you, is able to decide for

herself when she wants to start a family. [applause] [cheering] one and five women in this country has turned to planned parenthood for health care. one and five. and for many, planned parenthood is their primary source of health care. not just for contraceptive care, but for life-saving prevent care so when politicians try to turn planned parenthood and a punching bag, they aren't just talking about you. they are talking about the millions of women who you serve. and when they talk about cutting off your funding, let's be clear, they are talking about telling many of those women you are on your own. they are talking about shutting those women out in a time they may need it the most. shutting off communities that

need more health care options for women, not less. [applause] the fact is after decades of progress there are still those that want to turn back the clock. to policies more suited to the 1950's than the 21st century. and they've been involved in an orchestrated an historic effort to roll back basic rights when it comes to women's health. 42 states have introduced the law the would ban or severely limit access to a woman's right to choose. walls the would make it harder for women to get the contraceptive care that the need. laws the would cut off screenings and and programs that help prevent teen pregnancy. and north dakota they passed a law that out lines -- out walz your right to choose starting as early as six weeks even if a woman is raped.

a woman may not even know that she's pregnant at six weeks. in mississippi, an initiative was put forward that could not only out all the right to choose, but it could have had all sorts of other far reaching consequences like cutting off fertility treatment, making certain forms of contraception a crime. that is of serve. it's wrong. it is an assault on women's right and that is why when the people of mississippi were given the chance to vote on the initiative, they turned it down. and mississippi is a conservative state. [applause] mississippi is a conservative state, but they want to make clear there is nothing conservative about the government in testing itself into the decisions best made between a woman and her doctor,

and folks are trying to do this all across the country. when you read about some of these laws coming on to check the calendar. you want to make sure that you are still living in 2013. [laughter] 40 years after the supreme court affirmed a woman's constitutional right to privacy, including the right to choose, we shouldn't have to remind people that when it comes to a woman's health, no politician should get to decide what's best for you what kind of care you get. the only person who should get to make decisions about your health is you. that's why we fought so hard to make health care reform a reality. [applause] that principle is at the heart of the affordable care act. because of the aca, most insurance plans are covering the

cost of contraceptive care so that a working mom doesn't have to put off the care she needs so that she can pay her bills on time. because the affordable care act, 47 million women have no access to preventive care like mammograms and cancer screenings with no copayments, no deductible, no out-of-pocket costs. so they don't have to put that off just because money is tight. because the affordable care act, young people under the age of 26 can now stay on their parents' health care plan. and insurance companies soon will no longer be able to deny you coverage based on pre-existing conditions like breast cancer or charge you more just because you are a woman. those days are ending. [cheering] now i know how hard you have worked to help us pass health

care reform. you and your supporters got out there and organized, mobilized, need your voice is heard. you made all the difference. but here's the thing: if americans don't know how to access the new benefits and protections that they are going to recede as we implement the law, then health care reform won't make much difference in their lives. so i'm here to also ask for your help because we need to get the word out. we need you to tell your patients coming your friends come in your neighbors, family members what the health care means for them. make sure they know that if they don't have health insurance, they will be able to sign up for quality affordable health insurance starting this fall in an online marketplace where private insurers will compete for their business. it sure they know there are plans that will cover the cost of prevention free of charge.

we have to spread the word. particularly among women. particularly among young women. who are the ones who are most likely to benefit from these laws. we need all the women who come through corridors telling their children, their husbands and the folks in their neighborhoods about their health care options. we need all college students to come through your doors to call up their friends and post on facebook, talking about the protections and the benefits that are kicking in. and dewaal and a unique position to deliver the message. because the woman you serve they know you and trust you. the reason for that is you have and let them down before. i know it's not always easy. and cecile describes. but as the only organization that she has been where there are opponents that in her word

literally get up every day trying to keep us from doing our work. if she worked in the administration -- [laughter] she would be more familiar with this phenomenon. [applause] [laughter] but when it comes to your patience, you never let them down. no matter what. and that's because you never forget who this is all about. this is about a woman from chicago named courtney who has a disease that can leave when an infertile. so in college she turned to planned parenthood for access to affordable contraceptive care to keep her healthy. you didn't just tell her plan for a family, you made sure she could start one. today she has two beautiful kids. that's what planned parenthood

is about. [applause] it's about a woman in washington state who for years could only afford health care at her local planned parenthood clinic. and heating her advice, she never missed her annual exam. during one of them come in your doctor's help catch an aggressive form of cancer early enough to save her life. today she has been cancer free for 25 years. [applause] so in every day in every state come every center planned parenthood operates there are stories like those committed lives saved, women that you have been powered, families you have strengthened. that's why no matter how great the challenge, no fears the opposition, there is one thing in the past few years that have shown planned parenthood isn't going anywhere. it's not going anywhere today, it's not going anywhere tomorrow -- [applause]

as long as we have a fight to make sure women have access to quality affordable health care, and as long as we've got to fight to protect a woman's right to make her own choices about her own health, i want you to know you've also got a president is going to be right there with you fighting every step of the way. thank you, planned parenthood. god bless you. god bless america. thank you. [applause] [cheering]

what do we do about it? the president did say it was a red line. but my big thing is the we would be cautious about how we respond. i do not want to commit u.s. troops to u.s. forces and syria. i do not think i would be wise use of our resources. i also think that being able to secure the chemical weapons that are in syria are extraordinarily difficult if possible at all. so we are going to have to have very serious conversations with partners in the region. i asked partners how we proceed because what has not been said by the administration at any point beyond the red line is what that means. what will they do? what is the best response? and personally, i urge caution. you do not need another war. >> watch more about syria, the boston marathon bombings and other defense issues on sunday at 10 a.m. and 6 p.m. eastern on

c-span. next m i risch president michael higgins addresses challenges facing the european union including unemployment and its standing in the world. ireland currently holds the six month rotating union. this is about a half hour the president of ireland. [applause] [speaking in native tongue] >> translator: ladies and gentlemen, i would invite you to please take your seats.

[speaking in native tongue] >> translator: ladies and gentlemen, it is a great honor for me to welcome the president of the republic of ireland, mr. higgins, welcome to the european parliament. [applause] >> [speaking in native tongue] >> translator: esteemed colleagues, mr. higgins will be addressing as today, but before i get him on the floor, it is a particular pleasure for me to welcome on the public tribune. a warm welcome to them. [applause] >> i am equally delighted that

next to them, on the public gallery seat we have mr. higgins' spouse. a welcome to you, too come in the european parliament. >> [speaking in native tongue] >> translator: ladies and gentlemen, i would like to give the floor to the president of the republic of ireland, mr. higgins. >> [speaking in native tongue] >> translator: president, members of the european parliament, commissioner. i am delighted, and i would like

to thank you all for the opportunity to speak to this assembly today. where representatives of the citizens elect a democratically and derek lee from the 27th soon to be 28 member states are present. >> commissioner mai thank you for giving me the opportunity of addressing this assembly which brings together the democratically elected representatives of the citizens of the 27 member states soon to be 28 of the european union. i address you as president of ireland, that has always been connected to matters european. a country that has always looked upward to people with a very strong connection with the cultures of learning in europe. and a nation that has value to

the european vacation through every century into thepresent, en ireland holds for the seventh time the rotation presidency of the council administered in our 40th year of the membership of the union. be it in our ancient cultic connections and our continuous connection with european scholarships, or in our constant support for the european unity, we are european in our consciousness and commitment. europe has always had an existence in the irish mind. in our own language the stories of europe have always been present. and some recall that made of the classical sources of the schools that preceded the widespread english-language. the irish language that