i have to ask in looking and seeing for the first time many things that i didn't seem to have been aware of before where have i been work family and dealing with the personal issues in life we all have to experience why didn't i see at age eighty two my mother had a stroke during a surgery and came to live with me she always having been a thinker driver an organizer of information and philosophy a dancer a lover of music she was someone worth knowing and remembering she did not deserve what happened to her in her final months of life and her family did not deserve to bear such anger hello my name is brenda asked to reno and i'm here to speak to the needs of the most vulnerable elderly especially those most vulnerable elderly in nursing homes and hospitals i'm here to wonder if there is not a major issue to be incorporated into our health care reform i think this should be considered it definitely involves transparency and oversight the united states of america is thirty six in the world ranking regarding health care according to members of our own congress that means that the five countries do better than we do with providing and promoting a healthy system and access to healthy systems of medical and preventive care for their citizens it also seems to come down to what what are our values do we owe anything to those folks who spent their lives helping our country to become stronger and because they got old now having nothing to protect their well being and fin some of my relatives think that they can prevent bad nursing home care by having more money to buy better care i don't personally think so i think that we can spend fifty thousand a dollar fifty thousand dollars a year on bag care or we can spend a hundred thousand dollars a year on bag care i believe it is the system and purse perhaps also our lack of value in the process of growing old maybe we have a fear of dying and don't want to look at how things really are maybe we haven't looked at what has been happening in our family values for too long of a time it seems to me our churches have also been ignoring the civil and personal events that have been encroaching on our issues of family and the continuity of life and our lineage of family and the empowerment it gives it takes power from us to demean and deny the needs of our elderly and cast them off i hope you all will discuss these things and the term determine what you can do about it at least in your own families i thought i could keep my mother in my home that was not possible after six plus years due to her detour your aging condition and my deteriorating health from the stress of trying to care for her twenty four hours a day there are whole other issues here for another time but let me address some specific things some states have more support to keep their elderly in the family home many states do not you cannot assume that because your state offers extra assistance to keep people in their homes longer or to keep people with their families through the dying process that it occurs in all states it doesn't if your parent is two states away they may not have the same advantages of those who are living in the same state you're in and this applies to when they go into care centers also there are gross differences between states because i now live in washington i cannot get copies of my mother's medical records from when we both lived in ohio i was her power of attorney and still cannot get the records no attorney will help me because there is no in income in it for them if it goes to court according to one attorney in ohio the elderly have no economic value and therefore there is no advantage to take any of this to court am here to speak for those who because of their aging in addition have lost their voices in this country and seem to have also lost some or all of their civil rights i am here because we are a community of humanity or we should be instead places that care for people seem to be corporate communities with corporate values in instead of the values of the human community the issues i address will be from those from experience as a family member in medical situations in nursing homes and hospitals i was the power of attorney and the issues and concerns i address will be from that perspective plus my opinion of this and the shared experiences of others i will try to let you know experience from opinion now let's speak to some basics nursing homes are not run by doctors they are run by corporations before nine hundred sixty five they were of own and run by mom and pop operations usually many of them were owned or supervised by community governments or councils in one nine hundred sixty five the federal government decided just supply medicaid and medicare funding with certain criteria for keeping or using these funds that is when the for profit corporations started setting up nursing homes the corporate nursing home industrial was born as medicare and medicaid and began providing the funding for places that took in the poor the elderly and those who were too ill to live on their own they were then licensed unregulated which gradually pushed out those who couldn't compete or couldn't get licensed fast enough so in one thousand and eighty seven congress passed a law that required nursing homes to be licensed meet basic standards of care and be inspected the nursing home staff as well as the doctor and the maintenance people are employees of the corporation doctors are invited to participate or they are  disinvited contracts are not renewed corporations and companies who work for profit for sed and when you need a nursing home for yourself or a loved one you need one usually immediately it is a crisis situation and nursing homes are not like hotels or spas if you don't like one you can't automatically move out of it and into another so sometimes you have to use the one you wouldn't choose and hope to move to one better later on this isn't so bad if you can if you have a voice and your heard about sure needs and your concerns many agencies and people who spend time in nursing homes feel that many are still not in compliance with basic standards according to medicaid statistics close to thirty percent of nursing homes nationwide are either out of or barely in temporarily in compliance there are good nursing homes good staff and well into tensioned nursing home owners so what's the problem with up to thirty percent being out of compliance that in the one time is that the system is that the funding is that the lack of public attention and public connection to their elders let's explore this a little bit there are good things happening in hospitals and nursing homes there are people who are trying to make positive changes dennis quaid is a well  star name recently he and his wife had a near tragedy when their newborn twins were given one thousand times the amount of heparin they were supposed to have been given that means they were bleeding out of every orifice of their bodies and were near death babies die from this mistake it is not unheard of nor and common thing to happen dennis quaid perhaps because of his movie star status gained attention to this problem and giving what happens when people are given wrong and lethal medications as well as the amount of times this happens to newborn babies some statistics say that up to one hundred ninety eight thousand people die each year from mis medications in the united states of america this is considered a low number cedar sinai hospital in california is now using bar codes to deal with medications this has reduced mistakes to zero i hope it is being applied to nursing homes as well but i doubt it because it costs a lot of money to to do this this brings up documentation and the importance of proper documentation in nursing homes this is also an area that shows the importance of family or friend of the resident involvement first let's deal with the importance of diagnosis documentation from the point of view of what the diagnosis means what does it mean if a person is labelled with dementia is that vascular dementia what stage is it is that all timers well dimensioned also timers it's not always the same thing and it usually isn't and certainly vascular dementia is not exactly the same path as all timers however they are all cognitively d t r your reading conditions my concern is that there seems to be no national definition of even the stages of dementia so how can different nursing homes our hospitals and nursing homes communicate on exactly well where the person is in their progress of the disease and how can the staff communicate with the family on the status of the cum dishan of the person as they go through the staging of the disease dementia all or all simers how can a this be informed as to how to act and respond to people with dementia if no one knows exactly where the person is in the process communication is definitely a problem in nursing homes it is a problem not just with dementia or the definition of dementia but generally between staff and residents and between staff and their families it is a problem between shifts of nurses and between the aides that are coming on and going off shifts and between aides and nurses it is a problem between care in agencies and other agencies there are also differences in how different medical disciplines or orientations evaluate cognitive conditions a psychiatry s may not evaluate evaluate a person the same way a neuro psychologist as also their approaches to dealing with the disease or the condition process is different and sometimes it is that one deals with the disease and the other deals with the person another area of communication needs to be monitored differently or cared for better involves the personal medical records of the individual the personal medical records should be sacrosanct and this is an area that needs more oversight my mother was in for nursing homes and all for added diagnosis is that we're not hers and not given to her by a doctor and many subtracted diagnosis that needed to be in her records in one nursing home a person across the hall came in the same week my mother did to the nursing home there were some very slight similarities in their names very slight my mother in debt up with the other woman's diagnosis is added to my mother's chart oh dear if i hadn't checked routinely for such things she have been given medication she didn't need or prevented from having something that would have helped her given because they thought she had another problem that would have contra indicated that medication she would have been observed as being or reacting to things very differently because their perspective of her would have been and their expectations of her would have been different because they would have seen her through the eyes of that diagnosis that she did not have her survival might have changed the survival of her condition and how that c or that new symptom that came up all of those situations would have been affected by their difference in perspective by the third nursing home i was checking at least every other month for her diagnosis and it was important to have access to the records from her medical and her eye doctor that attended her before going into nursing homes so that i could prove the facts of her medical status i also found it important to check her medication list every month even though family is supposed to be told when medications change and when antibiotics are started stopped at cetera this was never consistently done in three out of four nursing homes some regular medical doctors or internal medicine doctors gave anti psychotics to people i have been able to obtain exact definitions but i believe the obra eighty seven which is the federal law passed in hundred eighty seven says that this cannot happen without a span of time of specific criteria happening and a specific span of time of observation in hospital i saw paperwork where a person was labeled as psychotic for talking about angels according to the new psychotic di a psychiatric scuse me according to the new psychiatric diagnosis definitions seeing and talking to angels is a disassociate disorder and not a psychosis anyway this is another point to ponder isn't it in our family we all believe in angels another area of documentation is the death certificate my mother's death certificate was somewhat wrong the space of time that defined her illnesses were wrong i made sure both of these things were changed on the death certificate here is why i called the center for disease control i asked if research is done based on death certificate information they give statistics on diseases like are they used to determine how many people died of certain diseases as defined a certain way i told that this was true and that this sometimes was how information was gathered i know lots of people who tell me that their parents or spouses or loved ones have mis information on their death certificates how much research is being done based on death certificates that have misinformation i called the bureau of statistics in two states and asked the same questions do you know that many death certificates are filed incorrectly with incorrect information how can you give information for research if the information may be faulty i was told that this was taken into account now this makes me laugh how can they possibly know if the death certificates are twenty percent or fifty percent full of misinformation and if the time that is given the time spans for the diseases are also wrong they won't know what initiated the condition or the disease in many cases so that complicates the misinformation it skews the results and the facts of the research where do we go from here the most important thing right now seems to be to standardize what they are talking about so that communication is better and the individual is protected from mistakes as part of the caring for the people we need some national agreements on diagnosis definitions and proceed gers this would also affect how death certificates are filled out there needs to be oversight that protects people from mis medications misdiagnosis inappropriate reporting on medical records and about information being misused i think this would happen if our systems were set up as people standard instead of medically centered treating people and treating diseases are not always the same thing people cannot be seen as the things or diseases to be put into a time schedule if they are first seen us papal before they are seen as a disease the conditions in which they live will be very different to have license social workers and therapist that are not paid for by the nursing homes but are responsible to the community for the welfare of the residents makes a separate path from the medical only line of care and control where hope people were not diseases and medical attention alone is not enough for people in nursing homes these and other issues involving the oversight in hospitals and nursing homes will be discussed in succeeding programs some things for you to watch for evaluate in just gas or what is happening in congress with both the health care reform and other issues that are related by going to the national  less than honest with me in two states on the oversight and the efforts of government agencies to see that our elderly are properly receiving the standard of care that has been outlined by medicaid but they do provide good information on their website about what is being done i do believe that they need to focus more on helping the most frail and vulnerable elderly those without voices please remember that monies have been reduced by congress for things like dental for our vulnerable elderly in nursing homes people do die of septic infections from improperly care for teeth and it's not a pleasant way to die the national council on aging is promoting health care reform to include more chronic care strategies please remember that this that this council has been arranged around for a while and they are good with identify identifying care needs in the community but mostly with those people who are still able to use their voices as community members we still need to be watchdogs the silver we baby boomers are the ones to keep our eyes open and our voices active because the generation after us are too busy finding ways to provide medical coverage for their families and working multiple jobs to keep body and soul together for their families these are not easy times they are exciting and can be exciting if we see them as an opportunity to make change and make things happen to better improve our society and our communities let's make a better world for our future generations survive all let's make the future full of greater possibilities and let's make our voices  there are lots of groups now making their voices heard however the elderly cannot be doing the same thing and protecting their securing the safety of our elderly is not happening they are left in positions of honor ability to politics corporate regulations for nursing homes are made at the department of health and human services also many regulations vary from state to state and are made at an agency level outside of the national legislative process congressman adam smith's office contributes to that h r twenty five twenty two nursing home patient protection in standards act introduced by lucille roll roy our lord from california is now in the ways and means committee and in the house inner g and commerce committee please keep updated on this and other pending legislation by going to thomas dot locked out of thomas library of congress government you can research by putting in the bill number or by putting in a topic such as nursing home resident advocacy or any other of your choosing