Skip to main content

tv   Hearing on Caring for Elderly Americans  CSPAN  November 15, 2019 1:52am-5:30am EST

1:52 am
[inaudible] i hopes for everyone everywhere.
1:53 am
1:54 am
[inaudible conversations] >> with members please take their seats. the ways and means committee will come to order. good morning and welcome. we arere here to discuss a difficult issue that confronts nearly every family in the nation and that is care for our loved ones as they age. it's certainly appropriate we work to address this matter in november which is alzheimer's awareness month and u.s. national family caregivers month. a deeply personal issue for many of usit in the room and for thoe who haven't personally struggled
1:55 am
to ensure an older relative receives the care they need you must certainly know somebody in your life who has. navigating a fragmented and insufficient long-term care system if you not only confused and emotionally taxing, but also enormously extend the indeed even unaffordable. around the clock in-home care costs about $180,000 per year. it costs over $80,000 a year to live in a nursing home, and assisted living costs $43,000 a year. these weigh heavily on aging americans and their families as they try to planns for future long-termut care needs. most americans want to engage in eieir homes, but they need help to stay there relying heavily on family members and friends for day-to-day. uncompensated caregivers like a witness christina brown rb on heroes in many of these cases. often their own health, finances
1:56 am
and family relationships become strained as they take on the caregiving roles exacerbating the challenges in the nation failure to guarantee paid family medical leave compared to other industrialized nations. we want to thank christina and all of our witnesses for being here today who graciously pulled out a their personal stories and share their expertise. at this time i want to do something that is a bit unusual and that is they want to yield my time to congresswoman linda sanchez who has recently told me of her family's moving story caring for a loved one experiencing dementia asan theye aged. with the yield to her so she can share her experience with the committee and a reminder this is neither a democratic nor republican issue. ms. sanchez. >> thank you mr. chairman. i'i am grateful for your leadership onn this issue, and i am so pleased you call the fulll committee hearing school committee members have the chance to address this incredibly important area of
1:57 am
healthcare and finally, i want to thank all the witnesses for joining us here today and to give us ideas and stories on what they come front. for millions of american families much like my own, the heartbreak of watching a loved one struggle with alzheimer's in order related dementia is a pain that we know all too well. and this devastating disease disproportionately affects certain groups especially women and the latino community. indeed latinos are 1.5 times more likely than non- latinos to develop alzheimer's disease. by the year 2030, nearly 40% of all americans living with dementia will be latino and african-american. but it's not a disease that is singular to the minority communities. it affects every community. these statistics should scare all of us. i understand the pain that it brings to families because my father recently passed from imzheimer's.
1:58 am
we saw him struggle with the disease for more than 15 us, and it was a long, slow, painful decline. it wasas frustrating to watch a once vibrant man who sacrificed and have done so much for my family slowly lose its independents. and it wasam equally hard knowig there was nothing i could do to stop the disease's progression. as if that wasn't cool enough, two years ago, my mother was diagnosed with thehe same disea. alzheimer's is relentless and it is rule and it doesn't progress speed.nstant there are good days and bad ones and there are times when the scale and magnitude of the disease seems pretty overwhelming. but i am one of the fortunate ones. i have a large family. i come from a family of seven brothers and sisters and we share the financial and caregiving burden for my mother as we did for my father. we are fortunate because we all
1:59 am
live within 30 minutes of her home and within 30 minutes of each other and fortunately for now, my mom is still living in her home, but not everybody is fortunate to have the large support network that we have. many people are only children having to care for aging loved one. many are in the generation having to raise children into iocare for aging parents. many don't even live in the same date as their aging parents. so we rely on caregivers and the statistics on caregiving in america is astounding. over 40 million americans currently deliver unpaid care to an aging relative or friend. the cdc reports within 15 million americans barely half of all caregivers provide more than 17 billion hours of unpaid care for family and friends living with alzheimer's. about two thirds of these
2:00 am
caregivers are women, thus they are disproportionately impacted, and another corporate care for an aging parent and for children under the age of 18. hispanics and african american caregivers experience high burdens from caregiving than their counterparts. we have to address successful strategies for dealing with our aging population. and we must help caregivers and ease their financial caregiving burdens.
2:01 am
topic forward. let me not recognize the ranking member, mr. brady for an opening statement. >> thank you, chairman and neo. repugnance have a long history of supporting americans seniors working across the aisle to make meaningful strides to improve the health and social services they rely on. with 10000 baby boomers retiring each day republicans have been leaders in helping america's aging population. in 2003 under the leadership of president bush and republican congress i was proud to help create the first time for the first time in the affordable life savings prescription drug plan for seniors. 43 million americans enrolled in this program which came in 50% under budget and still affordable premiums. additionally serving with the committee on proud to champion the bipartisan champion act. we know how medicare takes care of patients after they leave the hospital is equally important as the care they receive while they
2:02 am
are in the hospital. status quo is not working for aging medicare beneficiaries in care and settings. the impact act enables medicare to collect data to achieve three goals. compare quality among various settings, improve the way hospitals provide plan for patient discharge and use this new information to make improvements to how medicare pays the facilities while ensuring our patients are receiving the incorrect setting for care. over five years later this law is working and they are collecting data in a nonpartisan medicare payment as a way ahead of the curve taking steps to determine how congress can create a transition with the unified post acute human system focused for seniors on quality and accountability. though there is still more to do this work means america's seniors and medicare are in a better place. also serving this committee i
2:03 am
was proud to join our social security subcommittee, sam johnson and john larson for the past to strengthen protections for social security benefits act. the social security's [inaudible] when a person is unable to manage their own social security benefits. representative hayes played an important role in how we care for aging americans. however there were serious concerns about representative pays the congress friendly needed to address. together republicans and democrats who worked to strengthen to oversight also reducing the burden on family members. gave americans a greater save in selecting their pay if they should need one in the future. this ensures this was a person they could trust. he's not small actions and they made substantial changes to our title i programs to help those deceiving social security and medicare benefits. republicans remain eager to work
2:04 am
with the democrat colleagues of continuing strengthening these emergent programs for american i do admit part of our work is in congress is to stop what we believe are dangerous ideas from being signed into law. we are concerned and speaker pelosi's cures for patients act would stop new cures from medicines from being developed for our seniors. that partisan legislation which passed out of this committee would tell her seniors were struggling with als and all summers those who care for them and hope for a cure is at risk. hr three is the first step in what we worry is a very extreme healthcare agenda including medicare for all. the effects that this radical healthcare program approach would have on her seniors i think is unfathomable. the private planet seniors enjoy is gone and the private plans of american workers, including caregivers for seniors, eliminated. in their place long white lines and not being able to go to the doctor of their choice.
2:05 am
that's eight life-threatening change, especially for our seniors, many of whom fought for us, raised children and grandchildren so we could work toward living the american dream. we owe it to our seniors and those who care for them and we continue to improve these programs. we will have a future generation to ensure our safety net can continue to deliver on this promise. to date we will hear from a panel of expert witnesses about serious programs plaguing the medicare program today, especially for the sickest patients. some of these are called so severe they jeopardize the lives of our seniors. we have to find a way to work together to strengthen these programs for current and seniors in the future. we need to work diligently to protect our vulnerable members and seniors today but we also need to empower future seniors. need to guarantee them choice in the healthcare for what they want not what washington things will work best. we want to organize one of our
2:06 am
staffers as she departs for new adventure in her home state of ohio. carla did exemplary work and has been critical to advancing bipartisan a solution for the problems americans face each and every day. her departure is bittersweet and we will miss her and wish her the best of luck. thank you, chairman. >> thank you. let me speak for the majority here. we want to take time to acknowledge carla's fine work as a member of the staff and ways and means committee paid she will return to her hometown in cleveland but one of the things we've been fortunate to have here is the ways and means committee is a traffic staff. carla has provided dedicated service to this committee and when representative price served as a member and his professional staff advisor to ranking member brady. we are grateful for the work she is done on opioid measures in particular and wish her a well and thank her for her service that she embarks on her new journey in life. [applause]
2:07 am
>> i want to thank mr. reddy and without objection all members opening statements will be made part of the record. i want to think artist and wished witnesses for taking the time to appear before us today to discuss the very important issues. first, we want to welcome christina brown a caregiver and current medical student and the chief public policy officer of the all timers association and then we have joanne lynn, health and aging policy fellow from the program to improve eldercare. next, we have the national coordinator for elder justice coalition. richard mullet is the executive director of long-term care community coalition and finally we have the president and ceo of the national hospitalist and palliative care organization.
2:08 am
each of you will have your statements made part of the record and i want to ask you to summarize your testimony in five minutes or less and to help you with that time there is a timing light at your table. you have one minute left the light will switch from green to yellow and finally to read when you're five minutes are up. ms. brown, would you please proceed. >> good morning. chairman neil, ranking member brady and distinguish numbers of the committee. thank you for the opportunity to share my thoughts this morning. my name is christina brown. on the caregiver and medical student and when i was 16 my life suddenly shifted in my mother at 43 years old lost the ability to walk due to multiple school owes us. she could no longer stand, eat or bathed without assistance. i became her primary caregiver and for six years provided ten hours of care each day. in spite of what many may think having a disability does not guarantee access to resources. because her mother has an income of 36000 from her divorce settlement and is younger than 65 and lacks a ten year
2:09 am
implement history has been denied medicare, social security disability and medicaid despite its expansion. her private insurance company like most does not cover homecare for daily needs so i filled in the gaps. in high school i would wake up at 5:30 a.m. to help with the bath and lift my mother into fed or into her wheelchair and despite being a straight a student i almost did not graduate from high school because i had so many absences from taking care of my mother. i routinely missed meals and sleep and strove to hide my exhaustion, weight loss and social isolation from the people around me. i lost my adolescence. i declined for ride merit scholarship from out of that i long to explore. my sister and i moved back home because he cannot afford extra help. we had few alternatives. most nursing facilities serve only seniors and even if we found one for younger adults like my mother the cost of that
2:10 am
care exceeds $10000 a month. homecare is only slightly more affordable at six or $7000 a month. like many families we cannot afford full-time coverage and like many caregivers i was made to feel invisible. i health and my future did not matter. i have taken out loans to pay my mother's mortgage and worked weekend job on top of being a full-time medical student and combined with my sister's meager salary that barely ensured my mother's survival that we are running out of options. we could sell our home to qualify for state assistance or i could leave medical school to become a full-time caregiver for my mother. even these extreme temporary measures would only drive us further into a vicious cycle of financial instability. caregiving fuels generational poverty and has even greater impact on millennial's and women who take on that role. when women become caregivers they become two and half times
2:11 am
more likely to live in poverty. this past september our situation took another turn. my sister who had been caring for my mother while i had been away at middle school goal was moving to start a new job. i canceled my board exams and dropped everything so i could fly home. since we cannot afford a home care agency recruited and caregivers i found online. i filled out reams of applications and made a flurry of phone calls to my mother's social worker, health and human services deferments and the regional disability research seeking financial support. so far none has arrived. i returned to campus in this arrangement is tenuous and all-consuming already home health aide said with unexpected lead leaving my mother to forgo regular meals and bathing while a thousand miles away i scramble to find a replacement. from week to week still do not know whether my mother will receive the care she needs and as this committee meets to discuss caring for aging
2:12 am
americans i ask you take steps to ensure families like mine do not continue to fall through the cracks. first we must limit age gaps in income gaps so that middle aged, middle income adults with disabilities and qualify for long-term care through medicaid, especially when their home care expenses are exceed their income. the medicaid cut off should not be based on income alone but rather on income adjusted by care costs. the family medical leave act should provide paid leave to caregivers and universities should offer support siphons to help ease the burden on student caregivers like me. third, we must aim for universal long-term care to ensure every adult with disability has affordable access to sustainable care. this will be costly but doing nothing will only serve a silent punishment to individuals and disabilities and their caregivers. no family or young caregivers
2:13 am
should have to sacrifice their health, education and financial stability just to meet basic human needs. numbers cannot capture what we have occurred over the past decade and sleep as nights, dreams deferred and my mother called me to apologize for being sick. despite the uncertainty of the situation were carving out a new future for my family and others like ours. thank you for listening. >> thank you, mr. brown. would you please proceed? >> chairman neil, ranking member brady and numbers of the committee, thank you for holding this important hearing today and for the opportunity to justify and how americas is caring for its aging population including those with all farmers and men shut in our caregivers. all farmers is a progressive brain disorder the damages and eventually destroys brain cells. it leads to loss of memory, thinking and other brain functions. ultimately all timers is fatal and we have and to celebrate the
2:14 am
first survivor of this devastating disease and more than 5 million americans are currently living with all summers and many more are living without diseases that cause dementia. without significant action as many as 14 million will have all timers by 2050. in addition to the suffering caused by the disease all timers is also creating an enormous strain on family finances, healthcare system and federal and state budget. all timers is the most expensive condition in america with costs set to skyrocket skyrocket at unprecedented rates. just this year alone medicare and medicaid will cover the cost of more than two thirds of the cost of the care of persons with all timers and estimate 195 million dollars. fortunately no options -- beginning in 2017 medicare now reimburses physicians and other healthcare professionals for providing comprehensive care planning to individuals with
2:15 am
cognitive impairment. this is a critical step towards improving the quality of care and quality of life for those with alzheimer's and their caregivers. an allergist show that it can lead to fewer hospitalizations and your emergency room visits and better medication management. it allows diagnosed individuals and their caregivers to act as medical and nonmedical treatment and clinical trials and support services available in the community. however, upon analysis of the data the authors association has determined that fewer than 1% of those living with all timers and other dementias receive this much-needed care planning in 2017. fewer than 1%. for the benefits of care planning to reach more millions affected by all timers more clinicians must use the care planning benefits. the bipartisan improving hope for alzheimer's act would help achieve that goal by regarding the deferment of health and human services to first educate
2:16 am
clinicians on the existence and importance of medicare care planning benefits and second report to congress on the various individuals receiving this service and how to increase its use. this bill has garnered significant bipartisan support in both chambers and we urge the committee on ways and means to hold up mockup. look forward to working with the bill sponsors and committee leadership and ensure its movement in the full house and senate. robust care planning is the first step to learning about long-term care options and selecting the preferred and most appropriate services for persons with dementia, their families and their caregivers. these into visuals need access to a wide variety of services such as adult day, home health, respite, therapy, residential facilities and nursing home care. because those with dementia and their caregivers have unique needs to change over the course of the disease they typically use long-term care services as their condition progresses and at each state of the disease caring for a person with all
2:17 am
timers and other dementia pose a special challenge and for example, family caregivers help individuals managing escalating difficulties with communication and behaviors as well as increasing the need for supervision and personal care. as symptoms worsen family caregivers experienced increased emotional stress and depression and health problems and depleted incomes. effective evidence-based interventions to reduce depression among caregivers help them up with their often overwhelming responsibilities and can help keep the person living with all timers in the home longer. other needs of persons living with dementia and their caregivers stand well beyond the healthcare system and upon diagnosis of active persons not only need help managing other chronic decisions but often in community-based support like safety assessment, legal and financial services, transportation and health managing dementia related hate years. the healthcare and long-term service and support systems as they exist today all too often
2:18 am
fail those who are living with dementia and their caregivers. we must do all weekend to ensure the best quality of care and quality of life for those living with all timers and for those care for them. look forward to working with committee to advance bipartisan solutions that will have amenable impact on america's seniors, including passage of the improving help for all timers acts. again thank you for the opportunity to testify and i look forward to answering any questions you may have. >> thank you. doctor lynn, would you proceed please. >> good morning. chairman neil, ranking member brady and other members of the committee, thank you for holding this hearing. we aim to focus attention on the challenges that place us within just us as we double the number in ten years living with progressive disabilities. i commend the committee for your attention to retirement security and medicare coverage for hearing, vision and dental care. i'm especially heartened that
2:19 am
you are willing to address the challenges of long-term disability. most americans including most of us in this room will live with serious disabilities in old age. for an average of two years we should be able to count on living comfortable and meaningfully in those years with costs and burdens we all can bear weather as elders, family members, caregivers or taxpayers. i have been a position for 45 years, mostly serving people living with serious chronic conditions in old age and i've worked in research, education, public health and improvement implementation's. i have come to realize that our beloved united states faces a serious challenge with the oncoming numbers of elderly persons to arrive at old age with an adequate finances and who eventually will live with serious disabilities. without changes within a decade most people who live their working years in the middle class will be unable to afford
2:20 am
housing in the retirement. stop to think about that. will we really tolerate millions of elderly people on the streets living in cars and tents and will we still pay for expensive hospitalizations and drugs for people who cannot at lunch? will it be okay for me to write a prescription for a thousand dollar drug for an elderly person living in a car without food? families will often try hard to help and you've heard one story of that which is the very definition of family but that means we will be spreading impoverishment across later generations and already many cities have half-year waits for home delivered food or for people who are acknowledged to need home delivered food. the weight for disability adapted to senior housing in most areas usually ends with nursing home placement or death, not a house. perhaps family caregivers and
2:21 am
their adult family members living with disabilities will generate a strong voting block to push for change. we surely should. half of retirees now have less than $25000 in savings beyond social security and that's before they are ill. for many reasons we will not be able to support one another in old age using contemporaneous taxes alone. there will be just too many frail and impoverished elders. we need to engineer strategies that would get more of the cost covered by savings and one appealing proposal would be to have government at some level pick up the cost of the longtail of the long-term care and leave the front-end to the elders with local arrangements. waiting time before the government picks up the cost would depend upon the elders earnings and the well-off people may have to cover five years while middle age mourners may only cover one. this makes it cost much less
2:22 am
than 1% added to the medicare tax and would open the market for a variety of savings arrangements, including tailored insurance products. if we can get a substantial proportion of elderly people paying their own way to a period of visibility we would be a much better position to provide support for all of us. there are other ways to get this done but we need to be developing and testing them now and there's a long leadtime to have effective savings plans for old age. we also need attention to both family and paid caregiving into housing, workforce, chance rotation and food. we need to rediscover neighborliness and we need bold innovation and we need to lean our way into a set of social arrangements that will serve all of us well. we can do this. this is a brewing calamity that could be averted. we all have a stake in it. everyone here will be touched,
2:23 am
either directly or through family and friends. will we be a nation that learns to ignore elders dying without homes and food? or will be learned to arrange things so that most of us have lives that are triple and meaningful despite the disabilities and the shadow of death. you have a large voice in the course we take and i hope you will take up the leadership on these issues. if you do not in the nation continues to slide into abandoning us in our last phase of life we will get what we deserve. misery. we can do better and you can help. >> thank you. >> chairman neil, ranking member brady, dissing customers of the committee, the national coordinator of the nonpartisan elders justice coalition are proud to participate today. chairman neil thank you for your strong advocacy for nursing on hospice residents. caring for aging americans is a challenge whether they live in facilities or independently. achieving quality care is the
2:24 am
goal, supporting it is the main obstacle. the cost of care report that says the median national care is above 90000 a year and home health and about 50000 a year assisted living above 48000 a year. savings are being tapped and the gallup poll showed seniors drew 20 to $7000 from long-term savings just in last 12 months to pay for health expenses. in healthcare saves more than half a middle income seniors over 75 will be able to afford medical instances or assisted living in ten years. how to make your affordable? first, we must not put caps on care. continue to have it cover more home and raise reimburse and raise for nursing home staff. let us consider a long-term care benefit under medicare. the tax code cannot more with the tax credit for family caregivers or deduction for purchase of lawncare concerns the provide choices and a strong consumer protections. let's look at emerging states modeled at the washington long-term care trust act which provides lifetime benefits for long-term care finance by
2:25 am
premiums paid. one issue of quality care is also important and especially in nursing homes with less than 5% of older adults live in these homes but the wild abuse deficiencies make up less than 1% of the total they make double inside of abuse deficiencies from 2013, 2017. a testimony from a daughter whose mother died from dehydration in a nursing home given a five star rating by cms. this recent headline police charge three nursing home with running a fight club of patients with dementia. please note there are many fine nursing homes in this country and i know because my mother lived in one but we where problems exist we must acrid there's been a pattern of abdication of response ability by certain federal agencies in protecting nursing home and hospice residence. we need to revisit conditions participation for any personal or hospice receiving medicare or medicare funds. problems like failure to report abuse and neglect and why it happens and failure to recruit qualified staff there must be
2:26 am
consequences tied to participation. on the hospice front i commend the introduction of the bipartisan improvement act and we must do more. they must report cases of abuse and laws mandating proper nursing homes must be enforced and we need better coordination between all levels of government on emergency response plans for nursing homes. and for the 95% of all adults who live in the community we must reauthorize the elder justice act. moving to rural oral adults want to trade 5% of older megan's living in rural america their challenges are real and transportation, high housing costs, opioid price and lack of economic development but the real crisis is in healthcare. rural elders have chronic disease and visibility on lower prevalence of behaviors and rising rates of suicide. access to healthcare is a genuine issue in an initiation to a pronounced shortage of care personnel we have a doubling in rural hospital in 2013, 2017 compared to five years ago.
2:27 am
for solutions let's continue to expand telehealth by closing the digital divide and dedicated funds for the opioid crisis must go to rural and before a role hospital closes to declare a public health emergency and may be averted and expand the provider grant program. also today more than 1.1 million older adults or lgbtq and many have endured years of determination and plumbing and housing and inserted in silence. now as they age they encounter determination and long-term care facilities which led to the long-term care quality index to promote care and facilities including having trained to staff. more facilities should adopt this. we also need to designate lgbtq as an underserved to get data. moving to food insecurity whether people can obtain food to lead a healthy life. $5.59 for feud and security doubling the rates from 2001. factors that contribute include low income and inadequate
2:28 am
transportation. food insecurity poses a threat to health and one serious consequence is malnutrition with which one into older adults is at risk read congress can help maintain the funding levels for fy 202014 nutrition programs and the senate could pass the house termagant act reauthorization which is first time malnutrition screen expand outreach for more results they get snapped into international inventory on food and strategy to reduce them and have cms approved malnutrition wally measures. in less than ten years the 65 and older will go 20% of our population up from 13% grade we enjoy a greater quantity of life and are president now need to focus on improving the quality of life. thank you, mr. chairman. >> thank you. would you proceed? >> chairman neil ranking member brady and establish members of the committee. thank you for holding this important hearing and inviting me to testify. my name is the executive
2:29 am
director of the long-term care of community coalition, nonprofit, nonpartisan organization dedicated to improving care and dignity for residents in nursing homes and assisted living bird we conduct substantive research and the extent to which standards care who are typically elderly and frail. half of all people who reach the late 50s will spend some time in the nursing home taking nursing home quality to virtually every family in the united states. additionally as this is all timers awareness month it's important to note for them for 2% of residents in assisted living and nursing homes have some form of dementia or cognitive impairment and two thirds of dementia related deaths are nursing homes. nursing home assisted living safety is of the utmost importance to living those with the disease and to the family. since the 1987 reform law every family who turns to a nursing home for care with the short-term rehab, long-term care is promised that they will be
2:30 am
safe and receive needed care and services and be treated with dignity. unfortunately far too often the communities in every state in our country those promises are broken. the reform law and existing standards are strong and the persons and failure to ensure basic compliance with these standards by both the state and census for medicare services cms has resulted in a situation where a sophisticated province have an industry have operated as the owners seem to fit. there is little to stop nursing home comedies for maximizing profits at the expense of residents care. some nursing homes honor their promises to residents and families but far too many do not. most but not all nursing homes have insufficient staffing to meet the clinical and hygiene needs. over 40% of u.s. nursing homes have what we call chronic deficiencies and repeated violations of the same rate of the tory requirement year after year after year. abuse and neglect, even crimes
2:31 am
against residents are persistent and pervasive. approximately 10% of residents are administered anti- narcotic drugs despite the fda's warning them not to use these drugs due to substantial risk of harm and even death. basic infection control and prevention are inexplicably ongoing challenges and according to the cdc quote, one-3 million series of actions occur every year in these facilities. affections are a major cause of hospitalization and death and many as 380,000 people die of the infection and long-term care facilities every year. these are not abstract problems. affordable pain and substandard care are part of hundreds of thousands of nursing home residents every day. this now includes holocaust survivors, veterans who fought for our country and mothers and our fathers but we forget here about seniors who are drugged into oblivion rather than provided essential care services or even rudimentary activities to meet their needs.
2:32 am
basic care, freedom from pain, hospice care and the chance to die in comfort with dignity are increasingly out of reach for too many of our seniors because their facilities are profits for speed does not have to be that way. enforcement of minimum standards is needed we must address the disconnect between the promise of the nursing home reform law and the reality for family. the state agencies or cmos do not fulfill this and the integrity of the medicare, medicaid programs. you must tell the line to undermine regulatory minimum standards and reduce the already low frequency of nursing home inspections. residents lives in family peace of mind depends on it. we must codify safe staffing standards. we must establish medical loss ratio of a nursing home. american families and taxpayers have a right to know that a reasonable% of the public funds
2:33 am
that nursing homes received provide care to vulnerable seniors is going to their care, not being siphoned off into uncapped profits under restricted in ministry of expenses or a space only happens unlimited and unaudited related party transactions. lastly, alternative options to nursing homes must be safe, simple and affordable food families want options to nursing homes the provide safety and more homelike setting. on most cases there opening up in the utter lack of federal standards has unsurprisingly increasing reports of abuse and neglect. seniors and their families deserve better but thank you for your time. >> and key. would you proceed. >> chairman neil, ranking member brady, reg numbers of committee, thank you for the opportunity to testify at this important hearing. i want to single out congressman reed, a hostage volunteer and representative and others for their and we can infer the
2:34 am
strong leadership of hospice and palliative care. i'm president and ceo of the national hospice organization and founded in 1978, nhp seo has been the largest membership organization for providers and professionals for people affected by serious and life limiting illness. nh pco includes over 2000 hospice providers and palladium care that accounts for nearly two thirds of those they get hospice care and employ over 60000 professionals and hundreds of thousands of volunteers. hospice is a national treasure and it is not and never has been and shouldn't be a partisan issue. we all get sick at some point in our lives and we all die. from the beginning the hospice benefit has been bipartisan and the fact that former senator dole and former congressman leon panetta, father of mr. panetta on this committee, were two of
2:35 am
the bipartisan bicameral leaders of the fledgling hospice movement on capitol hill almost 40 years ago. in 1982 this very committee held a hearing on the legislation that would create the medicare hospice benefit and was introduced and supported by over 200 folks including representative bill without their early leadership in advancing hospice the benefit would not be here today and without your leadership the benefit will not be where it needs to be tomorrow. for many people hospice provides the level of care for people at the end of life and is hospice is every thing we want healthcare system to be. it's person centered, compassionate. most people assume hospice is a place, not a place but a type of service. it's usually delivered to people in their home. hospice also cares for people as people. many people where they are in one of the things were proud of is that we honor veterans programs and you see the pin here and i urge you all to
2:36 am
support that we honor veterans and attend opinion ceremony for folks in your district. we offer much more than just hospice care for people but also support whole communities through disaster relief and assistance in the wake of 911 and shootings in las vegas and orlando national disasters like hurricane katrina and maria, floods and wildfires and we care for families and care for communities and do much more than providing care for individuals. there are challenges in hospice. half of people never get hospice and of those who get hospice most get it for only a few days or a few weeks. we have challenges in the workforce and 10000 people are turning 65 every day and we have challenges and rural and underserved communities and of accessing hospice can be readily difficult. i visited a hospice in montana this past summer that served 11 counties and we are so thankful representatives for their challenging in support of the
2:37 am
rural hospice act. it also provides support for assisted federally qualified health centers. above all else we have to ensure the patience and soundness get care and quality of hospice care possible. we take seriously the sets of oig reports that outlined issues with cms oversight of hospice and describe were examples of care and we are excited about working with senators portman and cardin on hospice care improve and act and look forward to working with representatives panetta and read on the house version. i want to be clear for any provider that is not fully committed to provide the best quality care should be in a another line of business. speaking of gaps i want to spend most my time echoing words that congresswoman sanchez talked about and this is very personal for me i have two great aunts. one is great and ruby lives in richmond and one was great aunt grace. they are example of the failure
2:38 am
of our healthcare system and great aunt grace was 95 and fell down her stairs and went in and out of the hospital and ended up dying on hospice care for a few days but she's an example of healthcare system that requires you to be broken in order to fix you. great aunt ruby is still at home and has copd and is dying but will not accept hospice care which is my failure as well as failure of this healthcare system. as a result when one is our default healthcare system and we can do better to get people into this centered care before they decline. what if we provided person centered interplay does americare before they cried out for help and what if we did it without people having to give up and we offer a vision for some changes that we can see in our healthcare system and we look forward to discussing that with you during the question and answers. thank you for your time. >> thank you. we will now proceed to questioning under the five minute rule and consistent with committee practice and i will recognize those members present
2:39 am
at the time that the gavel came down and in order of seniority. let me recognize myself. doctor lynn, we both have highlighted that we as americans are wholly unprepared for aiding on a myriad of fronts, financial, long-term care needs and beneficiary protections amongst others. doctor lynn you know i've been a longtime champion of retirement and we testified on behalf of all americans from 65-74 and have no retirement savings at all and caregivers lose hundreds of thousands of dollars from retirement by caregiving. what suggestions would you have for those of us on the committee to address that issue? would you please speak into the microphone's? >> there clearly will need to be governmental action. that could be a federal backstop on the cost of long-term care and if we had a federal backstop
2:40 am
on the cost of long-term care that means the front end and the first part of the long-term care would be up to others like the federal government or even a state government would pick up the long tail and then i think they would be possible for there to be savings plans and insurance games that would allow people to common to old age with much more reparation and i dropped my own long-term care insurance this year when the premium doubled. i think that it is in a present market it is not a viable product but it could be. i am sure there are other ways washington state has started a front end insurance scheme where if a worker pays in for ten years they are guaranteed up to $36500 in coverage and minnesota is considering adding the same to medigap and ma plans and i think they are probably a number
2:41 am
of ways to get more financing into the long-term care system the on medicaid and i'm very worried about medicaid being the main way to pay for long-term care. it is very difficult to administer the boundary and we have many more people in the income gap just above medicaid who cannot afford to pay for what they need but who can't get into medicaid because they have too much encumbered an example of that was earlier. that number will grow and the state budgets that have to be balanced will probably have to restrict eligibility for medicaid over time or at least not grow it at the rate of the population needs. we really need a vigorous conveyance of approach and i think the government will have to be involved and i think we also will have to develop strategies that end up making it possible for ordinary people to go in to requirement with
2:42 am
adequate retirement savings and the security against the cost of long-term care. >> thank you. mr. kato, there are a number of organizations in massachusetts that are attempting to address food insecurity. your testimony has discussed malnutrition in older outlets and in this day and age it's sad to acknowledge there are older americans who do not have food on their tables. what do you think we can be doing in terms of healthcare and medicare to ensure that our seniors have enough to eat? >> massachusetts is a leader and a great network of nutrition services across the state in massachusetts is only one of two states create bylaw amount attrition commission. in 2018th their work has continued and i hope to add summary to my statement in the record. in addition boss medical and proud to serve in the national advisory board of the human nutrition resource center at the university which is important research work and practice work in food insecurity.
2:43 am
let's begin by monitoring closely medicare advantage as it moves into the nonmedical supplemental services that are special for the chronically ill. nutrition is a key medicare program i can cover expanded home delivered meals as well as meals in a setting and programs providing food and produce with the key will be what will they do in 2021 and it's important for local connections to be made between nutrition service providers and medicare advantage plans because if it is done correctly there will be new funding for mark feels and food and also we should be thinking about extending this to medicare if it works well. i also think we should think about expanding medical nutrition as a care service and as we talk about earlier let's move forward on a dental benefit for medicare. it contributes to mount attrition and this would continue if you do it for the positive more services than ever before. i would also state let's determine the data collection
2:44 am
how much programs like the older americans and nutrition programs save medicare and medicaid each year and put those savings into community-based programs which provide meals on a regular basis with five additional thoughts but all will submit them for the record. please, do breed you raise concerned about the quality of care for some patients are facing and while most nursing homes are providing food care you prescribe disturbing incidences of substandard care for families. i've been working with hhs to address the issue of overprescribing antipsychotics in nursing home residents. what suggestion you have along those lines for congress as we begin to talk about long-term care initiative? >> thank you for asking that. the overuse and inappropriate use of antipsychotic drugs in nursing homes and assisted living in other settings is disgraceful frankly and harms hundreds of thousands of people every day. i would say first of all families that we talked to don't
2:45 am
even know that their loved one is receiving these drugs or explicitly told by caregivers not to look up the drug online. it is really important that we have informed consent and is part of what congress would do is to pass an informed consent that has written informed consent and providers for the resident family to periodically review and again give informed consent is necessary if those drugs are to continue because it's very limited circumstances under which someone should be receiving an antipsychotic drug for any extended time period unless they have a condition of schizophrenia or another specific illness. secondly, we really need to require minimum staffing. as i mentioned in my testimony earlier the lack of staffing and the majority of nursing homes results in people not getting the care they need and results into many residents being given
2:46 am
these drugs as a sedative to make it easier to care for essentially for the convenience of staff who are not there. we need to have make sure there are enough staff to meet the clinical needs of residents. we desperately need a new study in the movement and recognition nationally on the astounding overuse of antipsychotic drugs in this country began in 2011 and as a result of a couple reports by the oig at the time who said that americans famili families, residents should be out reaching for solution and i was eight years ago. lastly i would say enforcement and i tracked enforcement very carefully around the country as well as the rates and cms when it launched the so-called partnership to improve dementia care they promised that there would be enforcement of long-standing requirements in regard to not giving unnecessary drugs and that enforcement has never happened.
2:47 am
>> thank you. let me recognize the ranking member, mr. brady. >> thank you for calling this important hearing. [inaudible] in your testimony you talk about hospice care and how reforms are developed in a bipartisan way and much like the benefit was recently created would bring hospice into the 21st century to address the growing needs. german neil and i after we in the wake of two disturbing reports detailing efficiencies and the quality of care delivered to some medicare hospitals we came together to send a letter to cms requesting information regarding to address certain issues but we also agree with you that drug icing has to come down and all these areas. we have to find a way to lower drug prices or patients and encourage more life-saving cures as we do it. we have been working together as
2:48 am
a committee on lowering those prices and that work has been set aside for hr three and we are as a rub against concerned that it will actually create fewer cures, especially for the most stubborn diseases we have and if you have an neighbor who died who died of neil blast, and another friend struggled with it and two friends who died of als in the neighbor once vibrant sterling with parkinson's and we are all hoping and praying and working for cures in these areas and it's worrying that hr three, which isn't going much past the house, would damage those cures in the hope for it. so, how -- i was in the alzheimer's walk the other day and i try to go every year and it's really inspiring that 2000 workers walkers raise a total
2:49 am
money and texas has 2000 people dealing with dementia and over a million caregivers. it's really just a great morning all around and i was so appreciating be a part of that and i was talking about how effective you are in both advocacy, research, support services and all the association does is terrific. my question is given the political landscape which is rough around here do you think having us finding a bipartisan solution for long-term care and finding that balance between lower prices and encouraging cures how important do you think that is for the alzheimer's committee? >> thank you for that question with i think everybody agrees that it can make this point for many diseases but you can from all timers as i mentioned we are longing to organize our first
2:50 am
survivor of this disease and have effective treatments that we certainly need to have that innovation and i think it's absolutely important we make sure that when those treatments are available that the millions who need them have access to those treatments. it's fundamentally important that congress continues to focus on this set of issues and they necessarily interrelate. to find the solution we need in the alzheimer's committee and so many others. >> we talked about hospice care so my mom you would have enjoyed her. she rates of us by herself and my dad was killed when we were young but she liked hearing the struggles so even though living with my sister the last couple years was pretty tough and in the last few weeks were especially so. hospice was great. it was a great comfort for her and was a huge help to us as the family and we got great care there but it's always regrettable that many hospice
2:51 am
have a deficiency in 2016. they had serious deficiencies and cms does not always have the tools in the toolbox to enforce quality of care other than simply shutting them down which we don't want to do or seniors and would it be helpful for congress for additional stitch authority to provide remedies for that poor performance short of shutting them down to ensure that seniors get that high quality care that you are seeking for them to have and if so are there any intermediate remedies that would be helpful to increase those quality and eliminate those deficiencies. >> thank you for the question would as i said before one of the problems with hospice is most folks don't know about it until it's too late. one issue we have is not enough people getting hospice care.
2:52 am
then we have the second question which is poor performing hospices and we fully support getting cms additional tools to provide better oversight of hospices. we focus in a couple areas. cms oversight and two is education of the hospice themselves part of the work the hp co does and three is information for consumers so we want consumers to be making informed decisions to be using hospice which is up there but not great and needs to be improved. better tools for consumers and additional oversight to cms and additional education which is something we can all do together is something we can all agree to. ...
2:53 am
we know that 60% of all caregivers are women and for low income women, is associated with an increased risk of poverty.
2:54 am
as a black woman to be adopted may you share more about the challenges you face. >> thank you for that wonderful introduction to the question. yes, the challenges that i faced in addition to the financial strain there is also the challenge of being concerned about my future and have printed that risk multiple times over the course of my lifetime because of the go healthcare. all of us have had to make such devices and concerns to have a way forward. does that help answer the question? >> if you care to elaborate mo
2:55 am
more. >> as i mentioned in my statement most recently i had to consider withdrawing from medical school. that consideration should be anything anyone has to work through especially since i worked hard my entire life to pursue this goal and hopefully make a change so i do ask for everyone to at least think about your own children or young people in your life whom you want to see succeed and we need to do more for young caregivers like me. >> doctor lynn, how could congress help others in similar circumstances, what can we do? >> the first year of developing
2:56 am
come more to community care you could appropriate money that would provide infrastructure and instruction. much more local innovation. we also could start supporting caregivers. the federal requirements for certification for electronic medical records doesn't require a spot to identify the caregiver in a medical situation. a person with disability could be at the hospital and the caregiver's name and identity isn't even in the record. how blind can we be. we have caregivers that have no
2:57 am
income that are in publishing themselves and an example of those that go down generations. people have a pension and social security and legacies are evaporating and long-term care so we need to have ways to protect the caregiver. many are giving it credit for their social security. many are given a stipend for doing caregiving. we do none of that. we make it difficult to be a caregiver. they end up losing their jobs. we need to acknowledge where we are and having a large of people that need that sort of support.
2:58 am
many of them are not terribly expensive. they are coming from what it is we need to do and what would happen in this situation obviously there ought to be a way she shouldn't have to give up her future and education to take care of her mother. >> thank you. my time has expired. let me recognize the gentleman from florida. >> thank you mr. chairman. as you mentioned, this is not a democrat or republican issue. it's very much a bipartisan issue that we all understand the significance of. i also want to thank the panel with witnesses. i'm in a district in sarasota. 225,000 seniors. all these things are very personal. i also want to just mention what
2:59 am
mrs. sanchez brought up. i wasn't going to say anything but it's appropriate she share her story. i was the oldest of six kids. my dad worked in a factory, never spent a night in the hospital and then we found out he had alzheimer's. it came out of nowhere. we were in denial frankly for a couple of years but we addressed it and i was fortunate because i don't know what we would have done otherwise. i took my dad in for 12 years he lived with us, my wife and myself, but it was tough to see something like that happen. i wasn't even sure what it was at this time, but again it was devastating and that's why my heart goes out. i can't imagine. we were fortunate because we could provide nursing and other capabilities but i can't imagine
3:00 am
someone that's in your shoes and we need to do more to help you. let me mention you being involved in the alzheimer's association, is there anything from a prevention standpoint i know there's a lot of things you probably look at the as it relates to diet and exercise i know there's not a magic pill that is it something are you spending much time looking at that because some people say with type 2 diabetics some of today's lifestyle but i'm just curious from your standpoint. >> we certainly see emerging evidence that that is in fact the case. a recent study was very suggestive of controlling your blood pressure and also the alzheimer's association appreciates the congress is support for medical research there's a lot of this research
3:01 am
to move forward. looking at those interventions so we have an evidence base and the reason i'm asking on a round table the other day in sarasota we have a hospice i am sure you are familiar with. they also provide over a million dollars where they finance themselves for tragedies locally whether it's national tragedies, shootings, opioid deaths are big in our area but the way in any big way in terms of providing families and others support. is that the case with others around the country or are we just lucky in our area? >> we are lucky. they are fantastic program.
3:02 am
thank you for your support of their. there's a number of other hospices around the country that not only provide the sort of bare minimum conditions of participation and provide support for folks in hospice and then the year after they provide support for their families. we go way above and beyond that. hospices in new york got involved during and after 9/11 and in la las vegas they got involved during the shootings and every time there is a flood or wildfire on any national disaster winds up happening is the first responders and also the folks impacted by the disaster have a certain amount of grief that follows after the news cameras move on and they are the ones that provided that support -- >> the other thing provided for opioids in our region has been a big issue but i do want to touch on the 55% of people that use and have medicare but use
3:03 am
hospice and other things. what can we do to educate and help them, encourage them? and i say that because i both my parents passed away and my wife's parents and if it wasn't for them it would have been a lot more difficult process to get to. >> one is in terms of education. it's about not giving up. hospice isn't about giving up. you're going to receive additional support and services. the second thing is changing some of the rules. it's true when people are eligible they have to make a hard choice do i continue to receive care or do i choose palliative care instead. you should be able to get both. it doesn't cost more money as a reform we would love to work on. >> truly insightful testimony this morning. i think this national family
3:04 am
caregiver month is an appropriate time to have the hearing and owner millions of people who are out there providing caregiving at great personal cost. i've seen estimates in my home state of texas as many as 3.4 million family caregivers who provide provide over 3 bills of unpaid care each year to secure the health and care of their loved ones. through the highs of new life and the lows of loss, caregiving clearly can put a life on hold. family caregivers are less likely to accelerate in their careers, often missing workdays were leaving the workforce altogether. we know this burden is overwhelmingly on women. some economists estimate that it's such a burden that's affected t the level of participation by women in the workforce. i know that from the range of legislation you mentioned this morning that there is no panacea
3:05 am
for this problem, but i think one answer that is important is a legislation that i joined with our congresswoman to provide paid family leave for the family act. for those to receive care outside of the home there's also obstacles in the medicare system on access to skilled nursing benefit. it's contingent upon the inpatient hospital stay. back in 2015 i offered a bill that became law in the act to provide notice so that patients would be unaware that they've been placed in the status of the very much need to move beyond that because it is a great financial burden when a patient is placed in observation. our colleague has an important access to medicare coverage act that would address this problem that i hope we can see adopted. a more modest measure related is
3:06 am
one that i filed with our colleague jason smith the home care flexibility act. it's designed to provide access for occupational therapists to conduct the initial home health assessment. as ms. brown's testimony indicates, there is more of a problem here than just the impact on seniors near the end of their life. i think particularly of those individuals who struggle with total and permanent disability there are shortcomings in the social security and medicare system in this regard. a person who maybe ha has to do with bol both way through the al process to acquire social security disability benefits and then is required to wait for five month before they get a dollar of the disability benefits in an amazing and inexplicable two years before they access any medicare
3:07 am
coverage. we need to correct that. there is no justification for that giant gap. and of course assuring health care, one of the most important steps to congress has taken is the affordable care act itself. i believe with regards to nursing homes, i recently saw a front-page story in the san antonio express about identifying them in or out area nursing homes with major deficiencies, questionable care. one of the things we've seen in emergency care is the increasing involvement of private equity which sometimes raises cost and is a major obstacle. what impact has it had in the nursing home area? >> i'm not completely sure on that answer. i'm happy to look for the record. the other issue that relates to
3:08 am
that is to examine the transparency of ownership of the nursing homes because there seems to be a growing issue about a lot of accountability issues we need to address. >> the investment has nothing to do with healthcare but has savaged the industry across the country. we are seeing that more and more they know the experience in the business anbusiness end of a see underlining. there was a case a couple of years ago when of the largest in the country that sold to a real estate trust. something like 7.4 billion then it turned around and sold the underlining property for 7.2 billion leaving about 99% of the assets gone and as a result some of the nursing homes went
3:09 am
on to other providers that were not capable of handling them. this was a multistate issue but we are seeing just one case. we are seeing over and over again it can be siphoned away from nursing homes and from care and it's devalued and sometimes even closing. >> of the recognize the gentleman from nebraska. >> thank you mr. chairman and all of the witnesses today. we were discussing very relevant issues and caring for our seniors i know that we want a lot of option. i want to reflect briefly on hospice care and salute to every worker in america for walking alongside families and difficult journeys and i really salute and respect all of hospice care providers for all that they do.
3:10 am
as we examine the issues and options, i appreciate we can share our ideas here that we are working on. i think a lot of comments and solutions are out there with legislation. qualified home care services in the expense of eligible to be covered by the health savings account i think that would be a good approach would help to keep them open as they do with the cosponsor to increase access to osteoporosis prevention and treatment by correcting the reinvestmenreimbursement.
3:11 am
these are common sense solutions and they can wring about an immediate positive impact. i think it is necessary to think a little bit outside of the box and come up with innovative solutions that can both improve outcomes for the seniors had also hoped to lower actual healthcare costs at the same time. i hope to reintroduce the hospitalization for seniors act. this bill would utilize telemedicine to reduce unnecessary transfers of patients. unfortunately during the nights and weekend, seniors in these facilities are transferred to the emergency room due to relatively minor illnesses simply because there is no qualified medical practitioner on-site to diagnose or treat the patient. this would reduce them by using telemedicine to connect the nursing home staff with remotely
3:12 am
located medical practitioners who can guide the staff in the diagnosis and treatment for minor issues or make the determination to transfer them to an emergency room in more complicated or urgent scenarios. reducing these unnecessary transfers both save money by preventing expensive emergency room visits and improve patient outcomes by preventing the unnecessary stress and trauma to an already vulnerable patients. certainly the courts are working with colleagues to work on these issues. it's been referenced already with the aging populations and many of our districts especially a district like mine out of 93 nebraska counties so much of the population is concentrated in three counties out of the 93 have so many counties in my district have that some are rural and others are remote. some are lucky to have access to
3:13 am
a hospital with one dr. so we need to look at the flexibility when and where we can and certainly telemedicine plays an important role in that. would any of you care to reflect on telemedicine and the role you see it playing in the topics we are discussing? doctor lynn? >> i think that it's a tremendous opportunity both in the ways you are talking about in emergency care and access to specialists and the kind of things that have happened out of mexico where specialists are worked in to support local doctors. but also in many areas we could have a nursing home and even in home directory services consider the model of pace. the program all-inclusive care of the elderly and dramatic reductions they have because they had 27, 24/7 care
3:14 am
around-the-clock overtime with the provisions of care plan. so they know if this person would resist going to the hospital and would prefer to have a diagnosis at home. and most of the population, not necessarily the land mass is suburban and it would be relatively easy to mobilize the kind of service. that requires continuity and care planning which we do not value in our care system at the correct time. is this a person getting to the end of close of -- close to the end of life and should be treated at home rather than undergoing the emergency room and being tried in and left alone and so on, or is this a person who just had a fall and needs to have an x-ray so they can get it at home? there's a lot of opportunity there that we have not used. >> of the call upon the gentleman from california, mr. thompson. >> thank you for having this
3:15 am
hearing today. ms. sanchez, thank you for the role that you've played in he pg this important matter to the forefront. and thanks to all the witnesses who are here. you've all done in a big job. and in particular, ms. brown, thank you. with the courageous storwhat a f dedication and love and commitment. sadly a story you shouldn't have to tell because you shouldn't have to have done that. but you are a very impressive young woman for the role that you've took. i'd like to talk a little bit about hospice. i've heard from hospice in my district a lot, but one problem that keeps coming up is workforce shortages. the labor shortages are challenged to all of healthcare as we know. provider shortages, caregiver shortages. hospice is for -- in rural parts
3:16 am
of my district i'm assuming that is the same across the country. i'd like to ask you can you talk a little bit about those workforce shortages and the effect of access to care and the quality of care? to >> thank you for the question, congressman thompson. indeed i think access is strained when the number of caregivers available to care for the population is shrinking and the population is growing. with hospice gets even worse because you don't only talk about the shortage of physicians and nurses and social workers and therapists, but the shortages of all of them. there's a couple things we can do. one involves training. a bill that was actually passed by the house would provide training on hospice and
3:17 am
palliative care and the other thing is taking a look at the pay that we provide some of these folks. it's difficult for hospice and many care providers to compete with a packaging plan where you can earn $20 an hour putting books in boxes when the far more arduous work of being a hospice aide is stacked up against it. we have to make some priorities in this society and i think prioritize caregivers, prioritize home health aides and others that provide the services as well as provide more training to physicians and nurses and social workers. >> i also hear the impact the cost of living has and it speaks directly to the issue of pay. i have some people who are driving 90 minutes both ways just to be able to provide hospice care and afford to live. i think you are spot on. >> that is especially in california and places like that.
3:18 am
>> do you have the same problems in the skilled nursing facilities that we have in hospice wax >> we see that there is more pressure on healthcare. we see that in nursing homes because they are historically incorporating the work. they are the most dangerous profession being a nurse aide. it's often a thankless job. salary is an organ plan some one can make the same amount of money working in a packaging plant then they can caring for a resident and then they are not allowed to care for the resident because there's so much pressure and it's such a bad environment that they will choose the other so it is a huge issue. >> thank you. i would like to talk about something else, another problem.
3:19 am
my district was recently devastated by a fire over the course of the last few years and as a result, we have had constituents have had their power shut off for days on end. i just heard from the hospice in my district for the cover had been shut off in the 30-degree weather it was so bad they had clients that had to go sometimes with medical equipment attached and tinterested in their car juo get warm. it's not just a california problem. i know florida had similar problems in their hurricanes. what sort of things then congress can we do to make hospice and any care facilities more resilient or prepare for natural disasters? >> thank you for the question. the organization is a foundation that provides support for some of these hospices when the disaster hits but i think it is clearly insufficient. when you look at disaster relief
3:20 am
fund is, they don't help hospices or healthcare providers actually deal with the consequences of the shut down. they don't buy the supplies they need to provide power during a shutdown. one thing we do need to look at his prioritizing support as we see disasters every month we see a different disaster of a different sort i think we need to prioritize the flow of the disaster relief to help the healthcare providers keep going. >> i clicked to talk with you off-line. >> i'd love it. that. >> with the recognize the gentleman from texas. >> thank you mr. chairman for having this hearing today. this issue is beginning to affect all of us. i have an 89-year-old mother and she is very appreciative of the home health care that she gets. i hear about the subject every afternoon when i go and visit
3:21 am
her. over the last couple of years, several of the post acute care sectors experienced the transition to a new payment system. cms has mostly chosen to wait for the data to become available from the new model before instituting behavioral assumptions and payment methodology. i believe home health providers are being treated differently. cms is instituting behavioral assumption cuts to the detriment of home health providers and seniors. the medicare beneficiaries want to receive medically necessary health care in their homes, but they no longer have the ability to do so with such a payment reduction. mr. chairman, with back i was asked that we took to consider
3:22 am
hr 2733, the home health care payment innovation act. she worked tirelessly on this bill to address the patient driven groupings model behavioral assumptions and the bill would require medicare to raise the adjustments only after home health behavioral change actually occurs and ensure the medicare budget. last i would like to ask the committee to consider hr 2073, a bill i cosponsored with congresswoman porter to extend the 7.5% threshold for the medical expense deduction. the medical expense deduction provides relief to families especially older americans and seniors to offset the cost of their health care expenses and give the certainty to the
3:23 am
families of something that this committee should take up as soon as possible. thank you mr. chairman and i would yield back. >> with the recognize the gentleman from hartford connecticut. >> thank you mr. chairman and i want to thank the panelists for their expert testimony. this is extraordinarily important and i commend the chairman for bringing this issue atheseissues to the forefront ai also would like to thank the ranking member brady who mentioned in his opening comment is a senior is no longer able to manage their own social security benefits, the social security administration would appoint a representative payee to help them. this program is an important part of the nation system and in 2018, this committee worked by partisanly to strengthen it. i commend the ranking member and it works fine proud to have participated in.
3:24 am
most family members. however if there is no family or friend available, then the social security administration will consider creditors such as nursing homes and assisted living facilities. because of the complex of interest, this is supposed to be a last resort. unfortunately, we heard testimony in prior hearings that some nursing homes require that they be made a resident payee even when they are available to serve as a payee. we've asked the social security administration to review how it selects this including the facilities. i think the ranking member brady for raising the issue of social security representative payee's and i look forward to continuing to work together to protect
3:25 am
vulnerable beneficiaries including when creditors such as nursing homes or that payee's and with that, mr. chairman, i will yield back. >> leslie recognize the gentleman from new york. >> thank you, mr. tremaine and thank you for doing this hearing today as well as hearing the comments from my colleagues about california about the first experience in for being a champion in this area in your work. as we talked numerous times to discuss the issue of hospice and palliative care and how that fits into the delivery of health care for seniors and folks as we face those years of advanced aging. what i wanted to focus on as a hospice and palliative care advocate and also a volunteer myself, a volunteer that spends time in hospice facilities and
3:26 am
sitting and standing with families and patients of hospice care maybe we can touch on something that i think gets lost in regards to hospice and palliative care and that is the failure to embrace it in regards to the honest conversation we need to have in america about end-of-life and facing those issues of death and dying in our community, and not in a negative way, but in a positive way and i would tell you firsthand given the experience i had from the day my mom was diagnosed with lymphoma to the day she passed, they provided care and comfort to allow her to enjoy those days in a very positive fashion in her own home and in her own bed. and so maybe if you could talk a little bit about how hospice and palliative care shouldn't be viewed in such sometimes a negative light, but the positive
3:27 am
in fact it has on the quality of life of patients receiving the care and how their lives are in proved by having the ability to control how they are going to exit this world and also enjoying family, loved ones, how they are going to spend time in a quality fashion as opposed to maybe eight lack of quality. can you offer any insight as to why you should be viewed in a very positive light as the care that it provides? >> thank you, congressman for your leadership around this and other legislation. i think there are two issues we are talking about here. one is structural and one is educational. the structural issue is when we talk to people we say we've got a great benefit for you that provides all the services and support the rest of medicare doesn't. you can get a nurse, social worker, chaplain. the catch is you have to give up
3:28 am
care to get it and when people hear that they say i'm not ready. my great aunt is in that situation. we should remove that barrier to remove the stigma. the other part is we end up having these conversations about what people's wishes are way too late. this is about choice comments about what kind of care folks want to get into so the right time to educate folks around hospice and advanced illness care is before they are in a position where they are in the advanced illness or require hospice and i think people are more open to having the conversation at that point. so i think removing the stigma and then removing some of the barriers that exist because of legislation would both help get people into hospice earlier. i think we should create a serious illness benefit precedes hospice so folks get some version of interdisciplinary service centers to say i want that, i want more of that and
3:29 am
that is what hospice will be. >> they looked at legislation i'm interested in pursuing. there were studies out when you qualify for medicare just having a conversation as you enroll in medicare about end-of-life hospice palliative care and without their. one i think it would go a long way to raise the awareness but also something like $2 billion a year to the american health-care system ihealthcaresystem is savt requirement in medicare enrollment to have a discussion. what do you want to do, you are sitting here healthy and vibra vibrant. is that assessment accurate and can you touch upon the savings? >> i can't speak to the savings but i can tell you they would be considerable. you are absolutely right. the right thing to do if you want people to have choice than some agency over the care they will get from anybody that gets onto medicare should have a
3:30 am
welcome to medicare physical. part of the conversation should be what are your wishes. you never know what's going to happen tomorrow. what kind of character you want to get? if you have that conversation when people are healthy and getting onto medicarecome into sort of normalizes the conversation so it doesn't happen later. >> my time is expired and i look forward to expanding the education across america. thank you. what do yo a recognize the gentn from oregon. >> this has been one of our more moving and encouraging hearing that we've had. i appreciate you putting a very human gaze on this. your leadership and being able to i think help us move this along. it's long overdue and i deeply appreciate it. ms. brown, you are proof of what doctor lynn said that if we don't get this right, we are
3:31 am
evaporating what you said exactly, this legacy evaporates because of the long-term care [inaudible] i am encouraged by hearing so many of my colleagues here on both sides talking about simple steps that can be taken. some of you are aware of the struggle that we had for the federal government to put a value on talking to patients and their families about what their needs were. we made some progress, but we have a long way to go. my hope is we will be able to boil down some of the specifics and continue that partisan dialogue but be able to not worry about solving everything at once both deal with specific steps that would make a difference for families,
3:32 am
caregivers, patients, and candidly that will help us in the long run to save taxpayer dollars. we pay so much on failure in terms of wasted money and wasted lives. doctor lynn, you've discussed the program for all-inclusive care for the elderly. it's been exciting for me to watch in my community, and it's one of those simple common sense approaches that really enables people to have a higher quality of life and be able to get more out of the resources. but i must say we have been focusing on one area of the program that we think there is in fact a problem because for middle and low income, medicaid or made an official gerry's, the
3:33 am
ex- says part d. premium costs can be unaffordable, $800 a month or more. i support allowing the just medicare only beneficiaries to have the choice of either using the pace program or stand-alone marketplace. mr. chairman, we have legislation focused on this to try to help this little adjustment. it would make such a difference in peoples lives. i understand that last year and this year the program for knitted a request to cms on the medicare only part the issue and i also understand they seem to have denied those requests into this year's letter of denial pointed to a statutory
3:34 am
prohibition. would you care to elaborate on that? >> they said it twice. the first time, the second time they said it was not. the issue is that a statute came after the pay statute and a statute requires the deductible. the statute terms on the placing of deductible so we proposed that the program be able to buy the marketplace today plan and do all the wraparound services. in the pace program that applied for the waiver, the premium would be $1,200 a month versus $50 a month for the beneficiary in a market-based plan and the wraparound services would add a couple hundred more to take the co-pays and deductibles. it seems to us it is within the statutory authority but we would
3:35 am
be happy to have a statute to fix this because at the present time effectively,
3:36 am
to serve as a big government program or patient. i think the chairman was talking about the deficiencies they have been working in these faciliti facilities. so i talked to mark, and i think
3:37 am
it is really good for all of us. how the people we are most concerned about are handling it and one thing i liked about this is a dear home and have a robust procedure where the actual people get the chance to interact and discuss where it is they think it's coming up short, so it's a customer satisfaction index they are looking for, not so much pleasing the government program but making sure they take care of the people that are there. all of you do this and have a great deal of background and depth of how we should handle it. especially you and listening to what you have to say. there was a bunch of older guys around and one gentleman one day i looked at him and i said you don't seem that you're okay today and he started crying.
3:38 am
he said i need 86 now. my wife has alzheimer's and i am her chief caregiver. i went to the store the other day and when i came home she wasn't there and i was frantic trying to find out where she had gone and finally one of the neighbors said she was walking down the street. we got her home. i said i'm sorry to hear that and he said you know what, i get so upset about this stuff. but you know what, people know that my wife is going through some thin things but they don'tw what i'm going through. and i think that is what it comes down to is how do we help those that are helping others. can any of you give us ideas because we keep looking at the government to give an answer of the people to come up with answers that the people we serve. if you can come and i know you have limited time to discuss these things. we have so much legislation out there and ideas to fund it but
3:39 am
just some ideas you can go through. >> we've done the analysis of how much can be pulled from the system and the various proven approaches that work. i sent substantial innovation we need to free erie pennsylvania to figure out how to provide really excellent care and they would do things that are striking i believe things like having home care entities work in a geographic area and things like work on culture change what you've described. what we need some examples that really pull us back. we have a tremendous amount of money going to this population. it's just going in all the wrong ways. i can get 100,000 but can't get supper. the fact that we develop a system that doesn't allow people
3:40 am
to make savings for their own future that doesn't mean they have to sink into poverty. we built the system around the idea. now that is the commonplace we need to redesign and we need a few years of substantial innovation that we specified by having trivial little things here but also to the more fundamental stuff that will get us into the 21st century without bankrupting and watching oval office by -- a whole lot of people die. to step forward and say we will
3:41 am
take that on. we can free them from a bunch of regulation. why can't a mother gets medicaid, we put the wall in place. everybody here tells their stories. weren't we lucky, the point is not to be lucky to get a fair deal in the country. there is no one-size-fits-all is basically what you are saying so when we allow the people who are serving to end the input, then we get a positive answer to it. i want to thank you for what you've done i recognize the gentleman from wisconsin. i thank you for your testimony today. thanks for teaming up. we're just scratching the surface on an overwhelmingly important issue right now and i also want to thank ms. sanchez
3:42 am
for her plaintiff focused and sharing her own personal testimony that shows how this impacts millions and millions every day and when 10,000 the time has run up. it's at our doorstep right now. another issue we haven't talked about much. i know my whole family has this on record. and even talking to them at an early age and just knowing what people are expecting with their own long-term health-care needs to go a long way. and i want to thank you for your organization's endorsement support of the access to hospice
3:43 am
act. it's a decision i've tried to introduci tried tointroduce mova bipartisan fashion to fix the anomaly in the reimbursement system and it would allow the federally qualified health centers to receive payment for a service and have an impact on the 24 million americans using these federally qualified health centers. as with the support of the committee we will be able to advance into working with you as we do. i want to thank you for the passion he brought to the testimony today. with my own parents were 90-years-old right now my dad was paying intdoubtless paying y for over 30 years and checking off the right boxes. now that he's in a care placement facility to make sure he qualifies for it and hasn't gone through the process is only a fraction of the overall cost. i want to ask you in the state
3:44 am
of the marketplace right now when it comes to long-term care policies, because it seems like it is failing. to sustain it because of the ever rising premiums and done as they get older the premiums go up and they are making these difficult decisions. do i still write a monthly check or that the policy lapse and it is hard to predict the long-term care. do you have any thoughts on a long-term care marketplace right now? >> outside of a very few arenas so they still have a decent shake that almost no one else does. it's the only huge risk we do not ensure and you cannot tell today. it so happens although it is pretty rare people have none.
3:45 am
those could be governmentally sponsored. they could be freestanding life insurance policies. it could be three days or 30 years. when i first started working in nursing home i picked up a person no one can save for that. we need to get that kind of risk into a pool so that the upfront risks most of us will face the
3:46 am
only way that it's going to work you mentioned in your opening statement the tax program that the state of washington has put forward and we are going to watch that with intense interest. as you know well it took a lot out of the affordable care act and we couldn't get the numbers to work actually. but do you still think that there is some hope for some way that we can try to work on this? >> i would like to think so and i've also like to think that it begins with coverage first. you need a way to start it slowly and there has to be much more consumer input into that of fellow and the lands and i would hope that we wer would do that.
3:47 am
>> i want to thank all the witnesses for being here. there's nothing i takthere is ne seriously than helping my constituents with a problem they may have. working with the federal government, working with healthcare. as i've told the members of the committee before, the number one problem i hear from the folks back home is access to health care. just last week we received a call from a hospital about a veteran who was dying. the hospital had been attempting to get them into hospice care about 3:30 p.m. on a friday afternoon. they permitted him to stay over the weekend and unfortunately monday morning, he died.
3:48 am
as you noted in your testimony the average length of stay is 18 days. with a timeline this short it is crucial they are fully staffed and able to trade every single patient otherwise patients like the gentleman i just mentioned will continue to die before they get access to care. while problems with the whole system or outside of the scope of the jurisdiction. in missouri and across the country they are facing crippling shortages of health care providers. as of september there were nearly 1.1 million of care and social service job openings.
3:49 am
these misguided proposals will cost billions of dollars, and sadly will have no impact on filling the gap between the unmet market need for more professional caregiving in liberal america. in the hospice industry alone, the current rates educating and training medical professionals in the palette of care will not be enough to ensure aging americans have quality care. current estimates show there will be no more than 1% growth in the palette of care hospice physician workforce in the next 20 years. and with increased by over 20%. the population is getting older. the baby boomers, my parents generation will all reach the age of 65 by 2030. the workforce demand for
3:50 am
high-quality care is only going to increase. what are you seeing in the workforce needs and how if you could advise the gap for the needs of the elderly with serious chronical illnesses and how is the problem specific to hospice. it is what the house passed and that provides better education and training but as you said it is a drop in the bucket. it's not enough. there are plenty of investments that are going to be inpatient settings and plenty of investments that go to hospitals and everything else that goes with it. there's very little investment in community training. from the settings people don't want to be to the community
3:51 am
where people want to be and want to die. it's incredibly acute and not being able to get hospice care is partially about not having enough folks to care for that. it's sometimes the product if we are not sure if they are ready. we don't want to get audited if we take that and then the government comes in later and says you shouldn't have taken that. we need to change that as well. the other pieces we need to actually provide a path for folks who are not ready for hospice but want to get some of that care and earlier benefits. the pin but i have on my lapel as the veterans program and i think it is something we are very proud of. it is something that we definitely want to improve and work on. >> thank you for your question.
3:52 am
>> we will now proceed based upon practice recognized. mr. pascrell is recognized. our witnesses have been pathetic. -- our witnesses have been terrific. your life story, your real stories come and thing you, congresswoman sanchez for your compelling story as well. thank you for helping. the population is growing tremendously. you will all agree to that. the number of americans age 65 and others projected to nearly double from 52 million to
3:53 am
95 million by 2060. and that 65 and older age group share of the total population when it will rise from 60% to 23%. it's critical to where we are going and it's a sustainable program. the gentleman has hit on a very important issue and i think that we should address it as to the priority of the funds. .. screaming there almost beginning to match each other. they can even higher depending on the loophole of care need it.
3:54 am
thank you for the work you do in the national as national coordinator of elder justice. we are looking for justice here partly. so you highlighted in your testimony and when i read before that that accurate data is key to informing consumers the quality of nursing homes through cns nursing home, compared website. how can cms improve data orders, and enforce the measures so consumers can make an educated decision on long-term care options. families are prone into the no go zone. they don't know where to go to collin. how can we be sure that the
3:55 am
equality is really accurate. >> make you i say, in response to that story that was given testimony in the senate about the woman his mother died in a fight start facility. cms very recently took a step to now place an icon on the website next to any facility that had a record of abuse and neglect. she could see that as a consumer before you place anyone and that put facility. that was seen as an important first step. but it's a race to.we are doing regular orders of the day use to get writing. you are missing the vault. >> we doing daily audits. consumer i'm not sure even during the quarterly period is to make limits school and college, you have to give a report on fire safety. and again of the buildings, can they get out of the dorms. we have federal legislation to that effect.
3:56 am
bipartisan legislation. how about the legislation to deal with this problem. >> and i believe in the course of the next few weeks that the legislation is evolving. an reauthorization originated in the senate come to this committee for review. and there are proposals the very topic about nursing on comparative how to improve it. how to deal with issues around auditing and look forward to working with the committee to see that we can continue get this promise possible language. on the behalf of the consumers. in 2016, all concluding this. the hospital readmission rate was 17 over 17 percent. there was for medicare patients. which is nearly twice as high as the rate for those private insurance. taken together, elder abuse costs $2.8 million per year. and medicare hospital costs
3:57 am
alone. so we not only have to have a sustainable system, regardless which part of the system you look at, must have a sustainable review of whether it is working and how it is working because i know of the abuse and many of these residences that we are talking about here. >> you time has expired. >> thank you. >> thank you. we now move to the gentleman from illinois. >> thank you very much madame chairman and i want to commend you representative for the roles that you played in to take place and i want to thank the chairman for calling it all of the witnesses, for participating with this today. i seriously believe, that you can manage your greatness of the society be measured, about how well it treats its old and how
3:58 am
it well it treats its young and how will it treats those who have difficulties. and caring for themselves. we've heard a great deal about the personal sacrifices of individuals like ms. brown caring for her mother. but unfortunately, many people are unprepared to become the caregivers we need due to their own circumstances or the inability to have resources to help. course caregivers may be family members, friends help and professionals and social workers members of the clergy, and provide care at home or by an institutional scotus. it comes to nonpaid assistance and support for people who cannot care for themselves, it
3:59 am
is estimated that 44 million people ages 18 and older are providing care for people with all kinds of health issues right in their own community. according to the family caregiver alliance, they reported that the value of this unpaid labor of course is estimated to be at least 306 million dollars annually. nearly double the combined cost of home healthcare. for 3 billion and nursing homes care, hundred and 15 billion. many analysts recorded the family members and loved ones will provide care for individuals with chronic or disabling conditions are themselves at risk of physical and mental health disorders.
4:00 am
and of course one way to help aging americans is to ensure workers that they have access to paid leave or caregivers. is it too often hard-working americans supports to make false choice. they have to choose between family and work. we all know that taking care of a loved one and facing a serious health condition has brought a choice. it is the responsibility. you do what you have to do. in my congressional district, is one of the highest percentages of children being cared for by their grandparents while it followed closely by two other chicago area districts. and within the african-american community extended family, like aunties and cousins as well as friends. they are often kinship caregivers in addition to grandparents. that is why we held hearings on the needs are paid family and
4:01 am
medical leave both in my subcommittee and the subcommittee on workmen and family support and then in the full committee. doctor lynn, we do talk about lack of flexibility and employers give to family caregivers, and the way that offers them to take unpaid leave and often retire early, i was reminded of one of my constituents who testified at her subcommittee hearing. she is caring for her grandsons. she is working and she had to give up a good job that paid better because it didn't provide enough flexibility to accommodate caregiving. and she worries everyday about her own health and how her family would get by and she couldn't work. doctor lynn, how does this kind of access help relieve some of
4:02 am
the problems with leave. >> we certainly need to find ways to fight leave caregivers who need provide ways to provide them with things like medical and care insurance and social security while they're working full time taking care of somebody. caregivers get a really short shift here. and the things that you are talking about, and be on the table put together package makes work. we have it. caregivers are invisible in our systems. the damage from work and go into poverty themselves and nobody notices or cares. and the reunions, speak on behalf of all of us who will be in heaven or are now caregivers. >> thank you very much and i yield back. >> thank you mr. chairman and i want to also say the witnesses today you valuable testimony and sharing your stories and is the
4:03 am
great opportunity to raise awareness as most of us know the month of november is alzheimer awareness month and lastly when i was back in my district, i get together in bloomington illinois with a group from the illinois chapter of the illinois alzheimer's association is around the table, we had a really robust discussion with caregivers and doctors and family members on this issue and one of the issues that was highlighted for me in the discussion was a hard-working dedication and sacrifice it takes to be a caregiver. during, when we got to the specifics in a roundtable discussion one of the overarching issues that came up was the lack of uniform diagnosis tool and the lack of patient education on tools we currently have in medicare help craft the comprehensive and coordinated treatment plan for both patient and caregiver. one tool we already have
4:04 am
medicare as many of us now is the annual wellness visit and as a percentage of medicare population with alzheimer's and dementia continues to increase, the annual wellness visit allows for a physician to work with medicare and fishery to develop a personalized prevention plan for future medical issues. including all summers or dementia. one aspect of the annual wellness visit is the assessment of cognitive impairment in assessing cognitive impairment early is especially critical in this way is proud to cosponsor the change act resplendent sanchez earlier in the cosmos, obviously the change act will help maximize the value of the medicare annual wellness visit to catch cognitive impairment and signs of alzheimer's early. among other provisions, arbel requires testing for cognitive impairment during the wellness visit and it is progression of future visits to ensure follow-up with more advanced alzheimer's and dementia screenings and impairment
4:05 am
worsens. mr. adie, and thank you for your testimony as you likely know medicare began reimbursing providers for comprehensive care and finding.was for individuals with cognitive impairment back in 2017, this allows newly diagnosed individuals in the caregivers to learn about medical and nonmedical treatments clinical trials, and support services available in their community. unfortunately utilization rate remains low. and we heard that last week. like the care planning benefit the annual wellness visit is also underutilized among medicare beneficiaries. question for you is how do you say that we can continue increase the public news awareness of these services and how can they be enhanced to provide the most valuable to the medicare population. i would also add in a district like mine, and 19 counties in his world district, hasn't heard a lot about how do we get the word out and how we communicate in an eight minute rural areas.
4:06 am
thank you. >> thank you for that question. for everything he said, couldn't agree more. the it is critical for early detection. his misunderstanding about how important that is. what can be done once a diagnosis takes place. it's all to let often lacking. so we have focus so much of our attention on making sure that this care plan benefit that you reference, accurately, is that people are aware of and especially commission and the make the connections that we know could be made to evidence-based and very effective interventions, such as training for caregivers. in connection between resources that already exist. we see this as a linchpin moment in the care of everybody with dementia and other caregivers. and that is how advertising much the improving overall for all direct because it makes that link as you pointed out, early detection diagnosis and the conversation with a healthcare
4:07 am
provider, and services that do exist today. it should be further strengthened they are there. >> thank you for those comments. >> audit take those moment for myself. elder care is an issue that i have long been passionate about. and working with the past liberal most of the department of health and human services to address patient safety issues in long-term care, ranking member brady and i wrote a letter regarding the failures identified in the recent report. supplementing, number of letters asking for services to take those more aggressive action in examining over subscribing anti- sub psychotics for people with alzheimer's. we know they are still being prescribed excessively. that went out objection, it's time to submit these to the record. and recognize the lady of california, missed changes to the choir. >> thank you and guitar witnesses thank you so much for your wonderful testimony.
4:08 am
running on my remarks, it would improve the lives of patients and caregivers, and that is why is mr. lahood mentioned, i am proud to have introduced along with him, the concentrating on high-value also restates to get in and are more commonly referred to as the change act. we like our acronyms here. this bill is the companion bill in the senate and we give providers the tools that they need to detect and diagnose alzheimer's in its early stages and we know that alzheimer's often goes on detected for many years and it is typically not detected until very late. and again we also know that communities of color and women face higher risks of for the disease and barriers to treatment and research. so early detection seems to me is one of the areas where we can focus to allow patients to be
4:09 am
referred for additional testing and allow them to be referred for community-based support services and potential clinical trials as well. i'm going to shift a little bit and talk a little bit more about caregivers. because caregivers do an incredible job on very trying circumstances. but can you tell us what are some of the unique needs that are faced by caregivers of individuals who live with alzheimer's and dementia related diseases. and at what more needs to be done to try and help the population of caregivers. >> thank you for the question i say some of the unique needs centered around the evolving nature of the disease. it may feel that at the beginning for somebody is dealing with this disease that they in a sense, have it down. they can handle what is going on and how the disease is unfolding. you may know intellectually that these will change in the mail of throat. in this way is so important to
4:10 am
have training or caregivers in particular that they can identify what is likely to happen how that would necessitate changes in care. they know what services are available. perhaps i hear the most often about the challenges with caring for people with dementia are interpreting behaviors especially as it gets more difficult. is unsettling and difficult the lease you often i see in a nursing home before it would otherwise be necessary if you have that person centered approach. you understand what may be driving those behaviors. and how they can be best dealt with and nonmedical ways. to make thank you. another piece of legislation i am proud to cosponsor chemical colic on this. as the credit for caring act. it would provide much-needed stacked credit for family caregivers and caregivers face many missed opportunities because of the responsibility running support and her bill tries to relive just a little
4:11 am
bit of that burden about financial burdens. ms. brown. i really can't thank you enough for sharing your very powerful story. and while today's hearing focuses on older caregivers. caregivers need our attention and support. i'm interesting hearing from you talk a little bit about possibly having to leave the study of medicine because of the responsibility of your caregiving burden. i want you to focus a little bit on one of the sum of the missed opportunities that you have experienced as a result of the responsibility of being a caregiver for her mother. >> thank you for that question. so yes, so my missed opportunities include educational goals, for instance, high school wearing that i was not going to graduate. because i was working very hard also the opportunity of being a young person.
4:12 am
i quit the cross-country team i skipped prom i did not spend time with friends growing up and i do thank that is a long-lasting impact and it's unfair for young adult and even the child and teen caregivers have suffer and beat just being an adolescent. that in addition to the educational opportunities are the most striking sacrifices that i made. with has missed odd educational opportunities would you see that as the impacted your future financial opportunities as well. >> in some ways. cited take out student loans to payment my mother news mortgage. to get up more than i need to. i do have concerns about my future financial stability as a result. i am hopeful that a complete metta- school school this year and become a dr. and be able to carve out a financial pass to myself.
4:13 am
but that is a huge barrier and something that i constantly worry about. >> again thank you so much for coming to share your story with us and i yield back. >> thank you mr. chairman. and i want to thank oliver witnesses for joining us today and in particular, ms. brown. thank you so much for sharing your story. and my state of washington, we passed a new public benefit for long-term services and support. it is called long-term care trust act. i believe we are the first state in the country to do so. so washington residents go contribute to a new payroll stacked in return, by 2025, washington residents will receive support services. actuaries estimate the new washington state benefit will save the state medical program $4 billion by 2529 oh states like hawaii health anya also in planning stages to create a similar benefit. doctor lynn, you talk about how
4:14 am
the federal government can build on these state efforts to provide much-needed long-term services and supports medicare beneficiaries. >> the states are clearly on the gun and the cost of medicaid is eating their budgets. and some are doing very creative things. washington state has done we said but also has a very vibrant analytic capability growing in most states do not have. their innovation going on in minnesota to try to put some costs into mid-cap medicare advantage plans. hawaii has a proposal and implemented an endeavor to support caregivers and we need to encourage the states to do these things that we also need to harvest and drop them. so that there are to be a way to interface with the source of things at the federal loophole. as we get more federal
4:15 am
involvement. not every state can do washington state hasn't or may be inclined to. some will and some will do very creative things. i say it would be very good if the cu mmi for example offered to recruit is states that are wheeling to have some communities in those states really build the care system of the future. that would make the business requirements that you are speaking up and then we would have the really vibrant laboratories would teach us and we would be able to save, here's what we should go to. people were in the countries is being done right. we should go there. there are places in other countries that no one believes is of the countries. we need to build our own models and then celebrate them. in washington state, they've done this much. we need to really nail a group and hhs as the responsibility to
4:16 am
harvest the insights and to generate the energy to try much more aggressive things and we really only have a short time, before we have so many people in need. >> you brought up the legislation that in your opening test testimony, do you have any feedback. >> did a lot of work, i was in the washington recently speaking to their association it will have a brawl in this program going forward as well. there's a poll done by a.r. pretty. with in conjunction with this legislation. eighteen to 34, 83 percent of support of the concept of long tear care process. which demonstrates intergenerational attractiveness if you will be liable long-term care plan weathers in the state loophole or beyond. i say the other part that support about what you are doing is you are a have some estimates of >> savings will accumulate to
4:17 am
medicaid. as a the kind of data that the countries yet. because we can accomplish savings long-term services and support, against the medicare medicaid program, and started realizing the savings and investing more in the long-term services support, i say would be better off. >> and you kind of alluded to the next question that i as, programs like this, what is the impact on medicare. the fema nonmedical services and support that are potentially being covered through program like washington state. >> is limited to long-term benefits separated for medicare and medicare will benefit the some sort of thing that people get paid, they won't be in emergency room so often. they get bed baths come support that is essential to people doing well so medicare will
4:18 am
benefit. we need to estimate them and we need to be, when medicare says are due until the cost of care, is absolutely maddening because they never share the bed cost. in the family is taking on the chin. so we need to start accounting for the total cost of figuring out how to make this a viable arrangement for the whole society. to make the ideal back. >> thank you mr. chairman. you know this is one way personal fixations, the number of times i get teased by the chairman because it's one of few times to speak that went out chart. [laughter] 11 my charts. but this is actual, and thank you for being here. but this is the big deal but it's even bigger if this is also retirement security what happens near the end of life everything
4:19 am
states like arizona the try very hard in what we like to refer to as leaving wills and advance directives. those things how they fit into it into the conversation and mm i dual eligible populations but i want to go first on something and see if there is optimism. in fact we have baby boomers and were about halfway through them turning 65 and we talk about national debt, isn't comfortable politically first to tell the truth but is substantially different buyer demographics. there are some numbers, three quarters what we look at the national growth over the next 30 years. it substantially benefits the earned and promised from baby boomers. four also not the only country
4:20 am
to be going through something like this in the store i'm going to ask for some bit of optimism and creativity. some articles here we've been collecting for this hearing in one of the wall street journal news recently the baby boomers would prefer to stay home. technology that japan is adopting. to be able to provide services to seniors to be able to stay at home. some concepts of creativity with bright cherry meals on wheels is coming to the house they should also be dropping off the update of your oxygen tank and they can also take someone to the medical visit and the concept of consolidation of the data that is used for outreach to our seniors do choose to stay home. so anyone on the panel, actually sees some adoption for their beat technology or consolidation of these community researches resources that provide you
4:21 am
optimistic news. >> there is lots of reasons for optimism because there are many technology entities many startups coming into the business and want to go into the asian market in a difference going to the point about this is case, the business model that is really where the excitement rest because they understand the market of what is involved in aging services and programs, in which you can do in the private sector and technology loophole, there is cause for optimism. knowing our organizations doing this on a regular basis. >> can you be really more specific on do you see let's go to doctor lynn, do you see anything specific in your optimism. >> yes, the startups. people are beginning to take notice. maybe in time, the kind of things that you are talking about, yes we need to develop the robots that japan is
4:22 am
developing and we need to develop the lives of service deliveries that are much more efficient. but we need to focus to getting it done so that we do it in time. singapore working on it. >> i am having way in. i say the democratic graphics are some ways, are going to drive us to be more creative and more innovative. we have less her name to go around. to be smarter about how we spend it. and the is that we are spinning a lot of her name on get sick, get broken, here and we have to ship some of that to having caregivers and providing support in the community. i'm encouraged by amazon getting into the space of providing services and supports to their employees. systolic going to be the government that provides some of this support, it's also going to be private industry and says, you know it, our employees are spinning way is it too much time away from the desk dealing with these issues and we have to
4:23 am
provide them some sort support so they could be more productive. >> news chairman and committee members, do you remember a couple of weeks ago punishing the board of health dispenser that was to make sure that someone maybe at home, may have some issues, is taking the right combinations the right time. i actually found an additional study of the billions of people in the number of deaths was stunning because individuals don't take where are taking properly their pharmaceuticals. >> at simple machine, it's a pill dispenser that at certain times if you don't take it, it provides the family are and family members notification. that's only one tiny little cog in the wheel. this is incredibly human and use all the stories of what is happening in states like maine but can't find enough workers and their nursing facilities in
4:24 am
the shutting down these facilities because they don't have enough labor. that's our demographic. can we as a committee be wheeling to let some of this bring in some examples of those technologies. there's only a small part of the solution but it might be a fascinating. it's the mac anderson. i am happy to entertain. >> yield back. >> yes, this topic is so important to be. my mother-in-law was once a vibrant person happy to see us and in which we've god into her late '80s though, she developed dementia. after she would ask questions repeatedly not remembering that we had answered it only moments before. when she stopped smiling as he came and as her mind became a fog and finally she stopped recognizing us, her children. she since passed away but i see that even if your parents don't
4:25 am
recognize you, they deserve quality care. and that's why a family leave is so important. so i like to address this to mse of the only developed countries in the world that went out paid family leave. we do have family leave in the u.s. but it's not paid meaning that most people cannot afford to take off time from work. in my state of california does have paid family leave and is headed for the last 15 years and it's worked well. but that went out paid family leave, so many are lift in the lurch and they feel relief can help women stay in the workforce can lead to more economic the older women in retirement and lead to better health outcomes for children ill and injured adults and older visuals require caregiving support. so we do have this bill called
4:26 am
the family act which was introduced by congress member rose delauro just hundred and 99 cosponsors and more than 650 support and this bill and would provide up to 12 weeks of partial income we have to take time off work helping those with serious health physicians like your own or the birth of adoption of a child work for the caring for family member. so my question ms. brown and doctor lynn, do you say the family act would be a useful tool in helping family caregivers might care to the loved ones with conditions like dementia and alzheimer's rms. sprout. >> absolutely. given the question and i am happy to hear about this act. i do say that especially for young women who are at risk of losing after 20 percent of the lifetime earnings by leaving the workforce to care for a family member, this act would be
4:27 am
instrumental in helping these caregivers stay in their jobs than to continue to have lifetime earnings. i do say that no one can predict a loved one's course and caregiving is lifelong. so do say is very important that in every stage in life employees and especially women are supported in being caregivers and loved ones. >> he sends a small piece of what we need to do. and yes of course we do need to do this. it is amazing how difficult, i would.out that it doesn't helpless people. it wouldn't help you. because you were working we do are drone into it. it doesn't help small employers and the self-employed small businesses. and is only partial pay for 12 weeks. you caregiving is unawares. but it's helpful that the very least, there has brought in the community cares. and then we are beginning to
4:28 am
take notice what is going on. ciesla news do that. but as a springboard for bigger things. >> absolutely. [applause] at doctor manges see the numerous violations at nursing homes, there's a database and found that one facility in my district failed to loot use clean kitchen items to serve patients and another failed to follow physician direction when giving patients their medication and of course that is a threat to patients walking and yet another facility failed to refer a patient to the distance so he was unable to get his dodgers headed as a result the patient wasn't able to eat his food and began rapidly losing weight. what can congress and cms do to strengthen minimum standards to keep these patients healthy and safe. >> say of that question because there's so much that can be done. this affects people who are in a
4:29 am
nursing home for long-term care as well as for short-term rehab. it really does impact everyone. most importantly as i mentioned in my testimony we have really strong standards based upon the reform. at least for now. the problem is that those standards are not enforced. so the states, simply contract fees of cms in terms of enforcement, the cms there is no quality insurance. pretty much at all. to make sure the state is doing a good job. so what we can do is congress and certainly cms, is to make the state do a better job there actually regional offices at cms are in the country is pretty much sole brawl is to make sure the states are doing what we pay them to do which is protect our presidents. and they just undo it. thank you. stuart recognize. >> thank you for our panel here today. i could give congressional
4:30 am
honors. i would honor every facility every federally vilified health clinics, that serves the people of this country. i can't see enough about those services in my district. unsung heroes for sure. workforce issues, lack of tools of pools of people to hire and train in those kinds of things but i just want to thank all of you for being here and representing those groups. i do believe that preserving medicare is the priority and i do believe that we have to honor our promises to the american people and ensure that those that have worked their entire lives to earn those benefits are able to utilizes programs during their retirement years. it is also important that we strengthen those programs so that they are made available to future generations. i've been working with my colleagues and bipartisan solutions as well. to support older americans in the communities across this country and help them lead
4:31 am
healthy and independent lives. some of these bills that i've worked on we really talked about heard about the rural access thoughts act, which would ensure patients of rural communities to see care from their local primary care provider and the home care for seniors act which would help seniors across access the care they need, to allow them to use hsa for home healthcare and the beneficiary enrollment notification eligibility supplication act which would simplify the medicare part b enrollment process and prevent lifetime late enrollment penalties in the improving helper alzheimer's act is below the hope for alzheimer's act by requiring the department of health and human services to inform healthcare providers about care plantings and benefits available through medicare. and hr 2693 bill that would help medicare beneficiaries by updating reimbursements for exams that are used in identifying and training osteoporosis and at-risk
4:32 am
seniors. cms administrator, on finalizing the rule for the programs for all-inclusive fear care for the elderly or the pay program. which gives more flexibility for these organizations enter disciplinary teams and allows providers to offer services in place of primary care physicians and i do look forward to continuing to work with my colleagues on initiatives to lower costs and to improve access to care and services to more seniors and can enjoy it quality of life. thank you for joining us here and i appreciate listening to your testimony as mentioned, rural access to hospice act which i helped introduce with my colleague, can you explain to the committee the statue to barrier that currently prevents hospice patients for seeing their attending physicians that are federally qualified health center and how they hindered the
4:33 am
patient's quality of life while at hospice. >> thank you congresswoman relationship but on this. folks who get their primary care to a rule of clinic or a federally qualified health center are forced to make really hard decision. if a dr. and can see with a rural health clinic and stay with us for a federally qualified health center or choose hospice, which can't keep with the dr. and hospice at the same time. which is insane. it is a bit like the choice we make folks go through and choosing hospice to begin with. do i want hospice or do i want curative care also. when this bill would do is remove that barrier. you keep her dr. on that dr. can be attending physician hospice which is the great step forward. thank you for that. >> doctor len, i appreciate it. i just want to thank you for your work like you i'm a huge fan of the pay program and especially after visiting a facility in my district last year, realizing though that a lot of my colleagues actually had this in their district pre-
4:34 am
case claimed to have the innovative way they provide services and care to seniors at with complex health care needs number one. and you have any recommendation on how we can expand this kind of care across the country. >> smurf for a set price, the provide everything except the help person may need. the people who aren't disabled enough to be in a nursing home. but there is a very disabled population record in keeping people in the home and support supported, is remarkable. almost no one leaves was there and news in-state. the bar to medicare only people for reasons we talked about before. part b, as a bizarre relation this requiring that you buy the pace part d plan if you medicare only person sees is going from roughly 52 over thousand dollars month. nobody will do that. we need six times that. we need to probably allow there to be some paid services ahead of nursing home eligibility.
4:35 am
and of course they vary by states. many people need, the comprehensive service for maybe six weeks after a hospitalization. >> that got you out there. thank you so much i appreciated my yield back my time. >> that went out objection, when first included statement into the record i note, the root representative has questions the will submit in writing. >> thank you so much. thank you for your patience. this is been a very long morning. i just want to see to ms. brown, please don't pop out of medical school. animals prepare, and will contribute to yuko finley page, i'm almost ready to volunteer one of our colleagues in a couple of them from colorado to try to figure out help the lutherans the catholics, call
4:36 am
the jews, all of them. the naacp, everybody. to find people to help you do it. your mom would not be pleased if you dropped out of medical school. i'm sure. as a grandmother, great-grandmother that i am speaking for her. no thank all of you professionals for being here today i guess, i really say you all really pointed out that there is no way the government of the people can afford long-term care at the uptake of long-term care insurance that's not meant something of the majority of the population is taken on to the extent that it is going to fit creates a social problem. i am from wisconsin. and prolonged periods of time, wisconsin had the largest number of people who were institutionalized and not being
4:37 am
able to stay at home. so couple of things, i guess i would love to see addressed. personal, let's talk a little bit more about the proposed of cutting medicaid that this administration is proposing in my state and it would mean $21 per day per person and cutting in care. space switch that would complicate the shortage of workers and the lack of paperworkers and what we ought to do with regard to that. and i guess the next thing i would love for you guys to weigh in. i have an earned income stacked credit for proposal that would actually provide the earned income stacked credit to caregivers. to sort of meet some of the expenses to people who actually can keep their loved ones at home. so would you please lay in it. thank you.
4:38 am
>> medicaid payment and most days is marginal and any reduction means that you are not going to have the workers that you need. i was recently in a city in ohio that has 250 people already assessed and need in-home care and they cannot fill that need because they can't hire other people. workforces was out there. at 1180 an hour. the medicaid reimbursement rate makes it impossible for an agency to provide more than 1180 an hour. you court started between a rock and our space. this 250 people are just waiting to calamity and to get them in the hospital so then get them into a nursing home on medicaid rather than out. which is disastrous. it's designed by the devil. so yes we really must watch for the cuts in medicaid we have to look for ways in which people who are working the front line
4:39 am
aides get leaving wage. your issue on the stacked credits for caregiver again is the small step in the right direction and sort of like the previous question about having something the family leave payment and is the small step in the right direction and acknowledges the importance but it also will not really help long-term situations like misprint situation. which is what has been campus standard remember the average person just look around the room, the average person will have two years of self-care disability requiring someone else's help all the time every day. and if you don't happen to have six or seven brothers and sisters or a spouse is able to take care of you you are in a tough spot. and so we need the small steps and we need to do those and do them. you also need to address long-term issues. >> if i may just add to that, i
4:40 am
just like to speak to the idea of having that stacked credit for caregivers. i say that's a step in the right direction but i do say it doesn't solve the greater issue because that only puts more burden on caregivers to do an already impossible task. i say it would be helpful down the line, i say what we need is more support and more services to be able to hire paid professionals to care for her luck that caregivers can have freedom and financial stability going forward. thank you. >> thank you mr. chairman. great colleague from the state of wisconsin. joy effort with ms. brown anyway the city of philadelphia brotherly love and sisterly affections. our joy and the way i can be of help. when i'm asking that question misprint, would you like to see
4:41 am
congress do to address this issue if you have a chance to tell us what would you like to see us do to address this issue. >> thank you for that question. so the mission and my testimony, i say that we need to take a few steps going forward to the first is we need to address. there many families that are falling through the cracks because they are middle-aged and middle income and not qualifying for medicaid and medicare or social security disability insurance and i say we can start by expanding medicaid benefits so that disabilities are receiving the disk care that they need. we can do that by changing the cutouts that we have so that reflects the cost of care because no one should have to spend more than their income and have the children go into debt and miss school and not have a future just meet basic needs. i also do say that we have a greater investment home and community free services and families like mine and many seniors is well-deserved to live
4:42 am
in homes and have a happy and healthy life there i do say that given the cost of home and community services specifically home care through agencies, less than a nursing home so i do say that it could be a very safe and more affordable option going forward. and of course i say that greater support for caregivers overall, so that the family and medical leave act, giving paid time off involves pretty haps universities and workplaces the additional siphons to caregivers who might be sacrificing a lot of their financial stability and earnings to help their family members. thank you. >> doctor len, one of the most pressing issues i can say of when it comes to healthcare is the issue of inequality in terms of access and treatment. my district in philadelphia is the poverty rate of 20 percent. poverty is something that tends
4:43 am
to affect people throughout the course of their lifetime. also because of lack of opportunity and resources. like healthy food good schools and for affordable housing. well-paying jobs. when in a world in the zip code, can be a strong factor in determining your life expectancy. this is especially true as we look at the aging population. he faced difficulty finding care and affordable housing and home delivery foods. they depend on limited retirement savings and possibly cannot physically or mentally financially afford to live by themselves as they get older. actually, how can we work to make sure all will read the backgrounds of codes, can excess of quality of the sleep. >> the huge and growing gap of income for all disadvantage groups which adds up over a lifetime. ms. miss brown will have to pay
4:44 am
off all the stats. so she will start way behind the video comes out that went out the depths. and the average black head of household average at retirement, has one seventh of with the average white head of household has in retirement. because of this advantage has accumulated over a lifetime. we really need to be attentive to this inequity. at the present time, i medical care and long-term care, very poor and the safety net of medicaid, is the people just above medicaid that are really put in a bad spot. some states have developed ways in which home and community-based services can be provided with a partial payment by the persons. both your income is the little is it too high as her mother news is, she might've been asked to pay half of that income and that the rest be picked up by medicaid. most states just have a lapse. if you make 1 dollar more than
4:45 am
what the medicaid eligibility is. the only way medicaid will help is to move into a nursing home. would buy all of your income is compensated except for maybe $6 month. that is really a cruel choice. to go into a nursing home when you are 34 years old and have no income beyond little bit and her name. until you die. so people try very hard to resist that. we need to have a sort of scale sliding scale sort of approaches. and fair equity during lifetime. in fact, we have to have a vibrant economy to support an aging population. so the fact that we don't invest in children, actually ends up crippling our ability to support the people in your community. we need to be incarcerated, nearly half of black young men. we really need to be investing in children.
4:46 am
>> thank you a recognized gentleman from texas. >> thank you mr. chairman, and thanks for holding the hearing, is very important to everybody up there. thank you to the panelists for your insights and your commitment to our aging population and our fellow senior americans. but i've got a tremendous number of seniors in my district in west texas and we have some unique challenges being in a majority rule region of texas and i'm listening and learning i got a lot to learn quite quickly on the subject and on candor but i just returned from my last work weekend i it's been some time in a nursing facility called over spring and i'm reminded what a treasure our seniors are. i feel like often we push them out of sight out of mind and
4:47 am
they are a part of the forgotten community in this country. they have so much to offer. i love that place happier and in a better state of mind just having been around them. there was a lady who was holding a hymnal with one hand because shattering it so close to read it and was playing the piano with the other into play in a song that hymnal and we sang together we prayed together and there is just the special something about our seniors. we need to honor them. that is the bottom line and for me, i would honor them. this is squarely in the mission of the federal government in the sense that we need to provide for the general welfare of the public. this is the public good. and it is the right thing to do. another question question is how do we do it right. because these programs are not
4:48 am
sustainable and we talk about medicare trust funds in social security trust funds and wait look at the total ecosystem and safety nets for seniors if they're not sustainable we all know that. but at the same time neither is the physical condition for this great country and 23 in debt and i know you guys care about the next generation of seniors and americans not just our seniors right. so we have to, we have to do and problem while not breaking the back of this country and putting more deferred pet taxes. because that's with a $23 trillion is essay deferred stacked. someone is going to pay it. we may not, our children are and i move into one hearing we just had children and grandchildren. other where you are. staying please, please leave me the same freedoms and opportunities you guys had. please. it is just so easy to fix
4:49 am
problems is easy to find the ways to fix problems that went out consideration for the means or how to do it. and i know that's our challenge not necessarily something with su to consider what i want to put that out there because we don't talk about it enough. that is the biggest challenge. what trade-offs. and i'd love to address that. >> please. your preaching appear. >> for small hospice is one of those places that actually sort of pulled provides some that support and dignity and it provides chaplain services and i it is one of the problem is at the very end and you have to give something up in order to get it. two examples for my own life, in terms of folks that i have experienced herewith, the dimension of my testimony, my great aunt who still live in is
4:50 am
just about her name, uses 911 as her primary care system right. so when we talk about what we can pay for what we can't pay for the problem is with the scotus quo, somebody like ruby, every week calls 911 and goes in the hospital every week and medicare pays for that. ruby needs a touch, she needs a conversation or sport, forget it. she doesn't get it. and the other thing is the other woman i mentioned, my great aunt grace who died at 95, she declined and declining decline, shannon, for years and years. so there is really nothing in this country who helps to prevent that decline. when she fell down the stairs, and ended up in the hospital and then in the nursing home, all of this covered so there you go again, it's about the priorities we make is the country and make reactive when something goes wrong and we put people together once they are broken. we don't actually make those investments much earlier than that. to make i say we can argue, the same with respect to leveraging
4:51 am
technology. on the front it but i don't have any more time. i look forward to working with you individually to learn more and to help create a more sustainable safety net for seniors. >> thank you, recognizes gentleman from virginia. >> mr. me thank you very much and thank all of you just for what you do everyday. not just being in here. i mentioned earlier than when we were meeting the back of my sister developed early derivative and the expense the family was exported. we were able to afford imagine if you did have successful family business i ever be able to afford. also, am thrilled to storage learn from the merced river that the economic reform is learning how to focus on alzheimer's. as a major step forward leaders of the world will have 60 some presidents of companies therefore that.
4:52 am
and esther and eight on thank you because my mother my father my sister all died while all on hospice care which made an enormous difference for us. i thank you. and the say that i was fascinated to learn is we struggle struggle the democrats and republicans of the issues of the debt. we all know that you cannot make any progress on it by just looking at the defense budget or non-defense discretionary that is sister cute security medicare and medicaid. john larson has evidently thoughtful sissy. 2100 bill which i hope we will invest this year. maybe next which will solve one third of that medicare medicaid social security leg. with the notion if we can successfully address dementia and long-term care, that could make a real debt in the medicare and medicaid spending which is pretty exciting for us. thank you. . . .
4:53 am
what are the other creative ways to hold the costs themselves down, and is keeping people in their home at least a subset of that? >> on the second part of that, they will end up being a more cost-effective way of doing business. i think the issue is having more on the part of the contributors
4:54 am
and it isn't all about what bankrupt individual plan. the more attractive the policy is to a consumer, the more likely they are to take it up and when people come into the program, theoretically you can't reject all these things. it has to do with more people recognizing the need to purchase long-term care insurance but it's the responsibility of the entrance to the product more of a response to what the consumers want. it covered a lot of things including assisted living and care coordination. that's got to be the way the market works as well for what is important to an individual to make them want to make that investment and that is where we have to go forward.
4:55 am
they really should be able to be done in a neighborly way and not have to be paid for. there is a period of time where they need help getting the groceries or repairing a lightbulb. things like that fall on someone to have to pay to do that. we are working on a national volunteer care core that really should be worked out. we should have most communities during the part of the works of the personal care is the only thing that has to be paid for. >> july of this year the trump administration reversed the protection for aging seniors transportation agreements and
4:56 am
it's almost impossible for the residents are the decision-makers before the dispute. they set a significant evidence of a deleterious impact on the quality of care for patients. i'm out of time but i want to make a clear point this is policy moving in the wrong direction. let me recognize the gentleman from illinois. i want to thank the witnesses for joining today for sharing your perspective and experience and expertise and in particular ms. brown for the bravery, perseverance and a courage. you described how taxing and time-consuming caring for a family member can be. on a personal level being also
4:57 am
from denver, your colorado roots and aspirations are inspiring. whatever it takes, don't quit. the impact of the story is not unique. so many people share the circumstance. it's common with children and great grandchildren of parent going through difficult circumstancecircumstances left e their loved ones get the care they need and deserve. and this is a looming crisis we are at the plan point when an ee generation is just beginning to hit the peak of their demand in the need for care which as we talked about today an not enough caregivers to provide that care. it means the situation you described is increasingly going to become the norm, not the exception unless we support some
4:58 am
of that may come from the community that much of it is allowing people to access care without having to give up their lives. as you testified there is a growing share of seniors the number continues to go up each and every year. over the past decade they've increased funding for alzheimer's research but we are still a long way hopefully getting closer and anxiously waiting for the very first survivor. continuing investment in research is vital. for seniors suffering right now we have to find ways to treat them and take care of those
4:59 am
around them. are there any early demonstration project versus that have been effective caring for seniors with alzheimer's? >> we have a great deal of what can work and what we can build on and one of our major challenges is to connect those need the services and to take advantage of what is available for the programs in the va system to train them how to provide more effect of care or to be one of many examples. we also mentioned we had the diagnosis we have to make sure ththe commissions are choosing o do just that and then make those connections. we have a lot more to learn as well and that is why we've increased the research and it focuses on developing healthcare
5:00 am
system solutions for those with dementia because that is an important part that we need to get better at. i appreciate the work all across the system of things we can do. we have to make sure they happen but there is much more we need to learn as we hear we've heardl of the panels today. >> thank you. i appreciate that. in nine minutes left i would like to turn back to you and bb take it from a different angle you described your situation and talked about keeping it from your teachers and other people at the school. are there ideas programmers might do whether it's high school or university to help them reach out and ask for help but continue to pursue their dreams?
5:01 am
>> i didn't have people to reach out to. we had gone down a whole list of options and there is no alternative. i do think that for other caregivers who might be in my shoes we can help support them by first adding visibility and awareness on this issue and i think that many teachers and adults are not aware that there are young caregivers out there so having them knowledgeable about the issue and willing to give a listening ear and be able to have financial support for the young caregivers whether it's supporting loved ones themselves is important because that would allow people like me to not have the social isolation and all those things i experienced. >> i'm out of time and yield back. let me recognize the gentle man
5:02 am
from ohio. thank you mr. chairman and all of you for being here. i want to start with you. i know when i was in school i were to and i could be 500 miles away. i recognize what you are going through. you will be a great caregiver. when i was a resident and we were going through it was more about this patient has this and here is what we do for it. i didn't see the big picture until my sister got leukemia and then you realize this is a family event. it took me until the residency to figure out these health issues are more than just the person that i do want to say i don't want you to quit because we can talk about all these
5:03 am
things. we have a caregiver shortage into shortage in residencies whether it's medicare for all our whatever the case maybe if wmay be ifwe don't have people u continuing on the course, we are in big trouble and it is upon us to try to make sure that we can increase the number of providers and residency programs available. i hope you get your first pick when the time comes. >> i got married late and have young kids. i don't want to leave this off on them. not everyone has the wherewithal so we need to go that way.
5:04 am
then four months with my great aunt and move around. people don't have that, but i do recognize especially for my patients to have alzheimer's but it did to the rest of the family especially to a spouse. you have to get help and a lot of patience on a new found the wherewithal to get help. because of the hours you put in and the challenges that come from it, these are real issues that i'm so grateful you are bringing to our attention and knowing it is important we have more seniors than we've ever had before. i hope as we go forward we will find ways to maybe make
5:05 am
recommendations to prevent and treat alzheimer's. it took to the 1960s to say smoking causes lung cancer may be we will find some things we are doing that we shouldn't be. thank you very much. my father was diagnosed with pancreatic cancer and died three months later. hospice was wonderful. respectful, caring, able to pass away at home with his family around him. that is as good as it is going to get in those situations. i am also wanting to mention i think doctor lyon or somebody said you have to be broken to be fit. i've been saying for some time as a health system we are great at innovation and treatment and
5:06 am
stuff like that but we need to prioritize keeping people healthier longer into the more we can do, you talk about how many times some of the falls and breaks their hip and this is the beginning of the end. i see things like people working cooperatively they will come in and fix your home so eve that en your type of paper holder is a grab bar. all these things we can do to prevent calamities. we should focus on the health span my district is both urban and rural. thank you for your comments, congressman. in rural america as the challenges opted to get someone to come out and provide you with help so clearly it is an area where technology can help. i think that we also see the
5:07 am
challenges of social isolation and depression, addiction and you need someone to come and provide you support you shouldn't need to get broken or be at the end to give supportive services. the volunteerism is something the rest of the healthcare service can get and that's important for the family with hospice as. let me recognize the gentleman from new york. >> thank you mr. chairman and this is such an important issue you called the hearing about today. we hear these stories. i want to thank the witnesses. certainly you, ms. brown. a wonderful story and to all of the witnesses for devoting your life to this we appreciate your expertise in the waiting for the
5:08 am
hearing i see doctor lyon is getting more and more cold as her sweater comes out. we appreciate your expertise and we need everyone's help. i will tell you quickly my personal story. four of my grandparents lived in the house growing up, three were very sick. my mother was so remarkable, she was a registered nurse with full-time caregiver. my father was 95 and had dementia issues at the end of life. my mother was 93. they both have long-term health care insurance. when i was the mayor back in the '90s we hope to build a three assisted living facilities a big model that started to grow in the 1990s and the county executive in a new york state where we havstatewhere we have e
5:09 am
local government for the city and local counties to pay towards the decade we have hundreds of millions of stuff which is for nursing homes and looking at it and learning so much about this industry that exists, encouraging families of elderly people to get rid of their assets, give it their kids or spouse and have been reduced to take care of them and then it's legalized people get rid of their assets and then the government pays for medicaid. there's a storm coming because all of you have testified there are so many more people that are going to be in this situation as the years go on, senior citizens especially growing at enormous numbers and they have to be cared for in nursing homes which isn't the best way to end life i would argue and then you pay for it through medicaid is going to break the bank and be a bad system. we have to talk about this more
5:10 am
than we are and we have to talk about people's end-of-life issues and what it means to become frail, what are you going to do command decisions to plan for the future and we need people to buy long-term health care insurance that it's unaffordable right now there is no good model for success so we have to create an affordable long-term care program for people and i would suggest it would be a public-private partnership of some type so i want to offer right now let's try to figure out what would be the model and work with industry and get insurance companies to find out what the problems are and figure out the public piece of the government subsidizing
5:11 am
where the government helps, industry helps them they will work on that with you and ask my republican colleagues if someone wants to work with me that we develop a bipartisan proposal to finally start addressing long-term health care insurance because the storm is coming right around the corner and it may be here already. people just cannot live with this. you talk about a pilot program. would you be interested in working with the industry or doing a pilot program? >> absolutely. that's what we need. where's the voice owhere is the, this is the voice of optimism. i want to meet with you and talk about this and develop a model and maybe we can do it with a pilot program in my home county for example or some other place. let's do a pilot program or go right to the industry and set up
5:12 am
a model. with anybody else bwould anybodd in participating in that effort? >> absolutely. i think insurance companies would be interested. >> you heard stories from all of the members. every single family. this is something people care a lot more about the mvc on television these days how do we address long-term health care. this is going to resonate as a political matter and it will actually make peoples lives better. we need to get together to do the necessary work. thank you for your testimony today we are so grateful. >> we do have votes on the floor about we would like is possible to finish up. thank you mr. chairman. and thank you to the witnesses for your preparation and experience and being here today. more importantly, what to say
5:13 am
this can be a tough topic to talk about but you are here to provide the testimony. also, you have been here and i appreciate that and other members have responded us while him ancoming not just numbers tu see here especially but also the members before us that have picked up the torch and basically put forward legislation like the bipartisan effort that you mentioned 37 years ago and talked about the medicare hospice program that provides a great comfort to beneficiaries, their families and also caregivers and allows people to look up the final days of their lives with dignity. over the last decade as you know that program hathe program has n popularity and has led to new challenges and chewing a high quality of care. in july, the hhs put out a
5:14 am
couple of reports as well as the gao put out a couple reports one titled caring for aging americans and the other talking about nursing homes, better oversight needed to protect residents from abuse. we have the reports that we have cases of extreme neglect and patient abuse and facility deficiencies working on legislation to improve the programs and to ensure.
5:15 am
if i could, as you know the only remedy for the hospice providers that are cited with significant deficiencies is removal from the medicare program. they recommend they adopt the alternative sanctions which are included in the hospice program integrity bill with program integrity one is better education with better oversight they have to adapt with the additional sanctions that are
5:16 am
between you can be a program and that fits really to improve the ability to provide care so i think we are a partner in bad in terms of providing education. one size doesn't and shouldn't that also in terms of government oversight, a program that has been in existence for 40 years they have different levels if they are surveyed the same way and overseeing in the same way. so, the ability of the government to add more tools at their disposal is something that we support them by thank you for your work on this. we can't do this without the support from all of you so thank you. are you continuing to work on implementation and providing guidance? >> absolutely. we recently had a town hall
5:17 am
meeting that took questions and provided input to our members and we've had a significant discussions as well. i think that for better or worse we learn from the way other industries have sort of pretended that there are no problems. there are problems and it is the responsibility to make sure that we enhance the services provided to folks. the consumer that is on the receiving end of care we want them to get the best care possible. i look forward to accepting that responsibility with you. >> of the recognize the gentleman from kansas. they have the capacity to help support the aging americans we have the capacity to what needs
5:18 am
to be they are due in part under medicare that some of the reasonone of the reasonsi was pg with my colleague hr 4468 for nursing home workforce quality act. to introduce commonsense process
5:19 am
of improvements also helps ensure the quality standards of nursing homes are upheld allowing for additional oversight of nursing homes with systemic problems that addresses a critical shortage nurses assistants into the legislation allows nursing homes that triggered the ban on in-house training to immediately rescind such programs after the secretary certifies all quality concerns cited and fined have been addressed and resolved. this assures nursing homes continue to need high-quality standards without losing staffing levels. it's one of the issues i see running through my district with folks talking about not having enough of a skilled workforce ready to help provide the needs that they need. >> of other problems that cause patients harm or to receive a low-quality care cannot and will not be tolerated.
5:20 am
i've got a question here. it's my understanding hospitals, skilled nursing facilities, home health agencies and inpatient rehab facilities have regulations that include patients rights to be freed from abuse and neglect, however only skilled nursing facilities have regulations that defined such terms as abuse and neglect. i think they are a good definition. it is to disconnect it is the easiest regulations of the
5:21 am
language is fair and effective t of the matter is as i've mentioned before, it isn't implemented by the state. >> showed we have similar definitions across the other facilities as well ask >> i think in terms of abuse and neglect it is anywhere just like good dementia care. i would say yes it makes sense to me. >> i appreciate that. in addition to talking about nursing home care, a quick comment about alzheimer's in our fight against that. we know it's one of those most costly diseases for the elderly population especially the long-term care costs. but we live in a time of medical innovation and just last month, they said that approval for the fda for the new drug to treat alzheimer's. this is news i'm sure that will give hope to those touched with
5:22 am
this devastating disease. i hope that we will be able to find new treatments and improve the quality of life for these patients and ultimately reduce the cost associated with this disease. with that i will yield back my time. the vote on the floor gives us very little time so i would like to recognize the gentleman from nevada. >> thank you mr. chairman and into the ranking member for holding this hearing. like so many others in the room, providing quality care to our loved ones who are seniors is deeply personal and i want to thank my colleague mr. sanchez and mr. panetta as well as the entire panel for your expertise and personal perspective for bringing a young perspective to the challenges that so many people face. when i was just nine weeks old,
5:23 am
my grandmother suffered a debilitating stroke and went into a coma for six months and when she came out she was paralyzed on the left side of her body and ended up needing a round-the-clock nursing care to provide the quality of life she had for 27 years until she passed away. i visited my grandmother virtually every week in a nursing home until she passed. i know what good nursing home care looks like and bad care. you can literally smell it when you walk into a facility whether they care for their patients properly or not. i also want to share another story, mr. billy allison from las vegas. he's 81-years-old and recently spent time at a short term hospital. his wife reached up to my office recently seeking help and shared
5:24 am
her experience which is all too common for seniors and some facilities throughout the country. his care providers the individuals that are responsible for this whole feed safety stopped caring for him appropriately especially when it came to cleaning his body. they stopped beating him properly and wouldn't rotate him on his site frequently which lead to painful bedsores. he's since left the facility and is healing at home but when he was released, sylvia was worried about who was going to help her take care of billy. a challenge we have discussed in the hearing infects one in seven american women who become the primary caregivers for loved ones in their lifetimes. according to the aarp, caregiving is particularly time sensitive, time intensive for those caring for a spouse.
5:25 am
most provide nearly 44.6 hours of care a week, truly a full-time job. luckily my office was able to work with the family and help them secure a home health nurse. since we communicated with them last, delete and sylvia reported they are happy with the nurse who comes to their home and supports their families caregiving and medical needs. i'm glad my office was able to assist them, but it shouldn't take congressional assistance for american seniors with their loved ones to live their lives with dignity and respect by our health care system. so, i want health care which my grandmother depended. can you speak to how congress can work to provide seniors with alternatives and copies the improve patient quality of life?
5:26 am
>> we touched a lot of on the nursing homes. they are supposed to provide a home life setting and the fact that it doesn't. those requirements are ignored and we hope and plead as family and rescind advocates to avoid being dragged to death. that being said, the other alternatives of course more and more people are looking for those alternatives. it's, a number of times today. the problem from our perspective is we are seeing a population for those that are considerable
5:27 am
in the residential setting that is great but there has to be some kind of quality that is meaningful and consistent. more and more states have medicaid assisted living. the ability to foreword to age with dignity is one of the issues i hear the most about that given the limits of time i would like to submit my statement and questions for the record. >> i yield the remainder of my
5:28 am
time. >> let me thank the witnesses for the testimony please be advised there are two weeks to be answered and questions will be made a part of the formal hearing recorddeficit and commu.
5:29 am
this is two hours. >> the hearing will come to order. thank you for coming to the committee today to testify. we know you are on a tight schedule and in order to keep you on schedule and ensure all members have an opportunity to ask questions i ask unanimous can send members will be recognized during the question and answer session for


info Stream Only

Uploaded by TV Archive on