[indiscriminate chatter] rep. Neal will members and their guests please take their seats . The ways and Means Committee will come to order. That morning and welcome. We are here to discuss a difficult issue that confronts nearly every family in our nation and that is how to care for our loved ones as they age. It is certainly appropriate that we work to address this matter in november which is alzheimers Awareness Month and u. S. National family caregivers month. It is a deeply personal issue for many of us in the room, for those of us who have not personally struggle to ensure an older relative receive the care they need, you most certainly know someone in your life who has. Fragmented and insufficient longterm care system not only be confusing and emotionally taxing but also enormously expensive, indeed, even unaffordable. Inhome careock costs about 180,000 a year, it costs over 80,000 a year to live in a nursing home and assisted living causes 43,000 a year. These high prices certainly weigh heavily on aging americans and their families as they try to plan for future longterm care needs. Age inericans want to their homes, but they need help to stay there, relying heavily on Family Members and friends for daytoday assistance. Uncompensated caregivers like our witness Christina Brown are the Unsung Heroes and many of these cases. Often, their own health, finances and, and relationships become strained as they take on caregiving roles and exacerbating these challenges is our nations failure to andantee paid family medical leave compared other industrialized nations. We want to thank christina and all other witnesses for being here today courageously will tell their personal stories and share their expertise. At this time, i want to yield my time to a congresswoman, Linda Sanchez who has recently told me ofher familys moving story caring for loved ones experiencing dementia as they have aged. Let me yield it to her so she can share her relationship with the committee. This is neither democratic or republican. Ms. Sanchez. Rep. Sanchez thank you, mr. Chairman. Im incredibly grateful for your leadership on this issue and i am so pleased that you called a full Committee Hearing so that all Committee Members have the chance to address this incredibly important area of health care. Thosey, i want to thank joining us here today and to give us ideas and their stories on what they confront. For millions of American Families, the heartbreak of watching a loved one struggle with alzheimers disease or related dementia is a pain that we know all too well. This devastating disease disproportionately affect certain groups especially women and the latino community. Are 1. 5 times more likely than nonlatinos to develop alzheimers disease. Nearly 20 of30, all americans experiencing dimension will be latinos or africanamerican. But it is not a disease that is singular to minority communities, it affects every community. The statistics should scare all of us. I understand the pain that this disease brings to families because my father recently passed from alzheimers. We saw him struggle with the disease for more than 15 years and it was a long, slow, painful decline. It was frustrating to watch a once vibrant man who had sacrificed and done so much for my family, slowly loses independence. It was equally hard knowing there was nothing that i could do to stop the diseases progression. Enough,was not cruel two months ago, my mother maria was diagnosed with the same disease. Alzheimers is relentless and it is cruel. It does not progress at a constant speed. There are good days and bad ones and there are times when the scale and magnitude of the disease seems pretty overwhelming. 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 burdens for my mother has we did for my father. We are fortunate because we all 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 everyone is fortunate to have the large support network that we have. Many people are only children having to care for aging loved ones, many are in the Sandwich Generation having to raise children and care for aging parents. Many dont live in the same states as their aging parents. We rely on caregivers and the statistics on caregiving in america is astounding. Over 40 million americans currently deliver unpaid care to to an aging relative or friend. The cdc reports more than 16 million americans, nearly half of all caregivers, provide more than 17 billion hours of unpaid care for families and friends living with all with alzheimers. About two thirds of these caregivers are women thus this they are disproportionately impacted, and another quarter care for an aging parent and for children under the age of 18. Hispanics and africanamerican caregivers experience higher burdens from caregiving than their counterparts. We have to address successful tragedies for dealing with our aging population. We must help caregivers and ease their financial caregiving burdens. Our only option for now because we dont have a cure for all dementia,heimers and is to promote and enact policies that improve the lives of the patients in the caregivers. I look forward to discussing these topics with our witnesses later in the hearing and i encourage my colleagues to take advantage of the wisdom of our panel of witnesses, and again, i want to thank you, mr. Chairman, for calling this hearing and i yield back. Rep. Neal thank you, congresswoman. I want to acknowledge your candor and openness to bringing this topic forward. Let me recognize the Ranking Member, mr. Brady for an Opening Statement. Rep. Brady thank you, mr. Chairman. 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 10,000 baby boomers retiring each day, republicans have been leaders in helping americas aging population. In 2003 under the leadership of president bush and republican congress, i was proud to help time in theirst affordable life savings perception 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, i am 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 are hospitalized. But the status quo is not working for aging Medicare Beneficiaries getting care. 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 best and correct settings for care. Over five years later, this law is working. They are collecting data in a nonpartisan medicare payment as way head of the curve taking steps to determine how congress can create tradition with a unified postacute human system focused or seniors on quality and accountability. Though there is still more to do , this work means america seniors and medicare are in a better place. Also serving this committee, i was proud to join our Social Security subcommittee leader sam johnson and john larson for the past to strengthen protections or Social Security beneficiaries act. Points ofuritys representative pay when a person is unable to manage their own Social Security benefits. Representative hayes played an Important Role in how we care pay played anive Important Role in how we care for aging americans. However, there were serious concerns about representative pay the Congress Friendly needed to address. Together republicans and democrats who worked to strengthen to oversight also reducing the burden on Family Members. Giving americans a greater say in selecting their pay if they should need one in the future, and ensuring that this was a person they could trust. These were not small acts, but we made substantial changes to our title i programs to help those receiving Social Security and medicare benefits. Republicans remain eager to work with the democrat colleagues to continue strengthening these programs for americans. I do admit that part of our work is in congress is to stop what we believe are dangerous ideas from being signed into law. We are very concerned. Forker pelosis cures patients act would stop new cures from being developed for our seniors. That partisan legislation which passed out of this committee would tell our seniors alzheimers, and those who care for them, and a hope for a cure is at risk. Hrthree is the first step in what we worry is a very extreme healthcare agenda including medicare for all. This affects that this radical Health Care Program approach would have on our seniors is unfathomable. In their place long white lines and not being able to go to the doctor of their choice. That is a lifethreatening change, especially for 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 to continue improving these programs. We owe it to future generations to ensure our safety net can continue to deliver on this promise. Today we will hear from a panel of expert witnesses about serious programs that plagued the Medicare Program today, especially for the sickest patients. Some of these quality issues are 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. Theanteeing them choice in health care for over the time that they want, and not for washington to think what is best for them. As i close, i want to recognize one of our staffers as she departs for a new adventure in her home state of ohio. Beenxemplary work has critical to advancing bipartisan solution to the problems americans face each and every day. Her departure is bittersweet and we will miss her and wish her the best of luck. Inky, chairman. Rep. Neal think rep. Brady thank you, chairman. Rep. Neal thank you, and we carla, but one of the things we have all been fortunate and happy to have here is her significance. We are grateful for the work she has done in particular and we wish her well and thank her for her service as she embarks on a new journey in life. [applause] rep. Neal i want to thank mr. Brady and without objection, all members Opening Statements will be made part of the record. I want to thank ours distinguished witnesses to discuss these very important issues. First, we want to welcome Christina Brown, a caregiver and current medical student. The chief Public Policy officer of the Alzheimers Association. , a fellow toynn improve elder care. , theext guest executive director for longterm care coalition. The president and ceo of the national hospitalist and pallets of care organization. Each of you will have your statements made part of the record. 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. When you have one minute left, the light will switch from green to yellow and finally red when the five minute erupt. Ms. Brown good morning. You for the opportunity to share my thoughts this morning. My name is Christina Brown, i am a caregiver and medical student. Suddenlys 16, my life shifted my mother at 43 years old lost the ability to walk due to multiple sclerosis. She could no longer stand, eat, or babies without assistance. I became her primary caregiver and for six years, provided 10 hours of care each day. In spite of what many may think, having a disability does not guarantee access to resources. Because my mother had an income of 36,000 from her divorce settlement, is younger than 65, and lacks a 10 year employment history, she has been the night medicare, Social Security, disability, and medicaid despite its expansion. Her private Insurance Company like most does not cover homecare for daily need to i filled in the gaps. In high school, i would wake up at 5 30 a. M. Each day to help with the bath and left my mother into it 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 olarship from out of the we could not afford extra help and we had a few alternatives. Most nursing facilities serve only seniors, and even if we found one for younger adults like my mother, the cost of that character could exceed 10,000 a month. Homecare is only slightly more affordable at 6,000 or 7,000 a month. Like many families, we cannot afford fulltime coverage and like many caregivers, i was made to feel invisible. Like my health and my future did not matter. I had taken out loans to pay my mothers mortgage, and worked a weekend job on top of being a fulltime medical student or it combined with my sisters meager salary, that barely ensured my mothers survival. We are running out of option. We could sell our home to qualify for state assistance or i could leave medical school to become a fulltime caregiver for my mother, but even these extreme temporizing measures would only drive us further into a vicious cycle of financial instability. Caregiving fuels generational poverty with an even greater impact on millenials and women who take on that role. When women become caregivers, they become two and a half times 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 and medical school was moving to start a new job. I canceled my board exams and dropped everything so i could fly home. Since we could not afford a home care agency, i recruited and trained caregivers that i found online. I filled out reams of applications and made a flurry of phone calls to my mothers social worker, health and Human Service department, and the regional Disability Research center seeking Financial Support. So far, none has arrived. I have returned to campus, and this arrangement is tenuous and allconsuming, already Home Health Aides have quit unexpectedly, leaving my mother to forgo regular meals and bathing, while a thousand miles away, i scribble to find a replacement. From week to week, i still do not know whether my mother will receive the care she needs. As this Committee Meets to discuss caring for aging americans, ask you take steps to ensure families like mine do not continue to fall through the cracks. First, we must eliminate age gaps and income gaps so that middleaged, middle income adults with disabilities can qualify for longterm care through medicaid, especially when their home care expenses far exceeded their income. The medicaid cut off should not be based on income alone but rather on income adjusted by care costs. Second, the family medical leave act should provide paid leave to caregivers and universities should offer support stipends to help ease the burden on student caregivers like me. Third, we must aim for universal longterm care to ensure every adults with disabilities has Affordable Access to sustainable care. This will be costly but doing nothing will only serve a silent punishment to individuals and individuals with disabilities and their caregivers. No family or young caregivers should have to sacrifice their health, education, and Financial Stability just to meet basic human needs. Numbers cannot capture the cost have occurred over the past decade. Sleepless nights, dreams deferred, and my mother calls me to apologize for being sick. Despite the uncertainty of the situation, i work on carving a new future for my family and others like ours. Thank you for listening. Rep. Neal thank you. Would you please proceed . Thisank you for Holding Important hearing today and with the opportunity to testify on how Americans Care for its aging population including those with alzheimers, related dementias, and their caregivers. Alzheimers is a progressive the generative alzheimers is a progressive brain disorder the damages and eventually destroys brain cells. It leads to loss of memory, thinking that, and other brain functions. Ultimately, alzheimers is fatal and we have two syllabi the first survivor of this devastate wheat we have yet to celebrate the 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 alzheimers by 2050. In addition to the suffering caused by the alzheimers is also creating an enormous strain on family finances, Health Care System, and federal and state budget. All timers is the most is pensive condition in america ath costs set to skyrocket unprecedented rates. Just this year alone medicare and medicaid will cover the cost of more than two t