Reasonably priced longterm care for Senior Citizens. This is three and half hours. [inaudible conversations] [inaudible conversations] [inaudible conversations] wood members at their desk please take their seat. Ways and Means Committee will come to order. Good morning, welcome. We are here to discuss a difficult issue that confronts nearly every family in our nation. That is how to care for our loved ones as they age. It is appropriate we work to address this matter in november which is all summers Awareness Month. And u. S. National Family Caregivers month. Its a deeply personal issue for many of us in the room and for those who have not personally struggled to ensure an older relative received the care they need, you most certainly know someone in your life who has. Navigating a fragmented and insufficient longterm care system can not only be confusing and emotionally taxing but also enormously expensive, indeed, even unaffordable. Aroundtheclock inhome care costs about 180,000 a year in costs over 80000 a year to live in a nursing home and assisted living costs 43000 a year. These high prices certainly weigh heavily on aging americans and their families as they try to plan for future longterm care needs. Most americans want to age in their homes but need help to stay there, relying heavily on Family Members and friends for daytoday assistance. Uncommented caregivers like our witness, Christina Brown, are the Unsung Heroes and many of these cases. Often their own health, financial and relationships become strained as they take on caregiving roles and exacerbating these challenges in our nations is our nations failure to guarantee paid family and medical leave compared to other industrialized nations. We want to thank christina and all are witnesses for being here today who courageously will tell their personal stories and share their expertise. At this time i want to do something thats a bit unusual and i want to yield my time to converse woman Linda Sanchez who has recently told me of her familys moving story of caring for loved ones expanding dementia as they have aged. I will yield her so he she can share her relationship with the committee. This is neither democratic or republican issue but ms. Sanch ms. Sanchez. Thank you. Im incredibly grateful for your leadership on this issue and im so pleased you called a full Committee Hearing so that all Committee Members have the chance to address this incredibly important area of healthcare. Finally i want to thank our witnesses for joining us here today and to give us ideas and their stories on what they confront. For millions of American Families much like my own 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 disproportionally affects certain groups especially women and the latino community. Indeed, latinos are one and half times more likely than non latinos to develop all summers disease. By the year 2030 nearly 40 of all americans living with dementia will be latino and africanamerican but it is not a disease that is singular to minority communities but affects every immunity. These 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 lose his independence. It was equally hard knowing there was nothing i could do to stop the disease from progressing. As if that was not cool enough to years 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 who has a large Family Income 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 live within 30 minutes of her home and within 30 minutes of each other. Fortunately for now my mom is still living in her home. Not everybody is fortunate to have a large support network that we have. Many people are only children and having to care for aging loved ones and many are in the Sandwich Generation having to raise children and care for aging parents. Many dont live in the same state 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 an do 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 summers. About two thirds of these caregivers are women thus this personally 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 and 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 summers and dementia 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 ideal back. Thank you, congresswoman. I want to acknowledge her candor and openness to bringing this 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 americas 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 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 americas seniors and medicare are in a better place. Also serving this committee i 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 Securitys [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. Hes 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 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 pelosis 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. Thats eight lifethreatening 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 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 carlas 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 weve 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] 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 Longterm Care Community Coalition and finally we have the president and ceo of the national hospitalist and Palliative Care organization. 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 youre 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 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 care exceeds 10000 a month. Homecare is only slightly more affordable at six or 7000 a month. Like many families we cannot afford fulltime 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 mothers mortgage and worked weekend job on top of being a fulltime medical student and combined with my sisters meager salary that barely ensured my mothers 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 fulltime 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 millennials and women who take on that role. When women become caregivers they become two and 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 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 mothers 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 allconsuming 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 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 longterm 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 longterm 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 should have to sacrifi