[Senate Hearing 112-255] [From the U.S. Government Publishing Office] S. Hrg. 112-255 ENSURING QUALITY AND OVERSIGHT IN ASSISTED LIVING ======================================================================= HEARING BEFORE THE SPECIAL COMMITTEE ON AGING UNITED STATES SENATE ONE HUNDRED TWELFTH CONGRESS FIRST SESSION __________ WASHINGTON, DC __________ NOVEMBER 2, 2011 __________ Serial No. 112-10 Printed for the use of the Special Committee on AgingAvailable via the World Wide Web: http://www.fdsys.gov _____ U.S. GOVERNMENT PRINTING OFFICE 72-456 PDF WASHINGTON : 2012 ----------------------------------------------------------------------- For sale by the Superintendent of Documents, U.S. Government Printing Office Internet: bookstore.gpo.gov Phone: toll free (866) 512-1800; DC area (202) 512-1800 Fax: (202) 512-2104 Mail: Stop IDCC, Washington, DC 20402-0001 SPECIAL COMMITTEE ON AGING HERB KOHL, Wisconsin, Chairman RON WYDEN, Oregon BOB CORKER, Tennessee BILL NELSON, Florida SUSAN COLLINS, Maine BOB CASEY, Pennsylvania ORRIN HATCH, Utah CLAIRE McCASKILL, Missouri MARK KIRK III, Illnois SHELDON WHITEHOUSE, Rhode Island DEAN HELLER, Nevada MARK UDALL, Colorado JERRY MORAN, Kansas MICHAEL BENNET, Colorado RONALD H. JOHNSON, Wisconsin KRISTEN GILLIBRAND, New York RICHARD SHELBY, Alabama JOE MANCHIN III, West Virginia LINDSEY GRAHAM, South Carolina RICHARD BLUMENTHAL, Connecticut SAXBY CHAMBLISS, Georgia ---------- Debra Whitman, Majority Staff Director Michael Bassett, Ranking Member Staff Director CONTENTS ---------- Page Opening Statement of Senator Kohl................................ 1 Statement of Senator Bill Nelson................................. 2 PANEL OF WITNESSES Statement of Barbara Edwards, Director of the Disabled and Elderly Health Programs Group, Centers for Medicare and Medicaid Services, US Department of Health and Human Services, Washington, DC................................................. 4 Statement of Martha Roherty, M.P.P., Executive Director, National Association of States United for Aging and Disabilities, Washington, DC................................................. 6 Statement of Larry Polivka, Ph.D., Scholar in Residence, Claude Pepper Foundation, Florida State University, Tallahassee, FL... 8 Statement of Alfredo Navas, Private Citizen, Cutler Bay, FL...... 10 Statement of Steve Maag, J.D., Director, Residential Communities, Leading Age, Washington, DC.................................... 12 Statement of Robert Jenkens, Director, Green House Project, NCB Capital Impact, Arlington, VA.................................. 15 APPENDIX Witness Statements for the Record Barbara Edwards, Director, Disabled & Elderly Health Programs Group, the Centers for Medicare & Medicaid Services (CMS), Washington, DC................................................. 36 Martha Roherty, Executive Director, National Association of States United for Aging and Disabilities (NASUAD), Washington, DC............................................................. 48 Alfredo Navas, private citizen, Cutler Bay, Florida.............. 58 Steve Maag, J.D., Director, Resident Communities, LeadingAge, Washington, DC................................................. 62 Robert Jenkens, Director, Green House Project, NCB Capital Impact, Arlington, VA.......................................... 70 Additional Material Requested for the Record July 16, 2011 Miami Herald Article ``Assisted-living facility blamed in woman's drowning death''............................. 73 CMS's identification of some states with best practices in quality improvement............................................ 77 Additional Statement Submitted for the Record American Seniors Housing Association, Washington, DC............. 78 Assisted Living Consumer Alliance, Washington, DC................ 83 Assisted Living Federation of America, Alexandria, VA............ 89 Families for Better Care, Tallahassee, FL........................ 93 Florida Agency for Health Care Administration, Tallahassee, FL... 96 National Association of State Long-Term Care Ombudsman Programs, Sacramento, CA................................................. 122 National Center for Assisted Living, Washington, DC.............. 124 Voices for Quality Care, Leonardtown, MD......................... 142 ................................................................. ................................................................. ................................................................. ................................................................. ENSURING QUALITY AND OVERSIGHT IN ASSISTED LIVING ---------- WEDNESDAY, NOVEMBER 2, 2011 U.S. Senate, Special Committee on Aging, Washington, DC. The Committee met, pursuant to notice, at 2:03 p.m. in Room SD-G50, Dirksen Senate Office Building, Hon. Bill Nelson, presiding. Present: Senators Kohl, Nelson [presiding], Whitehouse, Manchin, and Corker. OPENING STATEMENT OF SENATOR HERB KOHL, CHAIRMAN The Chairman. Good afternoon, and we thank you all for being here today. We're very pleased to have Senator Bill Nelson, a longtime member of this committee, chair this hearing. He's a committed and hard-working member of this panel. Senator Nelson's great state of Florida is home to the largest number of seniors in our country and a leader among states in trends that shape long-term care, including assisted living. We've also paid a great deal of attention to long-term care in Wisconsin. In fact, two years ago, we reached a point where the number of people living in assisted living residences exceeded the number living in Wisconsin's nursing homes. More and more older Americans are looking for options that let them stay within their community and allow them to remain as independent as possible for as long as possible. Recognizing the growing importance of assisted living, the Aging Committee hosted a roundtable in March when Senator Corker and I gathered 19 talented experts to discuss a wide range of topics, including ways to address the need for more affordable assisted living and how to deal with consumers who can no longer afford to pay for their care. So this afternoon, we're looking to this panel to help us craft solutions in two key areas, quality assurance and oversight. Assisted living encompasses a large variety of residential options and levels of care that vary from state to state and even within states. Despite the many differences, we need some level of consistency in the quality of service and safety standards that all providers should be expected to meet. We also need to understand how best to enforce these standards and at what level of government. And we need to provide much more transparency about quality and foster a better dialog between residents, their families, and providers so that tragedies like the one that Mr. Navas will relate are prevented. We look forward to hearing from all of you, and we thank you again for coming. With that, I turn to my very good friend and a great, great senator, Bill Nelson, who has been deeply involved in this very important issue. Senator Nelson. STATEMENT OF SENATOR BILL NELSON Senator Nelson [presiding]. Mr. Chairman, thank you, and thank you for giving me the privilege of chairing this hearing today on an extremely timely topic, Ensuring Quality and Oversight in Assisted Living. This spring, the Miami Herald--it had a three-part series, ``Neglected to Death.'' It reported on abuses at several of Florida's assisted living facilities. And the report found that 70 people had died from abuse or neglect since 2002; that 1,732 homes were caught using illegal restraints like ropes, locking residents in closets, and tranquilizing drugs. And the state caught providers falsifying records--and that included medical records--in death cases 181 times. These stories, unfortunately, are not just limited to Florida. In Pennsylvania, emergency room workers removed 50 maggots from a resident's open facial wound. And in New York, a senior died after caretakers mistakenly gave her someone else's prescription. In Virginia, police responded to a 911 call and found one resident lying on the floor calling for help while another was struggling with a catheter. Now, it doesn't mean that assisted living facilities across the country are failing. I know of many in my state that are honest providers, genuinely caring for residents and operating high-quality homes. And that's what we would hope for any of our family members, and we have high-quality ALFs across the country. But even one case of misconduct is one too many, and both consumers and providers want to prevent these kinds of abuses. The chairman's Aging Committee has always been very involved in promoting quality in assisted living. In 2001, this committee examined the role of assisted living in the 21st Century, and it focused on consumer protection, staff training, and assistance with medications. And after that hearing back in 2001, a group of nearly 50 national groups representing providers, consumers, long-term care professionals, and regulators came together to develop recommendations on improving the quality and presented those recommendations in 2003. And just this year, Chairman Kohl and Ranking Member Corker organized a roundtable, as the chairman had mentioned, of 20 assisted living professionals to tackle three major issues facing us today--quality, affordability, and creating aging in place environments--so older and disabled adults could continue to live independently. So it's fitting that we're here today to continue this important discussion and to turn our focus to quality and oversight. About 1 million Americans make their home in assisted living, and among that is about 131,000 Medicaid recipients. Most assisted living is privately funded, but more and more Medicaid dollars are going to assisted living. Assisted living is growing at a faster rate than institutional care, institutional care like nursing homes. Medicaid participants in assisted living grew 43 percent in the seven years from 2002 up, while nursing home spending only increased about 10 percent. The federal investment in assisted living will continue to grow as states and consumers look for alternatives to institutional settings. This doesn't only have implications for Medicaid, but there are many indirect costs to Medicare as well. So the people in long-term care facilities often make up a large share of Medicare spending. They have high rates of hospital and emergency room visits. Many of these visits can be prevented if caretakers are properly equipped with the skills and tools they need to serve our seniors. But how do people know if the assisted living facility they're choosing is properly equipped? How can individuals and their families make the right decision on the best environment? And that's one of the big challenges. There's no single definition of what an assisted living facility is, and every state regulates them in a different way. And because of this variety, residents and their families often rely on information from the facilities themselves, and every state has different requirements on what kind of information the providers are required to disclose. Some states don't even have any disclosure requirements. All Americans, no matter what state they live in, should have the tools that they need to make the right choice. So even though this isn't a new issue--and this committee discussed this lack of disclosure back in 2001, and the GAO noted the lack of consumer education in reports going back to 1999 and 2004. So we're going to have to ask ourselves in this hearing if we've been talking about the same problem for over 10 years, why are we still talking about it? What are the solutions? We all know that disclosure isn't the only solution. And when something goes wrong, folks need to know that their complaints will be heard and that someone will be held accountable. Every American, no matter what the state is that they live in, should be afforded some basic protections. And most states require that facilities be inspected every one or two years. But there are even some states that it's once every four years. California only requires inspections every five years, and Texas requires inspections when they're deemed appropriate. Inspection reports are public in almost all of the states, but 23 states only make these reports available upon request. And many states are struggling to inspect more and more facilities with limited resources. So that's what we're going to dig into today, and we're fortunate to have several experts. The first witness, Barbara Edwards, serves as the Director of the Disabled and Elderly Health Programs Group in the Center for Medicaid and CHIP Services at CMS. Ms. Edwards has almost 30 years of public and private sector experience in healthcare financing and its nationally recognized--she is a nationally recognized expert. Ms. Martha Roherty is the Executive Director of the National Association of States United for Aging and Disabilities. And that represents the nation's 56 state and territorial agencies on aging and disabilities. Dr. Larry Polivka. Dr. Polivka. Correct. Senator Nelson. Polivka. Well, that's because you're at FSU. He's the Executive Director of the Claude Pepper Center at Florida State University and was Director of the Florida Policy Center on Aging until 2009. Alfredo Navas is a resident of Florida and is here to share the story of his mother, Aurora Navas, who passed away due to the negligence at an assisted living facility. Steve Maag--the Director of Residential Communities at Leading Age, an organization of non-profit, long-term care providers. Mr. Maag is responsible for developing and implementing public policy, including assisted living, continuing care, retirement communities, and senior housing. And Robert Jenkens is the Director of the Green House Project, a nursing home alternative that offers independence and dignity to residents. He's also vice president at NCB Capital Impact, where he provides policy and development consulting to states and organizations interested in promoting quality assisted living. So thank you all for being here. We'll just go right down in the order. See if you can confine your comments to five minutes, and then we'll get into a lot of questions. Mr. Chairman, did you have anything else? Okay. Please, Ms. Edwards. STATEMENT OF BARBARA EDWARDS, DIRECTOR OF THE DISABLED AND ELDERLY HEALTH PROGRAMS GROUP, CENTERS FOR MEDICARE AND MEDICAID SERVICES, U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES, WASHINGTON, DC Ms. Edwards. Senator Nelson, Chairman Kohl, Ranking Member Corker, and members of the committee, thank you for the invitation to discuss how the Centers for Medicare and Medicaid Services can support states in offering long-term care options that promote independence and choice and assure that Medicaid beneficiaries have the opportunity to live and fully participate in their communities. Medicaid is the largest purchaser of long-term services and supports in the nation. State-designed Medicaid programs offer long-term care services to elderly and younger Americans with significant physical and cognitive impairments through both institutional settings, such as nursing homes, and home and community-based settings. Assisted living facilities are one of many settings in which home and community-based services, or HCBS, may be provided. And assisted living facilities are often identified as providers of HCBS, including personal care supports, homemaker chore services, and assistance with activities of daily living, among others. Unlike nursing home care, which states are required to provide under federal Medicaid law, state Medicaid programs are not required to cover services offered at assisted living facilities, even for residents who are otherwise covered by Medicaid. Also in contrast to nursing home services, Medicaid does not cover the cost of room and board in any assisted living facility or other community-based residential setting. However, the vast majority of home and community-based services are provided under what are called 1915(c)--Section 1915(c) of the Social Security Act, which authorizes the secretary to waive certain statutory Medicaid requirements to allow states to provide alternatives to institutional care. Forty-eight states and the District of Columbia offer services through more than 320 active, home and community-based waiver programs, and the two other states provide similar services through a Section 1115 waiver. So all states are providing home and community-based services to Medicaid consumers. Defining, licensing, and oversight of most HCBS providers, including assisted living facilities, is largely a state responsibility. CMS does not define what qualifies as an assisted living facility, nor are there federally established conditions of participation in Medicaid, again unlike nursing homes where there is both federal law and regulation with regard to the operation of nursing homes. Depending on the state, assisted living facilities may take the form of group homes, adult day or foster care settings, or senior living communities. Assisted living facilities, therefore, can vary in the population they serve, in their size, and, as Mr. Nelson was describing, their payer mix. Medicaid is typically not a major participant in the financial support for residents of assisted living facilities. While there is no specific federal licensure requirements for HCBS providers, Section 1915(c) statute and regulations require that the state demonstrate several assurances regarding its waiver programs, including assurances related to participant health and wellbeing. CMS requires a state to specify the services to be offered through a waiver, identify the qualifications of service providers, and identify the standards required for settings in which care is delivered. A state must demonstrate that it is prepared to protect participants in a number of ways, assuring that providers and settings meet the specified qualifications set by the state, assuring that individuals receive the services identified in a person centered plan of care, monitoring participant health and wellbeing, and identifying and responding to allegations of abuse that involve waiver participants. In addition, a state must submit a quality improvement strategy that identifies, addresses, and seeks to prevent poor outcomes or abuse and neglect. To satisfy federal monitoring requirements, states must submit evidence that they are meeting the assurances, including a final report in the year prior to the expiration of the state's three or five-year waiver period. Continuation of a waiver requires a determination by CMS that the state has met the waiver assurances and other federal requirements. At present, if CMS identifies serious quality issues, such as potential harm to the health and wellbeing of waiver participants, CMS can conduct special onsite reviews, offer technical assistance from a national quality improvement contractor, require a corrective action plan, or even terminate or refuse to renew the state's waiver. CMS is currently developing updated regulations regarding Section 1915(c) that could enable CMS to employ additional strategies to ensure state compliance with the requirements of a waiver, short of waiver termination or non-renewal, which can have pretty significant detrimental impact on individuals in the state. The proposed regulations would also standardize and improve person-centered planning and establish standards regarding the characteristics of settings of care to better assure that individuals receive waiver services in settings that are home- like and provide a true alternative to institutional living. Thank you for the opportunity to draw attention to CMS's efforts to provide Medicaid beneficiaries with quality services in their homes and communities, including in assisted living environments. CMS is committed to continuing our efforts to engage consumers, caregivers, providers, and states to better support the design and delivery of long-term care services that enable individuals with cognitive and physical impairments to have access to quality long-term care in their homes and communities. [The prepared statement of Barbara Edwards appears in the Appendix on page 36.] Senator Nelson. Thank you, Ms. Edwards. Senator Corker, a statement? Senator Corker. I don't normally make statements, but I want to thank you for having the hearing. I know you've had some things, especially in your state, that raised alarms, and I appreciate you bringing it to our attention. Thank you. Senator Nelson. Ms. Roherty. STATEMENT OF MARTHA ROHERTY, M.P.P., EXECUTIVE DIRECTOR, NATIONAL ASSOCIATION OF STATES UNITED FOR AGING AND DISABILITIES, WASHINGTON, DC Ms. Roherty. Senator Nelson, Chairman Kohl, and Ranking Member Corker, on behalf of the National Association of States United for Aging and Disabilities, I would like to thank the Senate Committee on Aging for the opportunity to testify at today's hearing on assisted living facilities. Assuring quality across the continuum of home and community-based services is a key priority for our association. NASUAD represents the nation's 56 state and territorial agencies on aging and disabilities which play a variety of roles with respect to assisted living. Some of our member agencies collaborate with their partners in the Medicaid agency to develop and operate Medicaid financed assisted living services, while others oversee assisted living operations in the context of the Medicaid quality monitoring strategies. Additionally, many NASUAD members are responsible for the Adult Protective Services Program in their state, and most also administer the State Long-Term Care Ombudsman Program, as well as the information and referral agencies, including the Aging and Disability Resource Centers. Increasingly, individuals that need the long-term services and supports are choosing to live in residential settings such as assisted living facilities instead of nursing homes. Accordingly, over the past several years, the number of beds in nursing homes has been on the decline while the number of beds in other residential settings has been steadily growing. As this trend continues, so do the opportunities for us to work together to enhance the quality of care across the home and community-based continuum. As Barb mentioned, the only federal requirements for state oversight and monitoring of assisted living facilities exist in the context of the Section 1915(c) Medicaid waivers. However, Medicaid licensed units comprise only a small portion of assisted living facilities. And there's no federal guidance outlining or enforcing a state's role in the oversight and monitoring of the private pay assisted living facilities which make up the majority of the marketplace. In my formal written statement, I outline in more detail the core quality and oversight components that states deliver. But in my oral statement today, I'll focus on the five key recommendations supported by our members. The first is building on the recommendations made by the Senate Aging Work Group that Senator Nelson talked about. NASUAD's first recommendation is for the development of a federal framework to help standardize the requirements for the Resident's Bill of Rights and a Disclosure Statement. Currently, about half of the states have requirements for residents' rights and virtually all have a disclosure statement, though the content varies considerably from state to state. Federal guidance in this area along with suggested tools to help the states ensure compliance would promote national standards for assisted living residents while offering prospective assisted living residents and their families a consistent format for comparing assisted living options. NASUAD members also support an increased federal investment in options counseling, including counseling service delivered by the information and referral staff and the Aging and Disability Resource Centers. Potential residents of assisted living, particularly those who could quickly exhaust their resources and turn to the Medicaid program, need objective third-party assistance with understanding their options, including what they can afford and for how long. Even with the federal support for this program that you're already giving us, states report that they do not have adequate funding to meet the demand for these services. Our third recommendation is increasing the federal funding for state programs that provide resident advocacy services, including Adult Protective Services and the State Long-Term Care Ombudsman Program. Through a regular presence in assisted living facilities, ombudsmen are uniquely positioned to both monitor a facility's quality and address resident complaints. An increased federal investment would increase the program's ability to provide and ensure quality. Given the responsive nature of adult protective workers who conduct investigations when they receive a formal complaint report, a federal funding stream dedicated to APS would similarly allow these workers to increase the program's existing capacity and better protect residents of assisted living facilities. Specifically, increased and dedicated funding would enable APS and ombudsmen to leverage their authorized access which they currently have to assisted living facilities by allowing them to conduct more visits, both scheduled and unannounced, and these programs would be better able to supplement the work of the state survey and licensure agencies, which generally survey assisted living facilities once a year. Fully funding the Elder Justice Act is the fourth NASUAD member recommendation. As the number of aging consumers grows, so does the need to protect the most vulnerable among us, in part, by improving the quality and accessibility of resources regarding long-term care, including assisted living. The Elder Justice Act provides such consumer safeguards and protections, but does not provide funding to carry out the duties it was assigned. That is why, in addition to increasing the funding for the Ombudsman Program and dedicated federal dollars to the provision of Adult Protective Services, an adequate investment is also needed to implement the Elder Justice Act. Finally, NASUAD members support a broad federal definition for assisted living that's based on the core principles of assisted living that were developed by the committee's work group in 2003. There is tremendous variation among the states in their assisted living definitions, and, therefore, the federal framework must be broad enough to account for the wide array of state models while still addressing the autonomy, choice, privacy, and dignity of all assisted living residents. So thank you again, Senator Kohl, Senator Corker, and Senator Nelson, for your leadership on these important issues and for the invitation to testify here today. I welcome your questions and comments and look forward to continuing to work together to improve the quality of life for older adults and individuals with disabilities in whatever place they call home. [The prepared statement of Martha Roherty appears in the Appendix on page 48.] Senator Nelson. Thank you, Ms. Roherty. Dr. Polivka. STATEMENT OF LARRY POLIVKA, PH.D., SCHOLAR IN RESIDENCE, CLAUDE PEPPER FOUNDATION, FLORIDA STATE UNIVERSITY, TALLAHASSEE, FL Dr. Polivka. Thank you, Senators. I'm going to talk about three areas primarily regarding the assisted living situation in Florida. One is the origins of the governor's Assisted Living Work Group that I am the chairman of. Two is the mission of that work group. And three is current status and future plans. The work group essentially came from concern about the reports in the Miami Herald that Senator Nelson referred to earlier in May and June of this year. Beyond that, however, there was also, I think, a general perception in the assisted living community, in the advocacy community, and among policy makers that we have not looked at assisted living in several years in Florida. And I imagine that's probably true in many states. During that time, the program has virtually doubled in size. In terms of the population, it now has more--we now have more beds in assisted living than in nursing homes, about 82,000. We have almost 3,000 facilities. And that's over about a 10 or 12-year period. We project at least that much growth in the next 10 years. And so I think there was a general perception that it was time to take a systematic look at what we were doing in assisted living, both from a general policy perspective and from a regulatory perspective, to deal with some of the issues that have emerged over the last 10 years. And that, in some ways, culminated in the Miami Herald series. And it's also true that we have had a huge growth in the Medicaid population in assisted living in Florida. Now, you mentioned, I think, Senator, there's about 130,000 people-- maybe, Barbara, it's more than that at this point, because we've got somewhere in the neighborhood of 30,000 Medicaid supported people in assisted living in Florida. If you count the waivers, if you count the Assisted Services State Plan Program, it's getting over 30,000 in one state. So, you know---- Senator Nelson. That's because there are a lot more assisted living in Florida, proportionately. Dr. Polivka. And there's been this huge growth in 10 years. So with that as kind of the basis of concern and interest, the work group was formed by Governor Scott. It has 15 members. I am chair. And I think there's been some concern about representation, but we've had two meetings, and in my judgment, based on the discussion that has occurred within that work group and the interaction with the people providing public testimony, it's pretty representative, in my judgment. We'll see. I mean, we'll see what the outcome is over the next two weeks. The mission was essentially to address any area that the work group decided was important, especially in response to some of the findings from the Miami Herald article related to the question of whether or not we have adequate rules and regs, sufficiency of enforcement, adequacy of qualifications and training among providers and administrators in assisted living. We're covering about 14 areas, and that's over a three-month period. In terms of current status, as I mentioned, we've had two meetings. We've had many, many hours of public testimony that's been very useful in the forming. We have our last meeting Monday and Tuesday in Miami where we're going to consider a range of recommendations that we're going to report for the governor and the legislature by the end of November for consideration in the session that begins in January. I have included, I think, in the materials that your staff has disseminated a number of recommendations that I'm making as a member of the work group--as just one member. We'll see what the other folks come up with. As a matter of fact, you can see them as of this morning. There are 14 or 15 pages of recommendations that are coming from work group members and from other organizations that are on the Medicaid web site in Florida since this morning, if you want to take a look at them. I am also suggesting, though, that we have a Phase 2 of the work group. We have really had to scramble to cover areas that we thought were of most critical concern for the short term since August. There are a number of other issues that we have not had enough time to really address thoroughly and effectively, one of which, in my judgment, is do we have the right regulatory scheme in place in Florida. It has been my perception--and it's spelled out in an issue paper that I sent to the staff earlier today from 2006--that while we really need to detect and rid the system of chronically poor performers in assisted living, I think we also need to take a somewhat different approach when it comes to dealing with the regulation of most providers in assisted living. And sometimes that's referred to as a collaborative consultative approach. I refer to it as a collaborative consultative approach with a hammer, as far as bad performers are concerned. And I would hope that we would have a chance in Phase 2 of the work group to look at this broader regulatory picture, because assisted living is an enormous resource. It's incredibly valuable, and, if anything, it's going to be more valuable 10 years from now than it is today. But we can't afford to have the whole thing undermined by 5 or 10 percent of the providers who are not performing and are not being regulated effectively. Senator Nelson. And later on, when we get into questions-- if you'll share some of your recommendations. Thank you. Mr. Navas. STATEMENT OF ALFREDO NAVAS, PRIVATE CITIZEN, CUTLER BAY, FL Mr. Navas. Honorable Chairman and committee members, thank you for inviting me to share with you and the public the terrible, terrible accident due to negligence suffered by my mother. My name is Alfredo Navas. I am the youngest son of Aurora Navas. She was 85 years old when she accidentally died due to negligence at an assisted living facility in Miami, Florida. My mom was always a hard-working lady. She was a strong lady. She was the pillar of our family. But she also had some weaknesses, which--as I speak to you, you'll realize why some of these things just don't add up. She was always--and I remember as a child how scared she was of water. She would panic when my kids would be in the pool playing. She would panic when we went to the beach. And as she got older, later on in life, she was also very afraid of being in the dark. Even though she lived alone, she had night lights in every room so she was never in the dark. After she became ill with this horrible disease of Alzheimer's, she was placed in an assisted living facility in Miami, Florida, where my sister lived. This made it convenient for her to visit her regularly. I lived in Tampa, so I had to commute and travel to see her as often as I could. And it was very difficult for my brother living in the panhandle. But the first time, I remember, when I visited the facility, I walked in, and I wanted to make sure that my mother was in a good facility. I looked at the cleanliness. I looked up as I walked in. There was a camera there that would capture the entire movement of that home from that single position. Nobody could come out of the bedrooms, nobody could come in from the outside, nobody could move into the television room or the dining room or the kitchen or the living room or the back room without passing in front of that camera. There was also a safety gate on the kitchen, where nobody could go in the kitchen other than the people working there. I also noticed the lake in the back. You could see the lake from inside the home, and I was concerned. I've heard of accidental drownings before, and I've read those in the newspapers, and I inquired about that. And I was told there's absolutely no way that they can get out there because the gates are locked. I saw that the facility wasn't locked. Obviously, this was during the late afternoon hours, when I was able to visit, because that's the time when dinner was served and they were back from the activities that they did during the day. And I noticed the double door--the double knobs on the door. I inquired about that. Why is the facility open? Anybody can walk in. I was told, ``Well, those are safety features that we have on the doors. There's two knobs. One turns to the left and one turns to the right, and that's a safety, and we cannot lock the doors because of fire code regulations.'' I was also informed that they had alarms on the doors that they would set after a certain time of the night, that if anybody opened it, they would go off. Well, unfortunately, about--the very early morning hours of January 27th, I received a very, very disturbing phone call from my sister. She was in a panic. She said that there was a terrible accident at the home and that mom had passed away. I couldn't believe this. It can't be. So I rushed over there, and as I got there, just--reality sets in. Everything is taped off. We can't go in. The police are not telling us anything. So we had to wait. It was a dark, dreary, moist, and cold January morning, and I'll never forget it. I had a jacket on. We even had to sit in the cars with our heaters. It was so cold. Well, after we saw the coroner's van come in and take my mother's body away, a police detective approached us and told us that--well, he walked us into the facility, into the entry way and told us what had happened, that mom had drowned in the lake, that she had walked out and she had drowned. And from his perspective, it was clear negligence, based on the fact that the alarm on the doors wasn't set, the gates weren't locked. But there were a lot of questions raised after we received the reports. Now, we didn't get anything from any of the government agencies. We didn't get a report from the police. We didn't get an autopsy report. Nobody called us. So we named a lawyer, and through the lawyer, we managed to get copies of all the reports. And all that did was raise a million questions. My mother's slipper was found in the kitchen on the floor. She went through those double door--with double handle doors. The alarm didn't go off. There was no rails on the two steps coming off the back of--the side of the home. My mother needed assistance to get into my car, in and out, but she managed to walk out in her nightgown on a very cold night, go at least 75 feet to the gate. Her second slipper was found by the lake, and then they found her in 16 inches of water where she drowned. The autopsy reports--this is a drainage pond, as I call it, for the neighborhood, for the subdivision. And knowing how those drainage ponds are, as soon as you walk in, the mud and the silt and all of that gets disturbed, much less falling in, drowning--if I was drowning, I'd be flailing, and that mud would be stirred up. My mother had clean water in her stomach but not in her lungs. So it raised a lot of questions. We never received anything from the police, absolutely nothing. I know the--we find out that AHCA, which is the state agency that regulates the healthcare facilities in Florida, never even investigated. So my questions are: How can a homicide detective conclude it was clear negligence and never pass it on to the state's attorney for further investigation? And where is AHCA? How is that connected to the legal side? We did file a civil suit. We settled, but to my shock and amazement, Florida law requires a $25,000 policy for these regulators--these facility operators. It required a small air conditioning contractor to carry $250,000 liability insurance. And an air conditioning contractor does not deal with people's lives. These operators deal with people's lives. They've taken people's lives due to their negligence, yet we have a big disconnect, big disparity--and I apologize. I think I'm going over quite a bit. But I'm real disappointed in AHCA. I am very, very grateful to the Miami Herald for bringing all these abuses, this neglect, to the forefront and making our communities aware and making you, our elected officials, aware that we have a great problem in Florida and most likely in every state where ALFs operate. I'm not saying that all are bad. But our senior community is growing by leaps and bounds as we, including myself, will be considered a senior person here in a few years, if not already. Senator Nelson. Thank you, Mr. Navas. Mr. Navas. Thank you. [The prepared statement of Alfredo Navas appears in the Appendix on page 58.] Senator Nelson. Thank you very much for your very heartfelt testimony. Mr. Maag. STATEMENT OF STEVE MAAG, J.D., DIRECTOR, RESIDENTIAL COMMUNITIES, LEADING AGE, WASHINGTON, DC Mr. Maag. Thank you, Chairman Kohl, Ranking Member Senator Corker, Senator Nelson, and Senator Manchin. I have submitted my written testimony. I'll briefly summarize that for the committee. Leading Age, formerly AAHSA, represents almost 5,700 not- for-profit members who provide care and services to over 1 million seniors on a daily basis. Many of our members provide services which would fall under the broad category of assisted living. And I'm here today to provide the perspective of our members and other assisted living providers on the issues the committee is exploring. First and foremost, I want to state that while I'm not personally familiar with the circumstances detailed in the Miami Herald, members of Leading Age and all assisted living providers across the country were horrified to read the examples of the terrible care cited in the articles. I can assure you that the vast majority of assisted living providers work very hard to provide excellent care to their residents they serve, and the circumstances cited in the articles are the exception. I'll address two issues: quality of care and consumer disclosure. As assisted living has become a larger player in the array of long-term care services for seniors, the efforts to improve care have increased as well. The information, educational opportunities, and resources available to assisted living providers are far greater than I could begin to list. However, I would like to highlight a few. The provider associations have long been working with their members to provide them with education, resources, and tools to improve quality care and services. Leading Age's own Quality First is an example. Quality First is a comprehensive plan many of our members use to maintain excellence in care and services. Other examples are the National Center for Assisted Living's Guiding Principles for Assisting Living and Quality Performance in Assisted Living and the Assisted Living Federation of America's Care Principles. I would be remiss and would incur the wrath of my fellow board members if I didn't also highlight the Center for Excellence in Assisted Living. CEAL is the outgrowth of the efforts of this committee, as the senator mentioned, 10 years ago which resulted in the Assisted Living Work Group. CEAL was formed in 2004 and comprises 11 stakeholder organizations. We also have an advisory council of 27 additional stakeholders, federal agencies, and individuals which serves as a resource for CEAL. The mission of CEAL is to foster high-quality assisted living by bringing together diverse stakeholders to bridge research, policy, and practice; facilitate quality improvements in assisted living; identify gaps in research and promote research to support quality practices; and promote access to high-quality assisted living for low and moderate income seniors. The accomplishments of CEAL over the last seven years are too numerous to list. But they include establishing an information clearing house with almost 800 discreet items on almost every aspect of assisted living; developing the Excellence in Assisted Living Awards to highlight and disseminate best practices in five different practice areas; publish--and publishing last summer ``The Person Centered Care in Assisted Living: An Information Guide.'' Lastly, I should also point out that there are resources directed at consumers of assisted living services, the residents and their families. One such is the Consumer Consortium on Assisted Living. Their web site has a huge amount of information, all geared to the consumer. I would suggest the use of these resources may have prevented the quality of care issues raised by the Miami Herald. While I recognize some officials may look to more regulation to address the bad acts of providers, I urge the committee and others not to look for more regulation. For those few providers who do have quality of care issues, state licensure officials should use the authority they already have to require poor performing communities to seek and implement the programs and resources that they need to raise their level of care to that of the rest of the assisted living providers. I'd like to note that Wisconsin, Senator Kohl, has done an excellent job in advancing that perspective. Now, I'm not naive enough and I've got enough gray hair to understand that there--and not to suggest that there isn't a major role for regulatory oversight in assisted living. It already occurs in all 50 states, and Leading Age and the other provider associations strongly support regulatory frameworks. I recognize there are occasional quality of care concerns in assisted living communities in all parts of the country. However, my experience and the experience of many in the long- term care services and support sector have not seen additional regulation as the best way to improve quality of care. Turning to consumer awareness and disclosure, there's clearly a need for increased resources for consumers to understand what assisted living is and is not, as well as an understanding of which assisted living provider may be right for them or their loved ones. They often lump assisted living in with nursing homes. They are distinctly different, as we all know. States are taking significant steps to address consumer issues. Thirty-seven states have some form of disclosure statement or requirement for the assisted living provider to make information available to prospective residents and their families. Forty-nine states have regulatory requirements for residency agreements mandating that they contain certain consumer protections. Several states have web-based information. There's many organizations I've previously mentioned, such as CCAL, which have a wealth of information, and there's also commercial sources, such as Snap for Seniors and New Life Styles. This is one area where we think that providers, state regulators, and agencies like the U.S. Administration on Aging and the Office of Long-Term Care Ombudsman Program could work together to find ways to increase consumer awareness. Better educated consumers are in everybody's best interest and is something that the provider community strongly supports. Lastly, an example of this kind of effort is the Assisted Living Disclosure Collaborative that the Agency for Healthcare Research and Quality launched three years ago in conjunction with CEAL. This collaborative brought together almost 30 stakeholders and technical experts in an effort to create a uniform disclosure tool which could be used by consumers, state agencies, and others to inform consumers about the services provided at an individual assisted living community. The goal is to have an easy to understand method to compare the services and amenities of one assisted living community to another in a standardized format. This disclosure tool has been developed and will be undergoing field testing in eight states and in over 100 communities after OMB clearance. Thank you for this opportunity to testify on these important issues. [The prepared statement of Steve Maag appears in the Appendix on page 62.] Senator Nelson. Thank you, Mr. Maag. Mr. Jenkens. STATEMENT OF ROBERT JENKENS, DIRECTOR, GREEN HOUSE PROJECT, NCB CAPITAL IMPACT, ARLINGTON, VA Mr. Jenkens. Thank you, Senator Nelson, Chairman Kohl, Ranking Member Corker, and other members of the committee. As Senator Nelson mentioned, I am the Director of the Green House Project, a partnership between NCB Capital Impact, the Robert Wood Johnson Foundation, Dr. Bill Thomas, and the pioneering states and providers who have joined with us. The Green House Project assists organizations to implement a radically different approach to long-term care, one that truly operationalizes the founding values of assisted living, autonomy, dignity, and privacy. Prior to the Green House Project, I directed the Coming Home Program. The Coming Home Program worked with nine state partners to implement and refine Medicaid waiver regulatory and housing finance programs for assisted living projects serving Medicaid eligible individuals. Through the Coming Home Program and the Green House Project, I have learned just how good assisted living can be. So how do we square the successes I have seen created through committed public-private partnerships with the horrific stories bravely brought to life by the Miami Herald? How can we think about these opposites and use the successes to inform us on how to prevent abuses without stifling innovation? Four observations from my experience: First, as the Miami Herald found, the incidents of significant abuse and neglect are limited to a small fraction of the providers operating in Florida. This is good, because it means that most organizations can be part of the solution. Second, the existing state complaint and review process appears not to have been followed or enforced. The Herald coverage suggests that if the complaints had been pursued, some of the worst outcomes may have been avoided. While the lack of enforcement is troubling, it means the elements of a solution may already be in place. Third, this regulatory failure and similar failures in other states suggest that financial and political pressures sometimes prevent the implementation of sound state quality assurance systems. This is an area where we can foster significant improvement. And, fourth, it's important to note that assisted living quality is not a federal or state versus provider problem. The providers and trade associations I work with daily are united in their calls for abuse and neglect to be punished swiftly and fully. This is motivated by their personal missions and business interests. This motivation is important because it means that their interests are largely aligned with consumers, regulators, and providers. So what should be done? Do we need more state action? Is there a different federal role needed? I think the answer to each of these questions is yes. I believe strongly that the goals of quality assurance, innovation, and cost effectiveness are not mutually exclusive. In fact, I think they are necessary complements and that we already have the overall state and federal regulatory framework in place that we need. We simply need to refine and bolster the framework to allow it to fulfill its intended purpose. My first recommendation is to refine the balance between state flexibility and accountability. Currently, the federal Medicaid waiver approval process allows states to propose quality standards and systems. While this is the right place to start, clear federal expectations should form the foundation of any state proposal. It's not enough to defer to a state's process entirely where federal funds are involved. To create appropriate guidelines, standards that make sense to advocates, consumers, and providers, the Centers for Medicare and Medicaid Services, CMS, should be asked to develop these guidelines through an inclusive stakeholder initiative. This stakeholder initiative should be modeled on the successful Assisted Living Work Group formed in response to this committee's challenge in 2001, or the more recent 2011 efforts of the successor organization, the Center for Excellence in Assisted Living. Building on the process and recommendations from both of these groups and with the assistance of a team of CMS advisors, strong guidelines could be developed over the next six months. At the direction of Congress, these guidelines could form the firm basis on which CMS evaluates, renews, and approves states' quality assurance proposals. My second recommendation is targeted at accountability. The severity and duration of the quality crisis uncovered by the Herald provides evidence that CMS's oversight role in the waiver program is not yet sufficient. We know this is not because CMS staff do not care enough, but rather because they lack the tools and resources to effectively monitor and enforce waiver performance. CMS does not have the necessary staff or structure to verify state quality assurance for home and community-based waivers. We need something more than we have. The work group brought together to develop guidelines could also make recommendations on a more effective federal monitoring and enforcement role, including intermediate sanctions. Congress could then elevate these recommendations--evaluate these recommendations and direct CMS to implement selected enhancements and provide additional funding as required to assure that beneficiaries of this essential industry do not suffer due to lax oversight. Thank you again for this opportunity to testify today. I look forward to your questions. [The prepared statement of Robert Jenkens appears in the Appendix on page 70.] Senator Nelson. Thank you, Mr. Jenkens. Mr. Chairman, since you have another commitment, we want to thank you for the privilege of holding this hearing. And we want to give special credit to the Miami Herald for the extensive three-part series that they did on this subject. Senator Corker. Senator Corker. Thank you, Mr. Chairman, Acting Chairman. I appreciate you bringing this to our attention and all of you for your contributions today. Mr. Navas, in particular, I thank you for coming and sharing your personal story. And, you know, it always makes a major difference in any of these hearings or in our offices when someone like you has been affected this way. So I thank you for having the courage to be here and for telling your story, and for all of you for your contributions. And it's really interesting--Mr. Jenkens' testimony here at the end, I guess, brings me to my first question, and I'll be brief with all of these. I used to be a commissioner of finance for the state of Tennessee and was constantly dealing with the waiver processes. And, you know, we wanted to--we were actually hugely progressive in doing a lot of things as it relates to covering people, but constantly having difficulties with CMS and the waiver process. And I understand, as he mentioned, that there's a lot of staffing issues and that kind of thing. Tennessee has sent you a letter recently, on August the 25th, requesting guidance on a maintenance of effort requirement in PPACA. And it's really holding them up from being able to move ahead for their long-term care efforts under something called TennCare Choices. Again, I think Tennessee has been a leader in many of these things. And I just was hoping you might let me know when you expect they might have a response, Ms. Edwards--really, right along the same lines of Mr. Jenkens' testimony. Ms. Edwards. Mr. Corker, I appreciate your question. Tennessee, in fact, is considered a national leader, particularly in terms of thinking about ways to make community- based services a first choice for individuals who need long- term services and supports. We've really admired the work they've done and the way they've done it in collaboration with their advocacy and stakeholder communities in the state. We hold them up as a model frequently. We are looking carefully at Tennessee's request. We do understand the urgency for them. We have a team of folks who are looking very hard, and the challenge is, of course, that the Affordable Care Act does have pretty specific provisions with regard to maintenance of effort. And because eligibility for long-term services is frequently intertwined with eligibility for Medicaid itself, there are issues that get raised in the proposals that Tennessee has put forward. I can't give you a specific date, but I will tell you it is a very high priority for us. We're working on it as we speak. And my boss, Cindy Mann, and others throughout the agency are very focused on this issue. So I think Tennessee will have an answer soon. Senator Corker. Thank you. And I appreciate your focus on that, which brings me to Mr. Polivka. There's been a movement to look at some greater regulation of assisted living within states. And yet at the same time, we constantly have this rub that exists. I mean, the federal government has regulations. It ends up, especially with good actors in states, in many ways holding them back from doing things that are better for their population they're trying to serve. And so I'm very resistant to that type of thing as a result. And back to the state of Florida, we heard the incident--I mean, what kind of state regulatory process does exist in the state of Florida? How focused is it? How powerful is it? How do you feel about the situation right now as it relates to assisted living in Florida? Dr. Polivka. I think that part of the problem was the one I mentioned earlier, that is, we--and that's everybody in the state, policy makers, providers, everybody, the media--have not paid as much attention to assisted living as we should have over the past several years. As the program grew, as it became much more common for people with Medicaid funding to be placed in assisted living, we didn't keep up with the process. The program grew. Some of the issues became more complicated, and there was not an adequate kind of policy regulatory response to those developments over a period of five to 10 years. I think that there has been a major upgrade in regulatory activity in AHCA, the Agency for Health Care Administration, which is the Medicaid program for Florida, over the last six months and especially since May and the Miami Herald series. I think it also comes in part with the new administration. Secretary--the new secretary has--began to prioritize enhanced regulation, or more effective regulation---- Senator Corker. Just for--they only give me a limited amount of time, and I very much---- Dr. Polivka. Sure. Senator Corker. I sort of got the history of it, but, apparently, there's not much of a regulatory process is what you're, I think, getting at. Dr. Polivka. No. I would say that it was not sufficient. And I would say that the effort has been accelerated over the past three months, four months, and that with the work group, it will be accelerated further in several significant ways. Senator Corker. And, again, not being critical in any way-- I know you all are new to the job. Is Governor Scott asking for federal regulation over assisted living in the state of Florida? Dr. Polivka. Not that I'm aware of. Senator Corker. And I would think there would be a lot of states that would not want to see that happen. I know there is, again, through the application process, some things that CMS does in that regard. On the other hand, in Florida, it seems that a large part of your assisted living--or a portion of your assisted living population is actually younger people with mental illness, which is kind of unusual. Do you want to speak to that? Dr. Polivka. Yes. That was one of the issues I thought we might get to later in more detail. One of the major issues in the Miami Herald series related to what's called limited mental health license facilities. And somewhere in the neighborhood of maybe 40 percent of the people in assisted living who are publicly supported are people who have mental health issues. And those facilities seem to be at greater risk of problems of the kind that were described in the Miami Herald than ALFs that do not have people who have mental health problems and who have a limited mental health license. So my impression is that in the meeting Monday and Tuesday of next week, a good portion of our time and the recommendations will focus on those mental health residents and mental health license facilities. It's become one of the major housing options and has been for over 20 years for publicly supported people with mental health problems in Florida. I'm not sure how this is handled in other states, but you're right. It's a big issue in Florida and has been for a long time. Senator Corker. Mr. Chairman, thank you. Just in closing, I know Governor Scott, and he obviously was actually involved in Tennessee and was a provider to much of the Medicaid population there through the company that he was CEO of. But what happens, I guess, in states, if states don't do the things themselves that ought to be done--and it sounds like in the state of Florida--and, again, I know you all are new to the process and I'm not in any way casting blame on you. The state of Florida, it sounds like, has a lot of work to do. And when there ends up being especially such a high concentration of people, as the senator has mentioned, in assisted living, and then bad things happen, there happens to be sort of a whiplash effect in Washington, and Washington tends to want to then put in place federal regulations that sort of end up being one size fits all and can actually, in some cases, hurt the system, not help it. So I would hope that you guys would recognize that and would not cause actions in Florida to end up having negative activity, from my perspective, occur across the country. Dr. Polivka. Senator, we're working on that. We're doing our best. I'm optimistic about some of the changes, both short- term and longer-term. But we'll see what actually happens. And let me say that the recommendations that Robert made and that Barbara was talking about in terms of the CMS role, I think have lots of merit in terms of oversight and waiver approval and critique. There's real potential there. Senator Corker. Thank you. Thank you very much. Senator Nelson. I'm going to turn to Senator Manchin, former governor, who had to do this from his perspective as the chief executive. But we're picking up a thread here that these ALFs are really starting to take the place of nursing homes, it sounds like, in some of these, and that's not supposed to be the theory. The theory is supposed to be that there's independence of living, and that they just get assistance. We'll come back to that. Senator. Senator Manchin. Thank you, Mr. Chairman. And to follow up on what Senator Corker had been talking about in Tennessee--and being a former governor, we worked on all of these things. You're right. It's mostly up to the states or states' rights to take this responsibility, and it should be a moral responsibility. So West Virginia, I think, if I'm not mistaken, is the second largest concentration of aged people. I think Florida is first and we're second. And with that being said, we know that we have our challenges also. But I would just ask--and, Ms. Edwards, if you would--to a couple of these things here. Senator Corker makes a good point, and we're afraid, you know--we don't do anything ``a little bit'' up here. I've only been--I'm the newest guy on the block--one year. I can tell you when they want to make a change, it's a big change, and there's concern. So what happens sometimes--we might not do anything for the sake of trying to do too much. Now, with that being said, there's got to be a happy medium. But I can't understand why we can't at least have reporting. Is there registration? Is there licensing in Florida? I'm not sure if you all--since there's no Medicaid or Medicare money, do you have ombudsmen that go into these places that look at all these things? And I'm sure that you have a very active and aggressive trial lawyers association that watches you very close or watches this organization or these homes very close. Maybe that's the check and balance. I'm not sure. But we, basically, put them in categories, six or fewer, depending on the size of the homes that we had. As far as those growing more, we've had a moratorium on nursing homes for quite some time because the expense--and if you know, the expensive nursing home. And then when you look in most states, 80 percent of the occupants is paid through Medicaid. So, you know, people have learned how to divert their assets and their income, and they become wards of the state. That's why you haven't seen nursing homes flourishing and growing and expanding. So this is an alternative. But something's going to have to be done. And maybe from your standpoint, what you think we could--in a reasonable manner to get a better handle of what's happening right now. Ms. Edwards. Senator, I want to start by being clear that CMS does not have a position seeking additional federal oversight or additional licensure requirements at this point. What we are committed to doing is using the tools that we do have, as was mentioned earlier by another panelist, to do the best that we can to help states assure that people have good systems and people are being protected in terms of their health and their wellbeing. What we do in our waiver programs, which is where most of these services that Medicaid funds are funded through, is we ask states as a part of the application to tell us what the services are going to be--lots of flexibility in waivers, as you know--what the services are going to be, what the population that's targeted for those waiver services may be, where individuals can be and receive those services, what standards the state has established for those settings of care, and who the providers can be of those services and what standards the state has set for those providers. What we even require states to do is to report to us on how they are overseeing their own system of oversight and regulation. We ask states to do sampling of members who are receiving services; to report on whether or not people are getting level of care determinations; whether or not they have a plan of care; whether or not that plan of care is being followed; whether or not there are instances of abuse and neglect and, if so, how has the state responded to that. So we are---- Senator Manchin. What are you able to do as far as---- Ms. Edwards [continuing]. Asking for reports. Senator Manchin. But what is the hammer? You've got the carrot. What's the--you don't have a carrot or a hammer. Ms. Edwards. You've put your finger on it. In fact, the only real hammer that Medicaid has is to deny the waiver. So we can--we could--quit funding the services. We have found that to be--I mean, most states want to do a good job. So states are usually willing to work with us, develop plans of correction if they find problems in their system or if we find them. But we really don't have a lot of interim steps. One of the things that we have proposed in a Notice of Proposed Rulemaking that went out in April was to create some additional intermediate steps that we could take if, in fact, states are not coming to the table in good intention to make corrections. For example, withholding some funds for the waiver program, all of them, that sort of thing ---- Senator Manchin. Let me ask this question, because we're running out of time. I'm so sorry, but we're going to be running out of time. Like in our state, if we know that someone is Medicaid eligible, and they're not really nursing home needed--they don't have the need of a nursing home, skilled-- but they need that assisted living, we will offset the difference in our state, because it's much more, I think, the right thing to do, and it's much more cost effective for us to do that. I don't know if other states are doing that or they'd like to do that, to pay the difference and help Medicaid. Ms. Edwards. Very popular--some states will pay the difference. You're talking about room and board, I think. Senator Manchin. Right. Ms. Edwards. You're helping to subsidize the cost of room and board. Senator Manchin. Yes. Ms. Edwards. It varies widely across the state whether or not there is any subsidy available. Senator Manchin. Let me just say this. I just want to applaud Senator Nelson, because I know with his state and the aged population--and he's concerned about Florida. I can tell you that. We talk about it every day--but bringing this to our attention, because we all face it, and we're going to be facing it in greater numbers than we've ever faced it before. I think there's thousands of people going into the need of care on a daily basis. We're all growing a little older every day. That's the good part. The next part is we need someone to help us. So with that, if we could find something--and, Senator, I applaud--and I'd work with you--that doesn't overreach, but basically gives a guideline of just moral care, and it gives you all the ability to go in. If you send an ombudsman in, what do they report back to, and what can they do, other than saying, ``We think there's a problem here.'' And if I can--if I may--are you able to pull a license from an assisted--in Florida right now, if you find that the person is not--I know with the sprinkling systems and if they're able to have access and things of that sort--but what allows you--I mean, could you toughen that up a little bit there, to pull a license if needed? Dr. Polivka. Yes, sir. That is an issue, in fact, that we'll be discussing Monday and Tuesday. It's an issue related to how much discretion should the regulator have. There needs to be some, but it's a balancing act. And I think that there will probably be a recommendation or two that may be adopted by the work group related to reducing discretion on the part of regulators, especially in cases of egregious injury or death in a facility that would lead to quick revocation--if not immediate, then within a time frame with some appeal, but it would occur fast. That has not been the case so far. This may be something that we need at this point. Senator Manchin. Thank you, Mr. Chairman. Senator Nelson. Well, the states ought to have the regulatory authority to enact whatever action under state law that they deem appropriate to correct a particular activity. Licenses is certainly one. But there's a multiplicity of other things through the state agencies that oversee these institutions. Now, what is so revealing in the Miami Herald article is example after example of egregious conduct on the part of the facilities, and some of them didn't even get a slap on the wrist. And from the federal standpoint, we require an ombudsman, but the ombudsman is under, basically, the authority of the governor. And so even though there is a watchdog that the federal government requires, what that watchdog does is entirely up to the state. So we need to get this out in the open. And I'm going to get to the disclosure in a minute, Mr. Navas. But let me first turn to Senator Whitehouse. Senator Whitehouse. Thank you, Chairman. I appreciate very much that you are holding this hearing. It's a pleasure to be sitting next to Senator Nelson. We sat next to each other for four years on the Intelligence Committee, and I had the chance there to see how extremely tenacious the senator could be when the interests of a Florida constituent were at stake. There was a family that had--a Florida family that had lost an individual, and some of our intelligence services were facilitating the search for and efforts to rescue that individual. And watching Senator Nelson at work, pounding on the Intelligence Committee to make sure they left no stone unturned and did every conceivable thing they could to help this family, was a good lesson for a new senator on how hard to fight for constituents. I know this is part of that tradition. I appreciate it, Bill. Ms. Edwards, there is not much regulatory authority here for the federal government. There are under Section 1915(c), I believe, something called quality improvement strategies. I believe that's a feature of the Affordable Care Act, if I'm not mistaken. How useful is that tool at addressing a problem like this? Or do you come back to what we were talking about just a moment ago, which is that the only hammer is just statewide, the waiver itself, and so it's one that you really can't use with any precision? Ms. Edwards. Thank you, Senator. The quality improvement strategy that's a part of the 1915(c) program, as you noted, is something we actually developed collaboratively with states and began using back in 2002. There is a new requirement for Medicaid to pursue quality improvement strategies more broadly that was a feature of the Affordable Care Act, and the center will be doing more work in that arena over the coming years. We find the use of a quality improvement strategy is really about paying attention to the health of the system that's in place. We ask states to identify how they are making--how they are going to assure that people have health and--or that their health and welfare is protected, that their level of care is determined, that the providers meet the qualifications the state has established for them, and so forth. States do sampling. States report to us. And from that report, we work with the state at renewal to determine whether or not the state has met its obligations or not to have the waiver renewed. Senator Whitehouse. That's operating at a level of---- Ms. Edwards. It is not useful to deal with a specific assisted living facility that might not be meeting its state licensure requirements. Senator Whitehouse. It's system-wide rather than---- Ms. Edwards. It's a system-wide issue. That's right, sir. Senator Whitehouse [continuing]. Institution by institution. Ms. Edwards. Right. Senator Whitehouse. Well, the federal government probably ends up picking up a measure of cost when there are problems like this, not in every case, of course, but where--because somebody has to be upgraded into a nursing home environment that CMS has to pay for, or for whatever reasons--we could end up at the federal level holding at least a piece of the bag from this problem. So I suspect it's something you look at fairly regularly. In terms of which state has what best practices for trying to encourage the best quality of care in assisted living facilities, are there any standouts that you would flag for us? Ms. Edwards. I think I am reluctant, Mr. Whitehouse, to actually recommend any states to you, because Medicaid's involvement with assisted living is really so narrowly focused that I think we really are not the experts on that. We certainly have--I think some states are doing a good job in their approach to their quality improvement strategy. We're actually committed right now to working with the states to actually do quality improvement on our quality improvement process. So we're examining that process right now and hope to work with states to better focus it and make it more effective. But I do think that--you know, I'd be happy to work with my staff and see if we could identify some states for the committee that we think are doing a particularly good job with quality improvement. We'd be happy to share that with you. Senator Whitehouse. That would be helpful. I'd appreciate it. Senator Whitehouse. Ms. Roherty, I'm from Rhode Island. In Rhode Island, our state regulation for these assisted living facilities has a section called ``Rights of Residents.'' And it lays out consumer rights for assisted living residents, including the right to be free from verbal, physical, and mental abuse; to have medical information protected; to have visitors at their discretion; and to have access to the state ombudsperson, among others. And you advocated here for a federal assisted living Bill of Rights. Would that--how would that relate to what we have in Rhode Island? Would you consider that to be the type of bill you are talking about? Ms. Roherty. As I said, about half the states have a similar thing to what Rhode Island has, and it would incorporate what Rhode Island has in place. I think that would be very helpful. Senator Whitehouse. I don't know if anybody knows the answer to this question. Is it customary in contracts for assisted living services for the providers to put into the contract requirements that people go to arbitration and so forth rather than--do you have to give up your rights to a jury as part of this ordinarily? We've had some hearings about how--you know, you try to get your cell phone contract, and it's take it or leave it, and you don't have any choice. And buried in the fine print is, ``Oh, and by the way, despite the fact that you're an American, despite the fact that the jury is in the Constitution and Bill of Rights not once but three times, congratulations, you just gave it up''--ditto with credit card agreements and various other consumer contracts. And I'm wondering if this falls into that same pitfall. Mr. Maag. Senator Whitehouse---- Senator Whitehouse. Mr. Maag. Mr. Maag [continuing]. I was an attorney representing providers in a prior life and had considerable experience with this. My experience with arbitration agreements is that it's been an evolving practice. And I think most provider associations and Leading Age certainly provides that arbitration is an acceptable option for a contract provision if all parties agree to it, and that there is full disclosure and they understand what the ramifications are. Arbitration, historically, as a preferred public policy is also something that can be the benefit to both consumers and providers in quicker resolution to issues, more certainty to issues, a much less expensive process. But having said that, we don't support a situation where the arbitration is a mandatory provision of the contract; it's something that's forced on consumers. We think that that should be a separate part of the admission agreement. And if the consumer decides that they don't feel comfortable signing an arbitration agreement, they shouldn't be required to and it shouldn't be a condition of the contract. Senator Whitehouse. Yes, that seems like a reasonable way to proceed. Clearly, there are benefits to arbitration, but it's the sort of thing that should only be undertaken knowingly, particularly given the history we've had in this country where the largest private arbitration firm proved to be a racket run specifically to defeat consumers and had to be shut down by the state attorneys general for that reason. So it's something to be watchful of, and I appreciate your attention to it. Thanks very much, Chairman. Thank you for your energy in this area. Senator Nelson. Lest, say, for Mr. Navas' testimony about the tragedy involving his mother, lest this hearing be too sanitized, I want to directly quote from this Miami Herald article so we know--and it's part of the record. And, of course, the Miami Herald article will be entered in the record as part of the record. But I just want everybody to hear this. ``One of them in the Panhandle was like a prison camp-- powerful tranquilizers, beating them. The conditions in the facility were not fit for a dog. Regulators had shut it down but then allowed it to keep open for five years with the continuous abuses. ``One woman was thrown to the ground, forced to sleep on the box springs because she had urinated on her covers. A 71- year-old woman wandered and drowned in a nearby pond. A 75- year-old Alzheimer's patient was torn apart by alligators after he wandered from his assisted living facility. ``A 74-year-old woman was bound for more than six hours and the restraints pulled so tightly they ripped into her skin and killed her. In Hialeah, a 71-year-old man with a mental illness died from burns after he was left in a bath tub filled with scalding water. The Agency for Health Care Administration had failed to monitor the shoddy operators. ``A resident was eating from a filthy food bin. Four inches of dirt was on the floor of a dorm room, and six residents were drugged on tranquilizers without doctor's orders. And after this five years, one of those--he was given a year to find a buyer. ``Another one cramped in a dirty bedroom. They didn't give him food. They didn't give him water. They never gave him the medicine that would have saved his life. Another one vomiting and defecating in his bed--refusing to clean him because the stench was too strong. Despite the pleas from the other residents that he desperately needed help, caretakers never called the paramedics to try to save his life. ``At one called Hillandale, punishment was swift and painful--violent take-downs, powerful tranquilizers that made them stumble and drool. And the staffers would scream and tackle them when they misbehaved. The worst was the closet, a cramped room at the end of the hallway where the residents who were deemed unruly were locked sometimes for hours. ``And at one point, when the staff protested the removal of a 47-year-old man, the residents shouted and blocked the path for him to leave. And it took them calling the sheriff's office to clear a path and break up the crowd in order to allow him to leave the facility.'' Now, I mean, it keeps going on and on. And, of course, we can point out to the fact that this is just a minor, minor percentage. But this is America in the year 2011, and these kinds of things shouldn't be happening. Mr. Navas, what kind of information would have helped your family pick a good assisted living facility? Mr. Navas. Senator Nelson, I'm not sure what kind of information would have really assisted us. My sister is the one that went through the selection process. I believe that a friend of hers that works for the Department of Children and Family had recommended this facility. But as we looked into this matter of these facility issues deeper, we found that this particular operator has nine licenses under--each license is under a different corporation. They also move all their personal assets to trusts, and lawyers are--I heard a gentleman to my left here mention that. And it was very difficult for us to find any lawyer to take it, because once there's a trust in place, and the law requires a minimum policy of--insurance policy, there's no money for the lawyers. Senator Nelson. So there were no assets to go after. There was only a $35,000 insurance policy? Mr. Navas. Twenty-five thousand---- Senator Nelson. Twenty-five. Mr. Navas [continuing]. Is the minimum for Florida for these operators. Senator Nelson. And you did not know that as a piece of information---- Mr. Navas. No, I---- Senator Nelson [continuing]. Having put your mother there. Mr. Navas. No, and we weren't looking at those things because---- Senator Nelson. Sure. Sure. Mr. Navas [continuing]. We weren't expecting anything to happen. But the worst that I see happening--and I apologize because I see it here also. I'm a former administrator in a private corporation, and our solution is funding, funding, and funding. Well, some of them--many of the incidents that you mentioned, Senator, in the Miami Herald were five, six, seven years ago when funding was at its heydays in every state. Our economy has only gone downhill here in the last few years. So what happened there? Senator Nelson. When you were making a decision to go in that particular home, you said that you went and visited, and it looked fairly good. Would you have--had you wanted to inquire as to the quality of that place, would you have known at the time how to go about getting the information to determine the quality? Mr. Navas. Not at all. Not at all. I know my sister signed a contract with the operator. But in there, I don't believe there's anywhere--or any information to say you can research this operator or this licensing through this agency. And in the case of Florida, it's AHCA, or the Agency for Health Care Administration. And---- Senator Nelson. In any of your experiences, have you ever seen this taken to a prosecution? Have the state attorneys ever gotten involved in any of the states that you all have an experience with? Mr. Maag. Senator, there have been a few cases where attorneys--it's more likely a local prosecuting attorney has taken an action like that. I'm originally from the state of Washington, and I do know of a few examples in that state. The difficulty, obviously, is the burden of proof and the evidentiary standards for a criminal prosecution. But it has become more common, and many more state prosecuting attorneys' offices and local district offices are looking at elder abuse situations, including these kind of circumstances, and becoming much more proactive across the country. Senator Nelson. Ms. Edwards, could you give us some more details on the health and welfare assurances that states provide to CMS? Ms. Edwards. Senator, we ask for states to tell us what their standards are in their state; to identify who the providers are for the services that they're identifying; what the licensure standards are for those providers or training or credentialing, depending upon what the service is--they're not all facilities--telling us where people can receive services and if they have standards for those settings of care. Whether it's an assisted living facility, a group home--it might be in a school, it might be in the work place--are there, in fact, standards and what do they look like. We ask states to assure that people have a person centered plan of care that works with that individual--and the individual chooses to say what they need and how they would prefer to get those services--and deals with mitigating risk for individuals. We ask that individuals have a proper assessment of their need, and we ask states to assure us that they have oversight of the standards that they have established. Who is the licensing agency? What's their responsibility? How often are reports made? We ask for sampling of participants to assure that the assurances the states have given us are, in fact, happening. And we work with states if we find shortfalls. States are expected, in fact, to identify for themselves where they have shortfalls and to put corrective action in place to prevent abuse and to improve their own systems. That's the expectation. And, obviously, because states have a lot of flexibility in what their standards are, we see variation across the states. Senator Nelson. You list a litany of questions that you ask. And with regard to action, you mentioned one thing. You said, ``We work with the states.'' Describe that. And do you have any other things that you can do if a state isn't living up to its assurances? Ms. Edwards. Senator, we have--we require from states corrective action plans if there is a shortfall that is identified, and we offer technical assistance to states. We have a national contractor that works with states on their quality improvement programs, and they will literally go onsite to states to help them in improving their programs. We offer technical assistance at the staff level. As I mentioned earlier to Mr. Manchin, we don't have a lot of sanctions available, interim sanctions. Ultimately, what we can do is refuse the waiver. We can terminate or non-renew a waiver and stop all the funding that's flowing to the individuals that are being supported. It's sort of a nuclear option. And so we would like to have additional sanctions when states are not aggressively pursuing corrective action. We don't think it would be used often, but we would like to have them when we need them. We have proposed in a regulatory--in an NPRM that we have the ability to, for example, put a moratorium on more people moving into a waiver program if a state's quality assurance is not sufficient and even to withhold funding for administrative--or a portion of the funding that goes to the state, rather than all or nothing, as a way of getting---- Senator Nelson. You don't have that option? Ms. Edwards. We do not have those options. Senator Nelson. It's either all or nothing. Ms. Edwards. Yes, sir. Senator Nelson. And it's all or nothing, not with regard to a specific ALF, but with regard to the entire funding going to that state. Ms. Edwards. All of the individuals receiving waiver services would lose that waiver support if we deny or terminated the waiver. So it is a very difficult tool to use. Senator Nelson. Well, you do have the bully pulpit. Ms. Edwards. Yes, sir. Senator Nelson. A bully pulpit that was filled by the Miami Herald, I might say. Ms. Edwards. Yes. Senator Nelson. How do you use the bully pulpit? Ms. Edwards. We are probably more subtle than the Miami Herald in our interventions, and---- Senator Nelson. Well, obviously. Ms. Edwards [continuing]. There's a role for both of those things. I will say that when we received a copy of the Miami Herald article--which was, by the way, forwarded to us by the Office of Civil Rights at Health and Human Services--we immediately contacted the state. Our regional office and our central office team--we have a protocol for responding to those kinds of situations, whether they come in the paper or they come from a consumer or come from our inspectors. And we talked with high-level state officials within a couple of days of those articles to ask for more detail about what the state was doing to respond to those situations, how the state had handled those situations at the time, and within a couple of days had sent a written response to the state for detail. And the state did report back to us on their activities to respond. We actually view this as still an open issue with the state and are continuing to gather information. We believe the state has taken responsive action to investigate and to, in fact, do the kind of systemic review that's been described here. That's exactly what we want to see. And so we are continuing to monitor what the state is doing and continuing to offer assistance, but also continuing to encourage the state to be assertive and aggressive in its efforts to assure that its systems are adequate. Senator Nelson. Isn't this the purpose of an ombudsman? We require an ombudsman. I haven't heard anywhere in this that the ombudsman says there's something rotten in Denmark and start pointing the finger. What's their role? Ms. Edwards. Senator, I hate to say this, but the ombudsman is not a CMS responsibility, and so I really don't feel like I'm in the position to speak---- Senator Nelson. It's a state responsibility. Ms. Edwards. Well, there is an Administration on Aging program for the ombudsman. Martha might actually be able to say more about it than I can. Senator Nelson. Ms. Roherty. Ms. Roherty. I can address it. Our state agencies on aging have the ombudsman program underneath them, although they are supposed to act outside of the agency because they do represent the consumer voice. And they are supposed to draw attention to it, and they frequently do at the ire of the governor. I understand they do report to the governors. But I can tell you from our experience, I've had many ombudsmen calling the media and reporting on abuses, and then the governor's office calls our--my commissioners and says, ``Why did you allow that to happen?'' That's their job. Their job is to look for these facilities, and that's---- Senator Nelson. Did Florida have one when all of these abuses that were chronicled by the Herald---- Ms. Roherty. Yes. Senator Nelson [continuing]. Happened? Ms. Roherty. Yes. Every state has a state ombudsman, and there is a federal funding stream from the administration down to the state. The problem---- Senator Nelson. Well, maybe we should have had that person here answering the questions. Why didn't they blow the whistle? Or why didn't they know? Is that the role of an ombudsman? Ms. Roherty. It is the role of the ombudsman, and I don't know why they're not here. But I can say that they're really under--it's a very underfunded program. There's a tiny amount of funding that states can use. And they were given most recently in the last reauthorization of the Older Americans Act this new population that they were supposed to go in and serve, which is the assisted living homes. And it grew so fast that it's very difficult to go in. I don't know the number in Florida offhand, but I would suspect it's fewer than 100 staff that have to go into all of these facilities. Senator Nelson. Dr. Polivka, you or someone said earlier that the trend is toward these ALFs from nursing homes under the theory, obviously, better quality of life, less expensive-- just like home health care. If you can have somebody taken care of in their home instead of having to go into a nursing home, it's cheaper, the quality of life is better, everybody's happier. It's a win-win-win. So if this is the trend, what we've heard here today are abuses that are even worse than we've heard about abuses in nursing homes. Tell us---- Dr. Polivka. Senator, let me respond quickly to the ombudsman issue. And I do not consider myself an expert on the ombudsman program, either nationally or within Florida. But I have learned some things about it since the work group began two months ago. And one thing that needs to be remembered is the ombudsman program is not a regulator--a regulatory program. They are to talk to residents. They are to express and convey the grievances and concerns of residents in facilities. And they've added the ALF. That's still a developing, maturing process, because that's a new kind of task for them that they're still adapting to. I am really concerned--and I expressed this, Senator, to the legislature in Florida, both the House and the Senate, back in March, as they talked about Medicaid reform, as they talked about moving towards a managed long-term care system, which is something I have tracked closely for about 20 years. I am concerned that as we move in that direction, and we look to contain costs in large measure by containing nursing home use and shifting more and more people into the community residential programs like assisted living, that if we're not careful, we're going to end up with something like a slightly less expensive nursing home, a slightly less regulated nursing home. And that's not going to, I think, meet the needs of anybody, either the residents, policy makers, families, or anybody else. That has--we have to keep a close eye on that possibility and keep it from happening. Senator Nelson. That's exactly the message that I've gotten here. I mean, I can't say it any better than you just said it. And, interestingly, if the ombudsman program is federal, setting up and giving to the states, and if it's supposed to be vital in advocating for the seniors, then is there an independence in reality for this ombudsman? And I'd like the record to reflect, and we will submit into the record a statement by Brian Lee, the Executive Director for Families for Better Care, who recently served as Florida's ombudsman. Senator Nelson. So what should we at the federal level do, in your judgment, in order to see that the ombudsmen can do their jobs more effectively so that these horror stories that we've heard about won't happen, and so that the vast majority of ALFs that are doing a good job don't get painted with the tar brush of all the bad ones? Ms. Roherty. I think that Larry's point is a very significant one, and that is that the ombudsman is only one part of the solution. It has to work in more of a systemic system in order for it to ensure quality and safety for the consumers. And I think it's--and sometimes you're going to end up calling in the Adult Protective Services if it gets that dire a situation. In most of the states, they also work with their survey and certification team, so if they're finding things, they're going to call in--the folks that do the regulatory findings--and advise the CMS folks of a real difficult thing. You can't just pick one program and expect them to do everything and fix this whole assisted living issue. Dr. Polivka. Senator, as a follow-on to Martha's point, I don't think we should expect the ombudsman program, either in current or some kind of revised form, to be a substitute or even a major add-on to the regulatory framework. They are there to be in touch with residents. They are there to convey information and occasionally to move information along if they spot something that is really a problem to either the Adult Protective Services or back to the regulatory agency. I think they need strengthening in playing that role. I think there needs to be a few more resources, and this may be something that the Congress will want to look at as you look at the Older Americans Act, which, I think, is on your agenda now. But I don't think it would be wise to think that the ombudsman program in any other form is going to deal with some of the regulatory issues we've been talking about here today in any definitive way. Mr. Jenkens. Senator, I'd like to add to that as well and really agree with Martha and Larry. I think the system we have in place depends on multiple checks and balances. The ombudsman program is one of those. But certainly the check and balance between state and federal is the other. And I think that what we know is we all--each of us need someone to hold us accountable to be better than we are ourselves. That happens in our lives. That happens between providers and state regulators. I worked for a multistate provider. We benefited by state regulators holding us to a higher standard. And I have seen the federal government play that role with states and providers as well. And I'd like to make a comment. Running a program that asks for an entirely different model to be implemented, which people believe is not possible under the current regulatory structure--I'd like to say that I have found federal regulators to be some of the most flexible and innovative regulators when we are implementing the Green House Project. And, in fact, they often help hold states to a higher standard of flexibility in interpretive guidance than we might get otherwise. So I don't think it's true that the federal government will squash innovation. But I think it's very important how we approach this and what that partnership looks like, including involving a very significant stakeholder group of providers and advocates to help find the right solution, which we've done before and I know we can do again. Senator Nelson. Well, on the basis of what we've seen in this newspaper report, the regulatory agency in this case--AHCA in the state of Florida, the Agency for Health Care Administration--wasn't doing its job. Mr. Jenkens. I would agree. Senator Nelson. So the laws weren't being enforced. Now, other than tuning up the ombudsman to blow the whistle, what do we do to get the states to enforce their laws? Mr. Jenkens. I think we need to give CMS many of the intermediate sanction opportunities that Barbara recommended, and we need to give them some funding to be more effective in playing that role. Senator Nelson. Mr. Maag, what do you think from your perspective? Mr. Maag. Well, I think, Senator, you did hit on at the beginning of that Miami Herald article when you talked about ``the regulators allowed''--and it is a matter of not coming up with new regulations but ensuring that the enforcement activities and the regulations that already exist in all the states are actually enforced. It's sometimes a resource allocation. I think CMS may play a role in that, because many of the states--you mentioned California earlier. One of the reasons that California has a four or five-year wait between inspections is simply a resource allocation issue that they've been facing, and they've chosen to not fund that aspect of the regulatory enforcement process as much as many of us would like to see. So I think that the role, as Robert said and as Larry said, of having, you know, the oversight to monitor that the states are, in fact, doing what they're supposed to do under their regulatory framework really is a key consideration. There is the tool there--there are the tools there. There are the enforcement mechanisms, and there are many states that are very aggressive and active in it. As I mentioned, Senator Kohl's home state of Wisconsin is a shining example of a very good regulatory framework, and I think we can use those examples to illustrate how--as a good practice that other states need to start to look at and make sure, by oversight, that they, in fact, are following those kinds of practices. Dr. Polivka. Senator---- Senator Nelson. Go ahead, Doctor. Dr. Polivka. As a follow-up in response to your question, I think that the thing--the work group is looking at at least three areas where we think we can move in the direction that you're talking about. One is limited discretion, possibly, in some decisions that can be made by the regulator, by AHCA. We have not--there's not a consensus on this, but it is being discussed, and it may be something that we will look at both next week and then longer term. We're very much interested in a progressive sanction kind of model, and it's one that Wisconsin has done a very good job, in my judgment, in looking at that up close over the last couple of months. The other is to get Adult Protective Services--I think Martha or Barbara mentioned--more involved in this. And we have a list of recommendations we're going to address on Tuesday regarding the relationship between Adult Protective Services, which is in a separate department from Medicaid--bringing them closer together so that they're much-- so that not only do they share information, but there's some accountability between those two organizations in terms of taking actions when a problem is identified. And the other one is involving the state's attorney's office and law enforcement. That's a bit tricky, and I think it was mentioned a minute ago in terms of problems with evidence and how you proceed with some of these cases. But we're looking at that very closely as well, because we think there's some potential there. There have been two or three cases where the attorneys general have been very effective in Florida in bringing actions. Mr. Jenkens. I think it would be also worth stating the obvious. This is not just a Florida problem. This could happen to any state in the United States. Senator Nelson. Well, let me ask you an essential question. Should CMS have the authority to shut down ALFs when chronic problems are occurring and state regulators have failed to act? Ms. Edwards. Senator, if I could at least start, I guess I would just remind all of us that CMS is not the principal payer in assisted living facilities. And there are probably many assisted living facilities across the country in which there are no Medicaid dollars coming at all. And so I'm not sure CMS has the right involvement with this industry, at least today, to be effective. Senator Nelson. But it sounds like on the testimony that more and more, there is Medicaid dollars going in ---- Ms. Edwards. But it could only be a very small portion, and we might find ourselves no longer welcome if we become the vehicle for all regulation. So I would just point out that at this point, there really is a very large assisted living industry. Right now, Medicaid's engagement with them is small, possibly growing. But I just want to keep that in perspective. Senator Nelson. Well, aren't some things blurring now between nursing homes and ALFs? Haven't we seen here today examples of complex medical services? People who have that need are being admitted to ALFs, whereas, normally, they would be admitted to a nursing home? Dr. Polivka. Senator---- Senator Nelson. So how do we prevent ALFs from becoming unregulated nursing homes? Dr. Polivka. As I mentioned, that's a concern that I and some of my colleagues in Florida have as well, Senator. I don't think at this point--and looking at data, because part of the operation that I administer includes a large data operation for the state of Florida and the Medicaid program. And what I have seen over the last 10 years and have seen as recently as 2010 is that there is a clear difference between the typical assisted living resident, Medicaid supported, and the typical nursing home resident, which is--and those residents have a tendency--or patients have a tendency to be more impaired, require significantly higher levels of care still. The issue, however, is that there is movement, and it's not just a creep, but steady movement towards the blurring that you're talking about, and that we do have at this point a substantial percentage of people in assisted living who would have been in nursing homes 10 or 15 years ago. That is something we need to be alert to in the way that I mentioned and that you talked about. Mr. Maag. And, Senator, I'd like to add--I don't think the assisted living would be considered unregulated nursing homes. They are a very regulated set of communities. The states that are moving forward on what we commonly call aging in place recognize that, and I can think of states like my home state of Washington, Oregon, some of the others who have allowed additional aging in place--have done that, recognizing that that heightens the awareness of what needs to be done to monitor those states. And they have done, by and large, a very good job of monitoring what goes on in those assisted living communities which choose to provide higher levels of care. Some assisted living communities don't believe that they have the proper qualifications to provide care to those types of residents, and so those residents aren't in those communities. But those who choose to provide that higher level of care are looked at and scrutinized, knowing that the risk is higher. Mr. Jenkens. And I would add, Senator, I think from my perspective it's important that the lines have become blurred. It's important that we give people options in where they can be served when they have a nursing home level of need. And some states have done a very good job as they've introduced Medicaid waiver programs, which require people to be nursing home eligible, in actually layering on a regulatory level or category within assisted living to deal with the additional needs around guarding against abuse and neglect and care. Arkansas is a terrific example of that. They introduced an Assisted Living II category when they introduced their Medicaid waiver program. So I think it's really a question of the system that fits the state, with some federal guidance and then some federal accountability to be sure that those pieces are in place. Ms. Roherty. Senator Nelson, can I just add on--one additional point is that one of the other parts, getting back to the whole system that is in place, if you take--separate out again from CMS and go over to the Administration on Aging, one of the things that is critical to putting--or having an individual choose which place is the proper place is to have options counseling through a third party information and referral specialist that can actually look at the options for the consumer and make sure that what facility they're choosing is going to best meet their needs. And oftentimes that's not happening. Frequently, individuals need it really quickly. They move from being able to stay at home without extra supports into a situation where, very quickly, they have to make a decision. And so having additional support of third party options counselors would be very helpful. Dr. Polivka. Senator, let me--I think that's a very good point, and the Congress and CMS and AOA have done a good job over the last several years in developing the Aging Adult and Disabled Adult Resource Centers that can provide that function and do in many states, including Florida. Let me just say, too, that there are a lot of people in assisted living who don't want to leave. And as they become more impaired, there's enormous pressure, but they don't want to leave. And many facilities are running a risk in keeping them there because they have become part of the family, possibly, so to speak, and it creates a really difficult dynamic related to all the issues that we're talking about. Mr. Jenkens. People also don't want to leave assisted living because the option of many nursing homes is not an option that they would choose. The institutional environment is tough. And Green House is trying to change that, but that's going to be a big and long change. So I do think we want to make options and choices work with appropriate oversight, given what providers are committing to. Ms. Edwards. Senator, if I could just add, again, a reminder that--because this is like ``welcome to how difficult this issue is''--is to remember that much of the movement toward home and community-based services, certainly in the Medicaid program, has, in fact, been driven by consumers themselves who have said, ``I don't want a nursing home. I don't want it because the quality of life there is not the quality of life that I want. ``I don't want to live in an institutional setting where I don't get to choose how I spend my day, who I spend my time with. I don't have the ability to take some risks in my own life, even though I prefer the quality of life if I can stay in my own home, if I can stay in my own apartment, if I can choose a less restrictive setting.'' And the movement has really been driven by consumers themselves who are saying, ``I want more choices. I want more autonomy and independence. And while I might be safer in another setting, that's not a quality of life that I want for myself or my loved one.'' And so part of the challenge here is trying to assure that as we work toward caring--being sure that people are well cared for and are not subject to abuse and neglect and the horror stories that we've heard today is also recognizing that what people don't want is to live in a nursing home if, in fact, they have other choices that can meet their needs. And so it's just a matter of keeping in mind that balance, or finding better models of oversight. Senator Nelson. Well, I want to thank all of you for a very lively discussion. I think it has enormously added to the repository of information of this committee. And let's see what we can do, at least, to make the suggestions to the states for the ombudsmen to be more effective, and, secondly, that because of the abuses that have been uncovered, albeit in a small, small percentage of the ALFs, that we find a better way at encouraging the states to take regulatory control of this problem and do what they should under their laws, that is, regulate so that the people's conditions are what the community at large would accept. And, of course, what the Miami Herald chronicled was not conditions that the community would accept at all--to the contrary, to the point of absolute shock and revulsion. Mr. Navas, I'm sorry you had to go through your personal experience. But you brought that personal experience here to this committee, and we are very, very grateful for that. Thank you, and the hearing is adjourned. [Whereupon, at 4:02 p.m., the hearing was adjourned.] APPENDIX
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