Joint Sunset CommitteeWednesday, March 15, 2006

Senate Chamber, Legislative Hall, DoverPublic Hearing: Council on Long Term Care Residents' Protection

Minutes_____________________________________________________________________________________

JSC and Staff: Sen. Marshall, Co-Chair; Rep. Oberle, Co-Chair; Sen. Bunting; Sen. Copeland; Sen. Sokola; Rep. Hudson; Rep. Mulrooney; Rep. Valihura; Rep. Viola; Debbie Puzzo, JSC Analyst; Marlynn Hedgecock, Sunset staff, Sean Finnigan, Senate Staff.

Absent: Sen. Bonini

Public in attendance: Carol Ellis, Division of Long Term Care Residents’ Protection (DLTCRP); John Thomas Murray, DLTCRP; Jean Marie McKinney, DLTCRP; Robert Smith, DLTCRP; Francis Monaghan, DLTCRP; Susan L. Sample, Kentmere; Kim Paugh, DLTCRP; Jennifer McLaughlin, occupational therapist; Cheryl Garber, occupational therapy student; Len Weiser, Shipley Manor; Sheri Workman, Shipley Manor; Joanne L. Conner, Harrison House; Kathleen Scott, Shipley Manor; Michelle S. Tuez, Shipley Manor; Daryl Levin, self; Amy Chambers, Shipley Manor; Bud D. Raney, Shipley Manor; Sandy Autman, self; Dawn Carr, self; Nelson Hill, Local 27; Mike Smith, Local 27; Marcia Crossland, DLTCRP; Meg Myers, FCIL; Kathy Rowe, FCIL; Raetta McCall, FCIL; Ann Newswanseer,; Pat Engelhardt, AARP; E. Fielding, AARP; M. Rosenthal, Mary Campbell Ctr.; Cheryl Keffer, self; Jennifer Brady, Potter, Anderson & Corroon for Shipley Manor; Donna Smits, Local 27; Rob Kratz, LTC Services, Retired; Susan Kleinfeldt, retired teacher; Sara Armstrong, self; Charles Moneyson, self; Robyn Wright, Home Health Corp of America; Cheryl Gallager, Modern Maturity; Steve Autman, SW; Lynne Autman Erbach, PBS; Jamie Wolf, self; Yrene E. Waldron, DHCFA; Beth Ewell, self; Joan Springer, self; Jean Hessler, self; Beth Miller, News Journal; Charles Welch, self; Albert W. Holmes, Jr., self; Ellen Manyozll, Kentmere; Les DelPizzo, Quality Insights of Delaware.

Agenda:I. WelcomeII. Approval of Minutes – February 22, 2006 Committee Hearing/DLTCRPIII. Public CommentIV. Adjournment

I. WelcomeSen. Marshall called the meeting to order at 5:50 pm.

Sen. Marshall stated the meeting was moved to the Senate Chamber to provide accommodations for all those in attendance. The Senator introduced the members of the Joint Sunset Committee (JSC).

Sen. Marshall explained that the JSC is charged with the responsibility to review and evaluate state agencies, The JSC reviews the statutory mission of the state agency, evaluates the strengths and weaknesses of that public agency, identifies any positive work of the agency, and also make recommendations for improvements to the agency if necessary.

Sen. Marshall commented that there are about 20 citizens who have signed up and volunteered to testify before the committee at this public hearing. The Senator requested that each witness limit their testimony to about 5 minutes and focus their testimony as it relates to the Division of Long Term Care Residents’ Protection (DLTCRP) and the mission of the DLTCRP.

Sen. Marshall stated that the statutory mission of the DLTCRP, is to provide and protect nursing home residents from abuse, neglect, and financial exploitation.

1

Rep. Oberle welcomed all in attendance and stated that it would be appropriate for the comments made tonight to address those deficiencies that you might have experienced at the Division level, or any positive experiences you have had with the Division. The purpose of this hearing is not to only hear negative comments. Rep. Oberle commented that this Committee takes the public testimony very seriously. This is the third in the series of hearings that the JSC has held on the DLTCRP. The JSC has received a lot of written testimony, a lot of verbal testimony, and after this evening, the JSC will continue the process of reviewing the information received to date.

II. Approval of Minutes – February 22, 2006 Committee Hearing, Division of Long Term Care Residents’ ProtectionThere was a motion to accept the minutes from the February 22, 2006 Committee hearing. The motion was seconded. A voice vote was taken. The motion was unanimously carried and the minutes were accepted.

III. Public CommentYrene WaldronSubmitted text (as read) follows:

Good evening, I am Yrene E. Waldron, a licensed Nursing Home Administrator, and the Executive Director of the Delaware Health Care Facilities Association for the last nine years. My health care experience spans over 25 years with 20 of those years being dedicated solely to Long Term Care. Our agency is an affiliate of the American Health Care Association and we are a non-profit organization that represents residents of the long term care community in Delaware including, for profit and non-profit skilled nursing facilities, assisted living facilities and continuing care retirement communities.

I thank the committee for this opportunity to comment today and want to clarify that I am not here on behalf of any specific provider, or any State agency with whom the profession interfaces daily, which are many. I am here as a long term care professional and as a family member whose grandmother died in December of 2005 after a 9 month stay in a Delaware long term care facility where she received excellent care.

Our association firmly believes that all stakeholders are working diligently to ensure the highest level of safe, quality care possible to our residents.

The American Health Care Association believes that there are more than 130,000 pages of Medicare and Medicaid rules and instructions for skilled nursing facilities and please note that this is just Federal regulations and does not include State regulations that must also be met. This overabundance of regulations and regulatory requirements is as burdensome to providers as it is to those charged with regulating the profession. Every regulation requires extensive documentation in order for a facility to remain in compliance. Documentation is based on an extraordinary amount of human assessment,” which is dependent on the judgment of nurses, physicians, and others.

Many of the issues that have been discussed during the course of these hearings; which I have been to, are not black and white issues and are subject to individual interpretation. Whether a patient outcome is avoidable or unavoidable for example, is often a hard call. If you ask three professionals their opinion, they may all agree or all disagree. Judgment calls are not spelled out in statute or regulation. They are made on a case by case basis by an individual or group of individuals with the best information available to them at the time.

For one health care professional to assert that her judgment or opinion is the only and always correct one should trouble this committee.

CMS, the Center for Medicare and Medicaid Services – the federal agency charged with Medicare and Medicaid Services Compliance and oversight of the Division of Long Term Care Resident’s Protection and all other State Survey Agencies has recognized this and is working with stakeholders nationwide as we speak to improve the broken and run-away system in place. They too, along with providers and Senator Grassley have finally recognized the problems

2

which have become inherent with the current system which has evolved over time at the Federal Level.

And indeed, the GAO report requested by Senator Charles Grassley and referred to by Ms. Roberts in her opening testimony, evaluated if CMS initiatives adequately addressed survey and oversight problems. The report identified key challenges to continued progress in resident health and safety and it also identified problems with the current survey process. Unlike Ms. Roberts assertion that the problems are unique to Delaware, the problematic results identified were fairly consistent across the country, whether the State Survey Agency Director was a nurse, a former nursing home administrator, a doctor or a professional business administrator. This would point to most reasonable observers that there is a systemic problem with the survey process, not with any one individual in any one State Agency or with providers at large.

The GAO report also recognized the more credible, measurable clinical outcome data tracked by CMS’s Nursing Home Quality Initiative (NHQI). Key findings from a two-year analysis of NHQI data showed dramatic improvements in several specific clinical outcome measures in long term care facilities. Many Delaware long term care facilities are working diligently with our QIO, Quality Insights of Delaware, in order to improve outcomes and to get back to “person directed care.”

We take our profession and the ever growing number of regulations and oversight very seriously. We are actively involved in the Quality First Program, with 86% of Delaware long term care facilities participating to improve the quality of care daily by ongoing self assessment of clinical and other best practices.

In conclusion, our message is straightforward. There really is a difference between the worm’s eye view of the bird, and the bird’s eye view of the worm. The system is subjective and complex for all. The regulated, the regulators and the regulator’s overseers or CMS. The system is managed by paper processes which are completed by “humans.” Human judgment, whether nursing or regulatory, will never be 100% accurate, 100% of the time. This is not because of any clandestine plot or intentional infraction by any individual, provider or agency. Facilities will never be able to provide the one on one care that families can provide. The reimbursement system in place does not allow for this and never will.

The continued bashing of regulatory agencies or providers, rather than constructive dialogue with all stakeholders at the table to improve the system is extremely disruptive and counterproductive to achieving the result we all want, which is improved and sustained quality care. Achieving sustained quality care can only be attained with a collaborative, outcomes-based approach rather than a punitive process that gives no best-practices counsel to providers.

No amount of regulation or laws prepares a family member to deal with the anxiety, fear and guilt that accompanies the placement of an elderly or disabled loved one in the care of virtual strangers. Nor does it prepare one to watch a loved one, who refuses to eat, by choice in most cases, to wither away from a vibrant, fun-loving and energetic person to a shell of a human being. I experienced just this scenario with my 95 year old grandmother who lived with my 77 year old mother until March of 2005. My grandmother had osteoporosis which caused her hip bone to fracture, causing her then to fall at my mother’s home. She was admitted to a LTC facility, due to her inability to walk and her growing dementia which became worse after surgery to pin her hip bone. She was admitted to Hospice Care at the facility at the family’s urging since she was clearly failing and in the end stage of her life. She chose to stop eating; the elderly often make this choice because they are tired of struggling and of being dependent, and because they are simply ready to go. No amount of intervention, coercing, cajoling, mood enhancing or appetite enhancing drugs could change the outcome for my grandmother. Family visited daily and attempted to feed her all meals, to no avail. My mother prepared her beloved ethnic Cuban food, pureed it and took it in to her daily. It did not make any difference. The elderly have choices, and my grandmother chose simply to stop eating, which brought about a host of other complications, including skin breakdown and her “unavoidable death.” It was not abuse; it was an unavoidable outcome due to her age and medical condition. She passed away peacefully with her family by her side on December 28th, 2005. Neither my family nor I were ready to see this lovely little giant go, but we respected her wishes and she died with dignity.

3

We did not seek to assign blame to the wonderful Hospice or facility staff that so lovingly cared for her through her decline, or to the system, as often happens when families are grieving.

Also, as a Health Care Administrator, I have dealt with many personnel issues. Often times an employee who feels his/her knowledge base or dedication has not been appropriately validated or appreciated, goes to extreme lengths to feel vindicated, making wild accusations, believing fully that they are true and that they are in the right when in fact they are not.

Laws and regulations exist as a system of checks and balances to monitor and ensure that nursing homes as well as hospitals, doctors and all health care stakeholders practice safe and quality health care. In Delaware, the DLTCRP regulates the LTC profession and in turn CMS regulates them. The system is designed to improve the delivery of care for everyone involved.

Every day nursing homes are visited by family members, friends, relatives and clergy- all of whom have several options available to express their concerns. Calls can be made to the Division, the State Ombudsman’s Office, the Attorney General’s office, CMS, Adult Protective Services and law enforcement authorities. Telephone numbers to register concerns are required by law to be conspicuously posted in every nursing facility and they are. They are also provided to families at admission. And by law, every incident must be self reported by providers for follow up.

We believe that there are close to 10,000 long term care employees in Delaware working in one capacity or another. These unsung heroes are the true advocates for the elderly in my book, not any one else. It is those that get up every day and go and serve in Delaware’s long term care facilities. They could have easier jobs, often paying more money, but they go to work in this field, because their work has become a mission and the greater majority does it extremely well, often neglecting their own families to take care of their extended family in the facilities. They certainly don’t get up in the morning and say, well, well, today I am going to go in to work and abuse and neglect someone….Having said that, if any professional, whether in long term care or not, violates a law, he or she should be held accountable.

We ask that you note that since 1997, we have seen a reduction of 435 licensed beds which actually relates to a reduction of 583 operating beds in Delaware when you factor in the State Facilities beds that are not in operation due to staff shortages, etc. While we all want to improve the quality of care in Delaware, if the punitive versus quality outcome oriented approach continues to persist, Delaware may well find itself without the necessary long term care beds or quality administrators for the fastest growing segment of the population.

The business of elder care is difficult and emotional. Every time we have a hearing or an “expose,” even if only based on allegations or innuendo, we cause a demoralizing ripple effect in the community that is harmful to all involved and does little to improve the quality of care or life of those in long term care.

We are driving truly dedicated, caring staff away from the profession. Do hold us to a reasonable and fair standard and work with us to improve continuously. That

should be the goal.Our collective mission should be to focus on continuous quality improvement regardless of

who we are: Legislators, Providers, Regulators, Families, or any other truly vested stakeholder. This can be accomplished only by working together to improve the system that exists today.

Our Association appreciates your individual and collective efforts as members of this committee and understands the challenges that confront you as elected officials. Your jobs are almost as difficult as ours. I know that your wisdom, ethics and integrity will help you focus on the big picture here and what is in the best interest of all will prevail. Thank you.

Sen. Marshall thanked Ms. Waldron for her comments. Sen. Marshall stated that Ms. Waldron has been an advocate and a spokesperson for the nursing home trade association and residents dating back to late 1997.The Senator stated that Ms. Waldron is very sincere and has a professional background. Sen. Marshall asked Ms. Waldron whether she considers the hearings that the JSC has conducted through today, with its findings and recommendations to be constructive, and if so, why?

4

Ms. Waldron said, “To be quite candid with you, Senator Marshall, I think the tone of the first two hearings was not constructive at all. A Joint Sunset review of an agency should be a joint sunset review of an agency. Instead, it turned out to be an attack, not only of the agency, which I thought was very unprofessional, an attack on the providers of that agency it enforces regulations for. I think what would be more constructive, Senator Marshall, for all of us…this is yourself, and myself, and many in this room, is to sit down at a table and discuss the problems that continue to exist and work to improve them. I think that would be a much better forum, and a better way to do it. We are not going to get it done with accusations or finger pointing, or allegations. I think it needs to be done with everybody working together like you tried to do in 1997. I don't know why we have to steer so far away from that approach, but I find it very offensive and very, very negative.”

Sen. Marshall said that through public discussions and state-wide public hearings in 1997 through 1998, the Legislature made substantial material progress in providing protections for Delaware residents. There are about 5,000 residents on any given day in long term care. Referring to previous nursing home reform hearings, the Senator said that the hearings produced dialogue and discussion on issues that lead to constructive outcomes benefiting nursing home residents, and providing families with the peace of mind that they seek during a difficult time. However, the Senator said that he recalls one issue that came up - the issue of criminal background checks. The Senator stated that if those hearings and discussions by the legislature had not occurred, the industry would not have moved in a constructive proactive way to have the FBI, SBI, criminal background checks required. The Legislature moved quickly and there was an appropriation of about $250,000 and the FBI, SBI, criminal background checks were implemented with the appropriate regulations. That led, through today, to about 800 dangerous, violent, convicted individuals being kept out of employment in Delaware nursing homes. The Senator said that although one may view the public discussion as somewhat unproductive, in reality, and it is the hope of the Committee members that this would lead to an improvement in the system. Sometime, it takes public discussion. And from time to time, the Joint Sunset Committee will take that sunshine and place it on a state agency and its work.

Ms. Waldron responded, “We certainly appreciate all the work you have done. There have been a lot of laws that have been passed because of your efforts and the efforts of the legislature. And there is no question about it that they need to be done. I do want to make a couple of comments and a couple of corrections. While we welcome the FBI checks, because the facilities were not able to do those without the laws being passed, I would like the record to show that most providers at that point at time where doing criminal background checks at a state level. And we are doing drug screens as well. So they have stepped up to the plate to do that. With your legislation, Senator Marshall, we are now going further and looking further into the background which needed to be done. So we thank you, but I did want to make that correction. Facilities will already doing that – many of them. And the other thing is, that I agree that sometimes Joint Sunset and Sunshine is great, I think the approach that we take is what is important. And if we take the positive, constructive approach, we are going to get an awful lot done for the residents in the bed, other than coming out with a lot of negativity all the time. And that is my only – the only thing that I have been very disappointed with. Thank you.”

Charles WelchThe Mary Campbell CenterSubmitted text (as read) follows:

Good Evening, Ladies and Gentlemen; Members of the Committee:I appreciate the opportunity to make a few remarks regarding the Director of the Division of

Long Term Care Residents Protection of the Licensing Department.I should. identify myself as one of the Founders and past Chairman of the Mary Campbell

Center and presently a member of the Board and Chairman of the Advisory Board. The Mary Campbell Center opened in 1976 and currently serves the disabled in the areas of residential services, respite care, day habilitation, after-school, weekend, educational and summer programs and provides occupational, physical, massage, speech, and hydrotherapy. We employ

5

13 nurses, 27 resident care technicians, and 125 other staff people and we are supported by over 200 volunteers.

Why am I here? I followed these hearings in the press and I could not believe what I read about Carol Ellis being soft on health care facilities. That is the reason I am here. Now I must tell you that I have had my differences with Ms. Ellis. The Mary Campbell Center also had a nurse who left us after not being promoted and went to Licensing and was employed and subsequently served as an inspector of our facility, wherein several deficiencies were lodged against us.

We appealed that decision, hired the best lawyer available, and brought our Doctor, nurses, and staff to the hearing. The legal procedures required that Ms. Ellis hear the case regarding the actions of her nurses. Needless to say, we lost the case and I learned in that experience that Ms. Ellis is one tough adversary; she knew the Mary Campbell Center is highly regarded in the community and in this Legislature, but in spite of that reputation, she backed her nurses to the maximum and I must say that her nurses were well prepared and professional in that hearing. The nurse in question did not appear, however. She denied us in our appeal.

The law afforded us no place to take our appeal and she and her nurses prevailed and anyone who says she is soft in her administration has not tangled with her. She followed what she saw the law to be and followed legal procedures. Fortunately since that time, legislation was passed unanimously in both Houses that allows an appeal to Superior Court and requires that an employee who departs a facility who goes to the Licensing Department should not inspect that facility for a period of three years. But during that process of getting the Bill through the Legislature, Carol Ellis fought me every step of the way. Again, she did what she thought was right for the health care community. I believe she was wrong, but she had my admiration for her efforts.

I said that the Mary Campbell Center opened in 1976 and I have been hands on in that operation from the very beginning. I have seen all of the people who have held Ms. Ellis' position come and go, and I must say she is the toughest of all who have held that job. In spite of a great shortage of nurses, she has built a strong force of inspectors who, I believe, have done a good job under difficult circumstances.

Turning now to the idea that this position should be held by a nurse, I couldn't disagree more. Nurses are a hard-working, highly professional, underpaid and unappreciated group of women and men. My experience over these 30 years has shown me that these individuals have one weakness, namely, rigidity that calls for hard and fast, black and white rules for any problem. This position is a management job and requires judgment, flexibility and special leadership qualities that do not come with training as a registered nurse.

I would urge that you not put all your eggs in one basket of a disgruntled nurse who found things not to be of her liking. We had that experience at the Mary Campbell Center and it was costly in time, money, and our record of excellence.

In closing, let me say that whatever fault you want to find with Ms. Ellis, it should not be that she is soft on health care facilities. I will be happy to take your questions.”

Rep. Valihura asked Mr. Welch what changes he thought needed to be made.

Mr. Welch replied, “Well, I think the change that was really needed more than anything else was an opportunity to be fully heard when you had a grievance. This legislature gave us that. And it was a unanimous vote. I find these inspectors tough. They find some few deficiencies with us, and we correct it. But I can tell you this, if we get one coming in that we think is unfair, we will be in Superior Court, and I think that is a good thing. I think you ought to have that right, but I don't see any great changes – first of all, they need more people. They need – the people - that have got most of them are very highly qualified. The nurse that had the grudge against the Center came out there, I thought was egregious, and that is the reason we appealed, but I don't see great faults. I think they need more money, more training, and more good people. But we are all having trouble getting nurses, ourselves. And it is not an easy task to fill your quotas and your needs because the requirements are high.”

6

Rep. Valihura asked if the process is working.

Mr. Welch replied, “I find that the Mary Campbell Center is working very well. They come, they come as a surprise, they spend 2 or 3 days. They find a lot of little nit-picking things, but that is all right. That keeps us on our feet. And they sometimes find things that we should have found ourselves. We bring in regularly an outsider to do mock inspections for us so that we are ready when they come. It costs us $250 a shot to do it, but it is worth it. It keeps us on our toes, but I don't – other than a shortage of people, the ones that I've seen, and I've had to work with, and even when I had to appear before them in their testimony when we had our case up, I thought they were highly regarded professional people, and they stuck to their guns, and they turned us down. I think that if we had had a right to go to Superior Court, we would have won it, but we didn't, so we are on with it. And we have put that behind us. It was a tough operation. It was tough in this legislature, when Carol Ellis was taking me on in every committee, fighting my bills. Fortunately, the legislature saw it my way. But she was doing at that time what she thought was right. She thought that if she couldn't put nurses back into a facility where she recruited them from, it is going to be harder for her to get more nurses. That was not the issue. The issue was a question of fairness.”

Sen. Marshall commented that Mr. Welch brought up something that peaks his interest – the advanced preparation in a mock survey – why would that be necessary. The survey conducted is a three-to-five day exercise by the Division that is unscheduled and theoretically of a surprise nature. The Senator asked why a nursing home would need to prepare for a survey through a mock session, when the tasks that are reviewed are required to be performed on a day-to-day basis, regarding health care delivery, quality of care, are the normal day-to-day activities.

Mr. Welch commented, “Senator, if I could get you to spend 24 hours a day in the Mary Campbell Center, with 3 shifts of people, residents, care technicians, nurses, and staff, it is a tough operation to run, with almost every person in a healthcare facility is unique and different. And it is very, very difficult to stay right on top. The reason we do this is because we want to be the best in the state. I don't think we have to do it. We didn't do it in the past, but we decided that it was a good way to keep ourselves in shape all the time. But it is a tough, tough operation to run the healthcare facility. You spend a little time – I've been there 30 years now, this is my 30th year, and I am in there day, night, and I go in there after hours – I go in at 1:00 in the morning if I am out and I know what is going on in there. And I can tell you, these people that work in these facilities are dedicated. I don't know how we get them to do the kind of work we do with the pay that is available for them. A mock survey is just another way to try to…we never know when the surveyors are coming. We could have a mock survey and they wouldn't be there for 6 months. That doesn't bother us. And we try to stay on top of it as I think – there is – obviously, facilities aren't measuring up and that is what these people are trying to come after. They have to come after us too, because they've got to inspect us, too. I think us, and the Little Sisters of the Poor have the best directors in Delaware and we want it that way. And that is one of the reasons why we have mock surveys.”

Sen. Marshall stated that Mr. Welch’s commitment to the issue, and credentials are impeccable. Senator Marshall stated that he also thought of the Little Sisters of the Poor and Mary Campbell as the two role models when it comes to quality of care, but the JSC is concerned about all of the nursing homes in Delaware. The Senator said that if you applied the standards of these two facilities to every nursing home, it would possibly raise the bar considerably and make a significant difference. Sen. Marshall asked Mr. Welch is he was available on a consulting basis to work with the Committee with regard to recommendations.

Mr. Welch said, “I'm sorry. I am retired. I devote my time only to the Mary Campbell Center.”

Sen. Sokola stated that he has been an admirer or Mr. Welch and his organization for a long time. The Senator stated that he wanted to follow up on Mr. Welch’s comment about the director of a regulatory

7

agency, and whether or not it should be a nurse. Sen. Sokola asked Mr. Welch if he is suggesting that a nurse should not be a Director?

Mr. Welch replied, “Absolutely not. You've got a group of professionals that are trained to be precise, be careful to make sure everything is absolutely correct. It takes us time when we get good nurses to make managers out of them. The pool isn't that big. And if you think about it, you are just going to pick out nurses and put them at the head of this division, you better look long and hard about what their experiences are, and whether they are really a manager because this is a management job. It takes some judgment in trying to run it as it should be run. No, nurses – that is their profession. That is what they are taught to be to be absolutely precise about pills, and about everything they do. And that is a problem we've had from the Mary Campbell Center. When we get them, we run an operation where we treat these people – that is just like their home. When a nurse says that everybody has got to get up at 8:00, we say no, no you don't. You don't get up at 8:00 when you are at home. But the nurses like it that way. It is the way they have been trained to be precise. We have wonderful managers at the Mary Campbell Center. But you just don't go out and pick them off the trees.”

Sen. Sokola said that the reason he asked is that some of those regulatory and managerial skills may not necessarily be a part of traditional nursing training, but a lot of them do happen to have some of those skills.

Steve AutmanMr. Autman said “Good evening. I guess it is evening by now. I appreciate the opportunity to talk with you today. I am a little bit rusty. I've not spoken in public for quite a while now. My plan is to divide my comments into three general categories, and contrary to what Ms. Waldron said earlier, and what I would like to be saying, many of the things that I am saying are not going to be as positive as we would all like them to be. First of all a couple of responses to last month's hearing. The first one regards Ms. Brady, as you remember Ms. Jennifer Brady represented the association at the last hearing. She made a response to a question that was asked regarding whether nursing home residents may participate in the informal dispute resolution processes.”

Submitted text (as read) follows. Please note that text within parenthesis are Mr. Autman's added thoughts expressed while reading his submitted letter:

Thank you for the opportunity to speak before you today. I shall divide my comments into three general categories:I. Responses to questions asked and statements made at the February 22, 2006 hearing.

A. Ms. Brady's response to the question as to whether nursing home residents may participate in Informal Dispute Resolution processes. Ms. Brady responded that they could, but that many were either unable or incompetent to do so. A follow-up question might have been and should have been asked as to whether family or legal representatives of the resident might participate. In fact, residents, families and/or their legal representatives are not permitted to participate, according to CMS regulations. (Unless things have changed in actual point of fact the independent dispute resolution process excludes residents, family members, ombudsman, advocates, and any legal representative from participating in the independent dispute resolution process. This is not just in Delaware, this is a CMS regulation. I believe when that was discussed, we talked about how wonderful the justice system is and what a parallel this process is to the justice system where mediation is becoming an increasingly used tool. As I recall, and I am not a lawyer, mediation and informal dispute resolutions involve both parties. Unfortuately, those people who are the victims, or alleged victims, of abuse and neglect are excluded from that process, and any subsequent negotiations regarding penalties that may be levied.)

B. Secondly, Mr. Oberly asked Ms. Roberts what more she was seeking from her testimony, since the facility in question was ultimately fined and sanctioned after the violations were upgraded. Please note that these penalties were only levied after Ms. Roberts broke with

8

Division protocol and went directly to CMS with her original report. Please note also, that the family of resident #l, Edythe M. Autman, received a general letter from the division, of citation notification almost two months following her death, and after receiving prior information through letters from the Division stating that no major violations had been found (denying other complaints as insubstantive). I will not speak for Ms. Roberts, although I say rather than speak to her in vague and …terms, you may want to regard her somewhat as a whisleblower rather than a malcontent. I see no justice accruing to Mrs. Autman, and I fail to comprehend how that change in findings could possibly mitigate the harm done over a nine month period. What would be the use of a corrective care plan for a deceased person?

C. Thirdly, upon questioning by the co-chair of the JSC, Ms. Ellis denied on the 2/22/06 meeting that she had decided not to enforce the staffing by shift requirement of Eagle's Law. The minutes of 5/29/03 clearly indicate that Ms. Ellis had made such statements. Further, those same minutes indicate that Ms. Ellis admitted that she had not fully enforced sanctions on facilities in violation of the Federal CMS requirements despite the fact that the Division has a contractual relationship with said Federal agency to impose and enforce those sanctions.

(I have and you have in your packet here, a report that goes to the General Assembly dates June 3, 2003, that documents not only that refusal, but her refusal to enforce sanctions fully according to the contract with CMS and the State of Delaware through that division. And here we are 3 years later. Now while things may have changed, each of these has had a bearing on my mother's pain, suffering, and circumstances surrounding her death. You also have in your packet, and I believe that you have the complete report on Ms. Roberts testimony and from her original report, information regarding the specifics of a number of different facilities. I am going to refer you to the documents, the sections in there that refer to Shipley Manor, and I am going to go through them to give you a timeline here in…form. As you will see, it was not as Mr. Lynch from the Department of Health and Social Services asserted in the News Journal a case of osteoporosis that caused the decline of my mother.)

II. Additions and emphases to Ms. Roberts' report concerning Shipley resident #1, Edythe M. Autman

A. Mrs. Autman precipitously lost weight in the late summer and early fall of 2003. The attending physician indicated in the record that this was due to an underlying, undisclosed condition. In fact, that condition was pain. Pain management and ensuring that residents receive adequate nutrition are Federal and State code requirements. Shipley failed to comply. Consequently, Mrs. Autman became increasingly weak, though ambulatory. The loss of strength led to a series of falls in the late fall of 2003. She became even less ambulatory.

B. Loss of strength and diminished mobility led also to the beginnings of a pressure sore.

C. In mid-December, Mrs. Autman experienced a fall after which she complained about severe pain in her hip. No examination was made nor X-rays taken.

D. On December 29, 2003, Mrs. Autman experienced another fall and was taken by ambulance to St. Francis Hospital where she was evaluated by medical staff. Late on the evening of 12/29/03 or in the early hours of the morning of 12/30/03, Dr. Douglas Palma, the surgeon in charge of her care, reported to the family that Mrs. Autman had suffered a complete fracture of the hip. Assoundingly, he also reported that a partial fracture of that same hip had occurred within the previous month and had apparently gone undetected and untreated, as it had begun to recalcify. If that wasn't enough, he additionally reported that Mrs. Autman had an open pressure wound, was malnourished, anemic and that her weight was about 60% to 74% of average for a person of her height (weight).

E. From the time of her return to Shipley until her passing on May 12, 2004, family was present at every lunch and dinner. Mrs. Autman gained weight immediately. (9 lbs alone in the month of January.)

F. During this period, it was stated to me by a staff member that on weekends residents did not receive the same quality of care as they had during the week.

9

G. Within ten days of her return to Shipley, Mrs. Autman fell out of bed. Family was told upon inquiry that X-rays were not ordinarily done on fall victims. The family insisted. (An x-ray was taken, and fortunately, there were no untoward results.)

H. During a meeting in January, staff stated that the pressure sore was healing well. At a subsequent meeting, statements were made that the original pressure sore indeed had healed, but a new one had begun.

I. In February, 2004, Mrs. Autman was transported to the Wound Center at Riverside Hospital at the family's insistence. There, it was found that Mrs. Autman suffered from a stage IV pressure wound, and that there may have been two that had merged to one. It was determined that two steps had to be taken: an air mattress must be installed in her room, and a Vacuum machine must be employed in an attempt to heal the wound.

J. About one month following the installation of the air mattress, a mattress company technician visited Mrs. Autman's room while family was present and instructed a nurse and an aide on the proper use of the device. Prior to this, the device had been improperly utilized.

K. On May 12, 2004 while I was present for lunch, a technician came to the room and made five attempts to draw blood samples from Mrs. Autman. The tech finally gave up and stated that she had never been unable to draw blood from a person before, and Mrs. Autman was severely dehydrated. She then left the room. Mrs. Autman died within the hour.

As you can see, this is the recounting of a prolonged period of pain and suffering that could and should have been prevented. There is a pattern of willful neglect and abuse, misrepresentations of fact by the facility and its associates amounting to criminal behavior. If that were not enough, the Division had the insensitivity and arrogance to downgrade these offenses to a level that protected both Shipley Manor and its parent corporation, Sunrise Senior Living. Informal Dispute Resolution meetings and subsequent penalty negotiations took place with no participation or knowledge of the family or its legal representatives. In case one is inclined to write off the passing of an elder to age and frailty, let us not forget the purpose and duties of care facilities. Does anyone truly believe that persons coming to a nursing home are without conditions related to age or disease? That a person is old does not mitigate a facility's responsibility to deliver appropriate and timely care according to sound medical practice.

Mr. Autman provided an example.

Mrs. Autman's travails are not singular. National studies indicate that, for every one complaint filed, many more incidents go unreported due to fear or ignorance. Further, how many reported incidents are downgraded unjustly? Studies indicate this is common practice. It is time for a change and past time for justice. (Now I know there are people who work in the industry who are committed, honest, competent, hard-working people.) …this is a common practice. It is time for a change, and…committed, honest, competent people, and I have come across a number of them in my brief experience while my mother was staying. There are innovations happening all the time and that laws a regulations are being passed in order to improve the care of those who are elderly and disabled in care centers. However, category three. Let me just recite a few organizations.

(Continued in text from submitted letter below.)

III. The Federal Center for Medicare and Medicaid Services, the Delaware Department of Health and Social Services, the Delaware Division of Long-Term Care Residents Protection, the Delaware Nursing Home Residents Quality Assurance Commission, the Delaware Division of Services for Aging and Adults with Disabilities, the Delaware Department of Justice, the Delaware Healthcare Facilities Association and its companion organizations, the Delaware Joint Sunset Committee, the State Legislature, at least one underground group and many individuals from all sectors of our community purport to hold in the highest regard the interests of elders. Yet, despite steps toward improvement, our elders, having entrusted their health and their very lives to others, continue to be betrayed. This is not a story of one person; it is a story of many and the system and institutions that continually fail to meet elders' most critical needs.

10

This is a story of compromise, collusion, profit, fear, and politics that ought to offend the sensibilities of every person who believes that compassion, competence and commitment must prevail over compromise and conciliation.

You and all of those who have accepted the responsibility for caring for our elders must make a choice: either step beyond this cloud and into the light, or one day suffer the same fate allotted to our parents. It is time to honor those who have made our world what it is today. If not we, who? If not now, when?

Now is the time for a truly INDEPENDENT CITIZENS ADVOCACY GROUP FOR ELDERS, unfettered by compromise, constraint or fear.

Thank you.

Beth Ewell (BSN RN) Submitted text (as read) follows:

Senator Marshall, Representative Oberle, and other members of the Joint Sunset Committee, my name is Beth Ewell. I am a Registered Nurse from Lewes, Delaware. I am here today to testify as a public citizen at this hearing regarding my concerns about the Division of Long Term Care Residents Protection (DLTCRP). My mother had Alzheimer's disease and was living on the memory-impaired unit of an assisted living facility in southern Delaware. On November 5, 2001, I called the DLTCRP and spoke to Tom Murray. I told him that the facility did not have enough staff to provide adequate care for the residents. On numerous shifts, I had witnessed one resident assistant trying to care for the 13 to14 residents that had cognitive and physical impairments. Some of these residents needed to be fed, many were incontinent, and several residents were confined to wheelchairs. These residents required more care than the facility was able to provide. I followed up with phone calls to the DLTCRP on both November 15, and also on November 19 and left messages on an answering machine. On December 10, 2001, I called the DLTCRP and this time I spoke to Jean Marie McKinney. I again complained about the problems occurring at the assisted living facility. Ms. McKinney didn't know anything about the report that I had given to Tom Murray on November 5, but she eventually found it on Tom Murray's desk. I was told that the report had never been filed. Almost two weeks later on December 21, 2001, another resident at the assisted living facility where my mother resided, sexually assaulted my mother. The DLTCRP was notified, as well as the Attorney General's office and an investigation took place. I spoke to Pam Park, a compliance nurse with the DLTCRP on January 18, 2002 regarding the investigation. Pam Park and I spoke a few times over the next several months while she conducted the facility's survey and submitted a written report. On May 14, 2002, I received a call from Pam Park and learned that there would be no deficiencies or civil money penalties issued for the assisted living facility where my mother had been sexually assaulted. Pam Park also told me that her written survey sat on Carol Ellis's desk for over a month after it was submitted, until I (Beth Ewell) testified on March 11 and 15, 2002 at public hearings concerning the revision of the assisted living regulations. I openly spoke out at those hearings about my concerns regarding the assisted living facility where my mother had resided. After the hearings, Carol Ellis paged Pam Park and pulled her out of another survey and told her she would have to go back to the facility where my mother was assaulted to review the records. Pam Park told me that Carol Ellis "refused her survey" and handed it back several times over the next few months until it was completely "watered down." Pam Park also told me that Colleen Anderson of the Attorney General's office had been faxed a copy of all the revisions of this survey. Because the facility did not receive any deficiencies, no record of the incident would ever be made public. Incidentally, I received a letter dated September 30, 2002 from the DLTCRP. The letter reported that Rose Bussard, an employee of the division, had done an investigation regarding my original complaint from November 2001 concerning inadequate staffing. This investigation took place on September 5, 2002, ten months after my original complaint. Rose Bussard stated that the investigation included a focus on my mother's care, which seems unusual since I had moved my mother to another facility soon after she was sexually assaulted. Are residents

11

afforded the same rights and protections as other individuals in the state? Do you leave your civil rights at the door when you check into an assisted living facility or nursing home in Delaware or is the Patients Bill of Rights just an unenforceable joke that exempts facilities from providing a safe environment for memory-impaired residents? Thank you.

Joan SpringerMs. Springer made the following comments:

Thank you for listening to our tale of woe. On July 6, 2004, our brother wrote a letter to Harbour Health Care regarding the following. On the morning of the 4th of July, Harbour Health Care and Rehabilitation Center called to say that our mother had a bruise on her left arm, which by the way was her paralyzed side. They asked whether we wanted her treated as Beebe Hospital. Of course, we told them to take her. She was transported to the emergency ward and we went over there and the examination revealed a hematoma caused by trauma. In addition, the results of the blood tests showed that her blood was extremely thin with an INR reading of 7.0. We have several photos here to show our mother's condition when she was admitted.

Over a week before that, a series of bruises had mysteriously appeared on her good arm, with no explanations to us as why they didn't know. She was returned to the nursing home from Beebe Hospital the same day, July 4. And on July 7 was returned to the hospital because her condition had deteriorated. On July 19 in Beebe, after having not been checked for 9 hours, her feeding tube was dislodged. They didn't catch it at 9 hours at Beebe. Because of the lapse of time, the opening had begun to heal, and the hospital staff informed us that she would need another procedure, an invasive procedure to reinsert it. We questioned why this was not detected within the 9 hours since she had a feeding that was supposed to go on at that particular time. No one can give us any answers.

Several months before that, at Harbour Health Care, a large hematoma appeared on our mother's forehead, the size of a robins egg. Without any explanation from the staff as to how it appeared there, it took several weeks for her forehead to return to normal. The so-called investigation showed no explanation. We requested an immediate investigation into all these matters, and were informed later that there was no explanation and no evidence of abuse. We had contacted long term care, the Attorney Generals office, both of whom dismissed this. They both made investigations and nothing arose out of those investigations. When we had to make a decision to place our mother in a nursing home in the beginning, we interviewed the 5 local nursing homes available in the area, and looked into their ratings. After speaking with several people in the nursing home, I also spoke with Senator Bunting about the nursing homes, and this was back in 2002.

Harbour Health Care had been recommended over the others. At that time, it had a pretty good rating, but as we all know, the ratings all go up and down. You can't depend on them. What if the same people continue working at this nursing home, or any other home, and continue to be negligent with people who are helpless and entirely dependent on them which our mother was. She was completely paralyzed on her left side, and that was the side where the big hematoma, her arm was out like that when they took her to the hospital. Our mother suffered a great deal at the hands of these people and all we hear is there is no evidence of negligence or abuse. That was their report.

After reading the article in the News Journal this past Sunday, we decided to come here.

Jean Hessler. (Ms. Springer’s sister continued the testimony)

Our mother was 95 years old when she died. After reading the article in the News Journal this past Sunday, we decided to come here today and state these facts because we feel our mother's case was downgraded. We feel for all people in nursing homes who have to suffer pain, and the loss of their dignity when they are treated with such a lack of care and respect. We met some very wonderful, caring people on the staff, and some great volunteers who were

12

dedicated. But we would never recommend Harbour Health Care to anyone considering placing their parent in a nursing home.

Julie PriceMs. Price made the following comments:

My name is Julie Price, and I am here today because I wrote a letter of complaint 2 years ago to the Division of Long Term Care Protection, and although I had some telephone conversations with them after that, I never received any kind of written response from them and never received any kind of actual resolution informing me of what happened.

My complaint was about the care that my mother received when she was a patient at Westminster Village, here in Dover. I am going to read you just a little bit from the letter that I wrote originally to the Division. In November of 2001, I was living in Cincinnati at the time, and I called my mother who was at the assisted living facility in Westminster, and even though she had been diagnosed with Alzheimer's, she recognized my voice immediately, and called me by my name, and we had a conversation. However, about 2 weeks later in December, I received a phone call from my sister who lives in Clayton, Delaware. She said that Mother was suddenly in a semi-catatonic state, lying on her back, with her arms pressed rigidly over her chest. She was unable to walk or eat, did not know who anyone was, and had been taken to the hospital. When I came to Delaware a few days before Christmas, Mother had been released from the hospital, and was in the Westminster Village Nursing Home, or the Health Center. She did not recognize me, and was lying on her back, mumbling incoherently, unable to move without assistance. I also noticed that her lips and teeth were covered with dried food.

After meeting with the staff at the Health Center, my sister and I requested that Mother be taken to the hospital where she received treatment for dehydration and a UTI. At the hospital, the nurses said that her mouth was "a mess due to lack of cleaning." They put her on an IV, and cleaned out her mouth, and she became more alert and was able to take some food, although she was sometimes having difficulty swallowing. When she was ready to be discharged, we decided to have her taken to a different facility instead of returning to Westminster. However, she showed little improvement, and she died in March of 2002.

Of course, both my sister and I were shocked to see such a sudden, severe and unexplained change in our mother. In order to try to determine what caused mother's sudden decline, I met with the head nurse at Westminster Village Assisted Living. She told me that mother was considered to have been a behavior problem, and that several drugs had been prescribed to deal with this.

The drugs included Ativan to be used as needed, and Risperdal as a sedative every night. In addition, a psychiatrist called in as a consultant, had begun prescribing Depakote in late November. The nurse told me that because of Mother's adverse reactions, the assisted living nursing staff had withheld the Depakote on several occasions. However, she said as nurses, they could only withhold the drug for a few days, and had to resume giving it afterwards due to the doctors orders. Based on the notes from my conversations with the head nurse during December of 2001, for a period of about 2 weeks, what happened, was that my mother had various symptoms of falling down, being unable to feed herself, becoming incontinent, which she had never been before. Each time that the drug was withheld, she got better. Each time it was resumed, she had the symptoms again. Finally, she did not get better after the drug was withheld.

I wrote this letter of complaint after I had originally talked with the Ombudsman, who referred my complaint to the Division of Long Term Patient Protection. After she referred it, I got a phone call from the Division, and we spoke at length about my mother's case. And the person I spoke to said that she was going to send me her card, and a release form so that she could get all the necessary medical records to investigate the case. However, I never got her card or any release forms. I never got anything in the mail. So in January of 2004, I decided to write a letter detailing my complaint, which is what I was just reading to you, from (see below). After I wrote the letter, I received a follow-up call from the Division, and they said that it was a

13

very nice letter, very well-written, and they were impressed by it. They said that they had done some preliminary investigation and that they had spoken with one of the doctors involved in my mother's case, and that he had said that my mother really shouldn't have had the reaction that she had because the amount of medicine that she was given was normal. And what I told them was that I felt that you can't really give medication based on how a patient SHOULD react, but that that you should observe HOW THEY ACTUALLY ARE REACTING.

When I spoke with her on the phone, she said that she didn't need any release forms form me because she had already gotten some material from the doctor's office and from the assisted living facility, and that if I wanted her to look at the hospital records, it would be up to me to get them for her, and send them to her, which I tried to do, but the records that the hospital sent me were incomplete and didn't even cover all of the times that my mother had been in the hospital, and they also included material from another patient. So, I, at that point, it seemed very difficult. I wasn't sure if I was going to be able to pursue this, and I didn't contact them again, and I never heard from them again. And this was 2 years ago. I didn't get anything back from them at all.

The reason I am here is that, first of all, not having heard from the Division, I felt that I was really surprised that I was supposed to get the hospital records. I didn't know that that was the normal procedure. And I was surprised that they never sent me anything in writing regarding the resolution of the case. And the other reason is that I think that one of the problems I have with this is that perhaps my mother's case involves something that was outside of the purview of the Resident Protection Division, and that is the question of drugs, and how they are used with the elderly, especially the elderly that have dementia. I really feel strongly that there needs to be some kind of oversight, not just of the institutions, but also of doctors and of the prescribing of medications for the elderly. Thank you.

Submitted letter from Ms Price to DLTCRP dated 1/14/2004 as follows:About three weeks ago, I received a phone call from someone in your office telling me that

the case of my mother, Frances Price, had been referred to her and she was going to investigate it. I told her that I would like to cooperate with her investigation. However, so far, I have not received her card or the release form she said that she would send for me to sign, in order for her to be able to pull the relevant records. We discussed my mother's case in some detail on the phone, but, since I have not heard anything more from your office, I thought it might be helpful if I put some of this in writing.

My mother began living in an Independent Living cottage at Westminster Village in Dover in the late summer of 2000. About two months after she began living there, in October, the administration at Westminster decided that she needed to be in the Assisted Living facility, and she was moved to an apartment there. Four months after that, in February 2001, she was moved into a newly-created, locked wing of Assisted Living designated for dementia patients. She was resistant to this arrangement at first, but when I visited her in August of 2001 (I was living in Cincinnati at the time) she seemed to feel more at home there. During the August visit, she was confused about some things, but she knew who I was and enjoyed eating ice cream and taking short walks with me. In November, I called her on Thanksgiving Day and she recognized my voice immediately and called me by my name (without my having to identify myself) and we had a conversation. However, about two weeks later, in December, I received a phone call from my sister, who lives in Clayton, Delaware. She said that Mother was suddenly in a semi-catatonic state, lying on her back with her arms crossed rigidly over her chest. She was unable to walk or eat, did not know who anyone was, and had been taken to the hospital. When I came to Delaware a few days before Christmas, Mother had been released from the hospital and was in the Westminster Village nursing home (the Health Center). She did not recognize me and was lying on her back, mumbling incoherently, unable to move without assistance. I noticed that her lips and teeth were covered with dried food.

After meeting with the staff at the health center, my sister and I requested that mother be taken to the hospital, where she received treatment for dehydration and a UTI. At the hospital, the nurse said that her mouth was "a mess" due to lack of cleaning. They put her on an IV and

14

cleaned out her mouth, and she became more alert and was able to take some food, although she was sometimes having difficulty swallowing. When she was ready to be discharged, we decided to have her taken to a different nursing home (Silver Lake) instead of returning to Westminster. However, she showed little improvement, and she died at Silver Lake in March of 2002.

Of course, both my sister and I were shocked to see such a sudden, severe, and unexplained change in our mother. In order to try to determine what caused Mother's sudden decline, I met with the head nurse at Westminster Village Assisted Living. She told me that mother was considered to have behavior problems, and that several drugs had been prescribed to try to deal with this. The drugs included ativan, to be used as needed (prn) and Risperdal as a sedative every night. In addition, a psychiatrist called in as a consultant had begun prescribing Mother's adverse reactions, the Assisted Living nursing staff had withheld the depakote on several occasions. However, she said that as nurses they could only withhold the drug for a few days and had to resume giving it afterwards, due to the doctor's orders. Based on the notes from my conversation with the head nurse during December of 2001, this is what happened between November 28 and December 10.

November 28 or 29: Dr. Joshi prescribed 250 mg of depakote sprinkles to be given morning and evening to Mother (in addition to the risperdal which she continued receiving)

Nov. 30: Mother became incontinent, but her behavior was good. Depakote was continued.December 1,2,3: Nurses withheld depakote due to mother's lethargy.December 4: Dr. Joshi continued depakote at a smaller dose (125 mg morning and evening).December 5: Mother was found lying on the floor next to her bed. She lost her balance and

fell backwards. However, the Depakote was continued.December 6: Mother was incontinent and could not feed herself. The depakote was

withheld.December 7: Dr. Sweeney sent Mother to Kent General due to pain from her earlier fall.

She fed herself and was alert. Depakote was given.December 8 and 9: Depakote was withheld due to Mother's drowsiness and lethargy.December 10: Mother became incontinent and unable to bear weight. She lay in a rigid

position and would not open her eyes. She was sent to the ER.December 10 to 14: I believe that Mother may have been in the Westminster Village Health

Center during most of this time, but I do not have specific information for these days.Mother was in the hospital from December 14 to 17. During that time, she was examined by

Dr. Giles and Dr. Varipapa. As you can see from the enclosed copies of their notes and reports, these doctors concluded that sedative drugs had either caused or contributed to the recent changes in her. They recommended a discontinuation of all medications of a sedative nature.

Mother was discharged from the hospital and sent to the Westminster Health Center on December 17. Despite the recommendations of Dr's. Giles and Varipapa against further use of sedatives, the Health Center records show that one of the first things Dr. Malik did, when she arrived, was to prescribe Haldol, to be used, as needed, "for agitation."

My notes on the two weeks before Mother's Dec. 10 trip to the ER focus on Depakote, because that is what the nurse I spoke to gave me the most information on. Between Nov. 28 and Dec. 10, I believe that she was also being given Risperdal on a nightly basis. Other drugs had been prescribed on a prn basis but I do not know which, if any, were given. Even if there had not been other drugs, it seems obvious that the continued use of Depakote which occurred was not in my mother's best interest. Although Dr. Joshi did reduce her dosage of Depakote, this did not stop her adverse reactions. As this drug was not medically necessary, I do not understand why it was continued at any dosage. Each and every time she received it, she subsequently had symptoms such as incontinence, lethargy, falling over, and an inability to feed herself. It appears that at first, she began to recover from the Depakote each time she was taken off it, but after being put back on the drug so many times, she was no longer able to recover. Perhaps other drugs played a role in her decline. It seems to me that the Haldol later prescribed by Dr. Malik could also have had the potential to sabotage any incipient recovery, if she was even capable of recovery at that point.

15

Thank you for conducting this investigation. Although it is too late for my mother, I believe that holding institutions and individuals (including doctors) accountable is important. Perhaps, in a small way, this can help lead to better care for the elderly, especially dementia patients.

As I indicated above and on the phone, I am willing to sign any release forms that you might need in order to obtain more complete records from the hospital and Westminster Village.

The following is added text received from Ms. Price per an email dated 3/24/06 to Ms. Puzzo:I did not mean to imply that the Division did no investigation of my mother's case. Based on my telephone conversation with a representative of the Division, I believe that there was some investigation. However, I did not feel that it went far enough. Also, as I testified, I never received anything in writing from them regarding their findings.

Daryl LevinMs. Levin made the following statement:

I would like to thank you the committee for the opportunity to speak. I wish I had the eloquence that some of the past speakers have. It is my honor to talk to you about services that my mother has received from Shipley Manor. The care and the comfort they have provided her as a resident, and my family, as visitors, guests, and customers.

A few years ago, my mother began her physical and mental decline. What started out as a fall from an osteoporotic hip break, turned into mild strokes and dementia. My family was devastated, and didn't know where to turn. How could we help our loved one live a happy life with such problems. Initially, we brought her to my house where she continued to fall at night when everyone was asleep. Clearly, we were not equipped to care for her. Fortunately, a social worker suggested Shipley Manor. At first, Shipley provided rehabilitation services along with temporary housing, while my mother recovered from surgery and stroke. They worked with her patiently and caringly, even as my mother's mood and stubbornness continued. At one point, the doctor pronounced her ready to return to her home. Although Shipley Manor was concerned, the doctor insisted and sent her to her apartment. It was quickly evident that she could not live on her own, and in fact, she developed an infection, fell, and it caused her to return to the hospital.

When discharged, again, to Shipley for recovery, we knew what needed to occur. We needed to find a place, that not only could assist my mother with her recovery, but provide a home for her, for her remaining years. It had become clear to us that she could no longer care for herself. Shipley Manor recognized the need as well. We had had concerns that because of her status with insurance, she would not be able to remain at Shipley for the long term. Our prayers were answered when Shipley informed us that yes, they could and would be my mother's new home. Thankfully, they still are.

Over the past few years, I have watched some of my mother return. The depression she had experienced has diminished, her appetite and weight have returned, and at times, her ability to recognize the real world returns. None of this could have happened without the dedicated staff at Shipley Manor. I can't begin to tell you the number of times they have contacted me with suggestions regarding care plans, diet, or assistance that always improved mother's quality of life and health. But again, Shipley is not only a place that provides shelter. It provides a home. My family has enjoyed holiday celebrations at Shipley Manor with my mother, and we are always welcome to sit down to lunch or dinner with her in their wonderful dining room. They continue to provide my mother with a quality of life I can only hope for when I reach her age and condition.

My life would be easier if mother were in a care facility in or near Newark, because that is where I live. It takes me 45 minutes one way to travel to see her, but I would not want to move her away from the caring staff at Shipley Manor. My family has always been welcome there, and the entire group at Shipley Manor has become an important extension of our family. Again, I thank you for your time, and hope that you, too, will recognize the wonderful and

16

difficult job that Shipley Manor staff performs day in and day out for mom and the rest of the residents. Thank you.

The JSC took a five minutes recess.

Dawn CarrMs. Carr made the following comments:

Thank you. I am here on behalf of speaking for my grandmother, who we have placed in a nursing home back in November of 2001 or 2002. I actually can't get my dates correct, but we placed her into a nursing home, St. Francis facility. Before placing her in there, my grandmother was a vibrant woman. The reason for placing her in there, she was living in an elderly care place, her own apartment, but she couldn't take care of herself too much anymore. She kept having falls and the apartment complex stated that we needed to have her at a place where someone could take care of her a little bit better. In placing her there, before placing her in a nursing home, we – I had her checked out thoroughly, making sure she was ok, and she was fine. No problems other than she had a mastectomy, a partial mastectomy, and she had had two strokes prior to that, but she was still able to walk, able to talk, feed herself, and take care of herself to a certain extent. After getting her into Franciscan, I watched my grandmother slowly decline. Once we placed her in there in November, my grandmother was only there for three months, and that three month time period, she had received – well she had got a decubitus on her bottom that was a sign of a 44 oz cup, and the doctor said he was not sure how that decubitus got that big in that short of a time because prior to her going there, she did not have that. She had to have surgery. They had to place her on a bed with sand, and she remained on this bed until her death, which was February 14, 2002.

The nursing home wasn't able to give me what I felt as though I needed in reference in taking care of my grandmother. They didn't respond to me that I needed them to respond in their care for her. I would go there any given time, I never had a set time. I will go morning, noon, and night, and when I would go there, she is either sitting there with the cold food in her face, or she is sitting there, she is wet. I would ask her how long she was there, and she would just be like, 'I don't want you say nothing, because I don't want them to be mad', and that was my grandmother – she never wanted to start any problems. And I would finally get her to tell me, just by telling her that I wouldn't say anything, so that I would get to the bottom of it.

After awhile, I finally had enough evidence that I sent a letter to the ombudsman, and they sent a letter back to me saying that they were going to do an investigation. Because I had worked for the state for a couple of years, and because my mother was a state employee, we were able to get through a lot of different red tape, and get someone to come in there and do some investigations on top of the fact that I also saw a lot of things in the nursing home that I didn't agree with. I saw a lot of patients laying around – a lot of patients laying on the floor. I would go and assist picking these patients up, patients not eating, and I would tell the nurses no one helped her. I now just have one grandmother left, which is my mother's mother, and with her being with us now, we take care of her because of everything we watched my father's mother go through, I will do whatever I have to do until my mother's mother leaves this earth, but we will never, ever put her in a nursing home as long as she is on this earth – we will not put her in a nursing home again because of what we had to let my other grandmother suffer. Because I feel as though for the things that I allowed those people to do to her, I should be held responsible. I should be charged with her death, because I allowed those people to hurt my grandmother. Thank you.

Submitted text follows:

My name is Dawn Carr and this morning when I read the headliner it was like not another one. I totally sat and read it over and over again for I felt as though I was reading my own situation as I went thought the same trauma Ms. Erbach experienced, just at another facility.

17

My grandmother Edith V. Carr was living in a high rise for senior citizens on Walnut Street for some years after selling her home and decided to go there beings though she was getting older. Well as time went and age came upon her she started having some falls, and strokes, and different scenarios transpired while she was living there. After her last stroke the apartment complex asked to speak with my brother and I in regards to her living there for they stated she was a risk to the complex and they did not want to be held responsible (not that they were for we visited very, very often) but at that time we decided against my will to begin looking for a nursing home for her, a place that would take care of her and provide the type of care needed for her.

Now let me give you some history of her; she was a strong woman with no aliments other than age and the occasional fall and colds. In 2002 my grandmom was in her room and I saw a dark mark on her breast, I inquired and she stated its been there and was hard. I immediately called and made an appointment for a mammogram and she was diagnosed with breast cancer, not long after that she had her breast removed and all was well. That's when the strokes started, and her being moved to the nursing home we decided on which ended up being Franciscan on 8th Street in Wilmington. (I am not sure if they changed the name as I have not been able to ride past since she died). Before we placed my grandmom in that place, I checked her thoroughly and had the doctor do the same and she was good. We placed her in that place in November about two weeks before thanksgiving, and may I just add that was the worse thing I could have ever agreed on in my life and in my heart I let her down. She was first placed in a room with some woman who just would not turn down her T.V. and was just mean to my "mom mom". I asked several times for her to be moved for she talked to me about it and she was one who did not want to start anything for she did not want to be treated differently but I would coerce her to tell me so I could handle it and just pray that those folks did not do anything to my grandmom.

I never seen my grandmom go from the vibrant woman I knew to the lady that sat in front of me daily for I went and came in that place like it was my home, no set time, no appointments just went. Well, I was placing my grandmom's robe on her when I noticed a horrible decubitus on her butt and I lost my mind, they called my brother(he's the calm one) to REPORT me to him as if he could do something about it and I question why this was happening as when we brought her in here a month ago she was fine and now I am looking at this, (she had given up and was not walking anymore so she needed help more than before). Well, they had taken her to St Francis a couple of times and the last time they took her, the doctor told me that they had to perform surgery for the decubitus was so bad it needed to be repaired. (I can't remember the doctors name but he was an angel and the only nice person on that floor, who cared about my grandmom. Their was a hole the size of a 44 oz cup opening.) She was placed in a private room with a bed that had sand in it to help her. Prior to all of this my grandmom sat and talked to me and she told me "why did you let these people do this to me." I literally died and still have yet to be alive again for I let her down and I allow them to do all of this to her. That was our last conversation and I taped her for the three months she was at Franciscan because after she was released from St. Francis but there she was never the same, she never talked again and I never heard her voice again. She died 2/14/03, three months after being placed in the nursing home. Now let me say this from working with the state for the years I have been and my mother retiring from the state I knew some things and I also knew who to talk to about the care she was getting and I knew it was not proper and I wrote a letter to the ombudsman and it was not just for the improper care she was given but how I walked the halls for I needed something and no one wanted to assist or was so "attitude." I was not about to be escorted out but I saw many things, other older people with their heads in their food, I found a man on the floor(and I picked him up) crying and no one coming to them it was just like they were animals in a cage and when they got time they would adhere to them and that is what my letter was all about to the ombudsman. I got a response, telling me they investigated my concerns and they would look into it along with that I was called in by the director of the facility to speak about my concerns, (so now everyone wanted to hear me) but it still didn't matter because in my heart I

18

let the only woman who loved me no matter what down and she died knowing that these folks did not care and she was not going to tell me because she did not want to start trouble.

I was in the same place as the Erbach's and can totally understand and relate to their pain and I as them had no one to listen to me so I just walked around with this guilt on my shoulders for these years and still today it kills me to know what I have committed but I can fight now for her in her voice with my voice and I am willing to do whatever I can do to make a difference for someone else because you only get two grandmom's and I have one left and not one nursing home will get their hands on her.

Sen. Marshall asked Ms. Carr if at any time during her grandmother's stay in the nursing home, whether Ms. Carr ever communicated her concerns to the Division of Long Term Care Residents' Protection in the form of a verbal or written complaint.

Ms. Carr said “I sent the letter to the Ombudsman. I didn't actually write a letter to the Division of Long Term Care, no.”

Sen. Marshall asked what result Ms. Carr received as a result of her letter to the Ombudsman.

Ms. Carr replied, “They sent a letter back to me stating that they were going to do an investigation to what I had stated on my findings on the day that I had come in and had seen a patient laying on the floor, and then what was going on in regards to my grandmother, because I stated in my letter, it wasn't just in reference to her, it was in reference to what I had seen in the overall – within the facility – on the floor that she was on.”

Sen. Marshall asked whether there was any information displayed in the nursing home building, on the floor where Ms. Carr’s grandmother resided, that was visible to visitors, family or friends that would indicate the Division's status as a potential contact for any concerns regarding abuse/neglect of her grandmother? The Senator asked Ms. Carr whether she ever inquired of the staff at the nursing home as to whom she should call with a complaint.

Ms. Carr replied, “No, actually, right there at the elevator, there was – a DHSS letter that states if you have a problem, if there is …neglect, abuse, to call or to send a letter to the ombudsman and it gives you the information on who to contact.”

Gail WombleMs. Womble made the following statement:

Senator Marshall, members of the Committee. My mother has been a resident of Shipley Manor since September 2002. During this time, there have been many changes. In 2002, there were many, many excellent staff members. Today there are excellent staff members, both nurses and aides. These people work very hard to create a pleasant living environment and to serve the needs of their patients. Shipley is always decorated brightly for each season, and there are a host of activities available for residents. Just this past week, I received a call that Shipley was recommending ER treatment for my mother immediately because of a fax report they received. My mother was hospitalized, treated, and returned to Shipley as soon as the treatment was complete. I would be remiss, however, if I did not tell you I have concerns. Some concerns fall in the same area as those expressed by the Autman family in the Sunday, March 12, News Journal article. I choose not to elaborate this evening under the majority of the more serious, specific issues. I regularly bring those issues that appear amenable to correction to the attention of Shipley nurses and ask for their assistance and I get it.

There was one particularly egregious and uncorrected situation that I will relate this evening. At one point, Shipley, I was told, did not have a method to procure new prescription medications from 5:00 p.m. on Fridays until Monday mornings. On a particular occasion, my mother was diagnosed with pneumonia during the weekend. For my mother and for many

19

others who have bacterial infections that are treated promptly, visible improvements can readily be seen in 4 or 5 hours. The reverse is also true. Left untreated, my mother's condition, and I expect many others, deteriorates quickly within an entire weekend passing before receiving treatment.

I first spoke with a nursing director the following week. She informed me that this lapse was policy. My response to the nursing director was this particular policy needed to change. Several months past by and my mother contracted pneumonia again on the weekend. Once again, there was no defined method to get the antibiotic until Monday morning. This second time I reported the problem and I am going to say, to licensing, that is what I think that is called. They investigated and my complaint was sustained. Today there are medications available for all Shipley residents during the weekends. My question remains, what policy on earth could possibly exist at any time to deny immediately needed medical treatment to our vulnerable, elderly loved ones. Was this policy across all Sunrise facilities? If so, is it now corrected? What about the other facilities? What happens when there aren't relatives, or when there are relatives who are not skilled in assertiveness or who innocently believe the best is being done that can be done. Unfortunately, I feel sure most of us can figure out this answer.

About the same time, Shipley and many other facilities were sold to Sunrise Corporation. Significant changes were evident. I do not know if there was a link. I'm saying the….was there. It was at this time that I began to notice the exodus of highly skilled and dedicated staff members. I hasten to add some fine people stayed and continued to serve. For these wonderful servants, I feel eternally grateful everyday.

When my mother entered Shipley in 2002, the food was balanced and tasty to her. It was really surprising to me how uninstitutional the food appeared. Like meals any of us would eat at home. This good fortune did not last long. The food quality continues to slide downhill. Last week when I visited my mother during a luncheon period, I looked at her plate, and had no idea what food I was seeing. The next day I brought her lunch. Unfortunately, I cannot prepare all my mother's meals. Additionally, her physician has asked for a decrease in carbohydrates in her diet. The indistinguishable meal referenced previously, appeared to be 4 or 5 lumps of a possible meat, covered completely in a white, pasty substance, and served on a piece of white bread.

This past Monday, she had a serving of tator-tot type potatoes, and a piece of fish or chicken breaded and possibly fried on a white hamburger bun. The size of her meals has…, but the content is still the same. Surely the doctor's request to watch and decrease her carbs did not mean for staff to merely look at the plates filled with carbohydrates being taken to her. There are many more food stories however. I believe you have heard enough to get this picture.

Clearly, there is much that needs to be done in Delaware to improve the care of our loved ones today. But those of us who are bloomers, we are looking at the care we will be receiving in not too many years. In fact, all it takes is one stroke or one automobile accident for many of us in this room to directly experience Delaware's nursing facility care RIGHT NOW. Is the care we are watching what we want our loved ones to receive? Is the care we are watching today what we want OURSELVES to receive? If the answer to this question is 'No', let's get together and see this system improve. Some suggestions that I have already heard, some of the same ones mentioned by you, Senator Marshall, how about an analysis of patient care on a variety of dimensions across different nursing facilities. Once good information is obtained, interviews can be conducted with the facilities providing the best services in the particular dimensions in which they are… . Cross fertilization could then occur with the various facilities helping each other with the involvement of interested citizens, and I do emphasize that part.

Another approach is to look at non-profit facilities versus for-profit facilities. What areas are similar and which ones are different? Where there are differences, are there clearly differentiated benefits to patients to the profit versus the non-profit perspective? Does the number of facilities matter? When a single owner operates a large number of facilities, do we find better care across the board? Alternately, do we find we have a monopoly issue before us? Are there sufficient choices available?

20

Finally, I will relate one concrete example of available information that aided us in our choice of Shipley Manor in 2002. In comparing facilities, before my mother entered skilled care, I learned that audits were readily accessible through the internet. My husband ordered and reviewed those in our vicinity, which is Newark. The best rated facility that we saw in New Castle County was the one operated by the Little Sisters of the Poor, already referred to here today - years with no audit exceptions, and a couple of years with one or two minor ones. Unfortunately, my mother was not eligible for that facility. There were no other well-rated facilities in the Newark area. Shipley scored higher than many more expensive facilities. In touring the various sites, Shipley had the cleanest and the friendliest appearance in 2002 of all the ones I saw. This necessary quick research provided us with the best choice available at the time. And in September 2002, Shipley was a good choice.

With a committee composed of interested citizens, appropriate state staff, and perhaps a well-regarded consulting organization, and with both citizens and staff persons having skills in various areas, such as program, finance, skilled care, staffing, - surely we can find ways to encourage the development of nursing care in Delaware of which we can all be proud. Thank you for the opportunity to comment.

Rep. Oberle: asked if the family was required to pay for these audits.

Ms. Womble: “Well, I think he probably ordered it from a service that had put them all together so that we didn't have to go here, there, and – I believe he did. A small amount of money. And I don't know where he got it on the internet, but they are available, and we can look at them and see them before our loved ones enter.”

Rep. Oberle stated that the audits should be available through CMS at no cost.

Sen. Marshall stated that Ms. Womble made reference to the medication and the pharmacy not being open 5:00 p.m. on a Friday through Monday morning and that Ms. Womble made a complaint to the Division in this regard.

The Senator raised the issue whether the change in policy by the Division at the facility to which Ms Womble referred was made statewide, or whether the Division inquired as to whether other nursing homes have that same practice, and then required that pharmaceutical products be delivered.

Betty ForakerMs. Foraker made the following comments:

I am here today at the request of my mother who is 71 years old – very young for a nursing home. We had experienced – and she has asked me to come here today to speak, because we have the experience of dealing with a couple of nursing homes and also home care. My mother was diagnosed with cancer over the summer. It was stage IV and serious, so she has progressively lost her independence skills. After a summer hospitalization, we went to a nursing home where she was getting rehab. We had a relatively good experience during that month of September 2005. She received rehab, and we got involved with Hospice on October 1, and we brought her home for 2 months to try to care for her ourselves. We had her home, October, November, and then we returned in December to the nursing home because her situation had deteriorated.

Throughout this time, though, she has been mentally capable, even though her physical needs have become very dependent. And she asked us to share what she has observed. The care that she received from some people was exceptional, and there, I agree with some of the people who said caring for the elderly in this situation is a very demanding and we are very grateful for the people who have been exceptional. But there has also been some situations that have not been well-addressed, and these are things she asked me to bring forward. Staffing, being one of them. She feels that there has been a lack of – there should be some sort of ratio

21

because she is now in another facility. We had to move her on February 22 because we had a healthcare plan meeting for the facility she was in on February 8, and because we had some concerns, and trying to resolve it with the facility because they had been up to that point cooperative. But we had seen a steady deterioration and she had had increased anxiety. It was not anxiety because of her own circumstances because of her health, but she truly did not feel safe in the facility she was in. We also were working with Delaware Hospice who was very involved, and they participated in the health care plan meeting as well. The resulting of the health care meeting was that the care got worse. And this was – we couldn't accept that. And she actually was injured, and we moved her.

She is now in a facility that she feels safe and cared for, and the difference we've been able to see – the difference from one facility to the facility she is in now – and the differences in those two facilities is night and day. And things she has noticed – the training of the staff, makes a big difference. The first place, we were constantly there. One of us was there every day. At some point of the day, often, (she has 4 children), many of us would be there. The staff had actually said, we don't know how to use the lift because as she lost her independence, she had to use the lift. They would tell her, we can't help you now, we will get to you when we can get to you. This involved things like toileting issues, when you can't necessarily wait. They'd skip baths. And they would say, well, we didn't have time for her on her scheduled day, so she will get it when she is scheduled. And it is only twice a week, and sometimes they would miss that, and we would complain, and they would say we will make sure we will make it up tomorrow, and it didn't help.

So she asked that I come today and say that the commission look into doing things that change training – the ratio of staff. There doesn't seem to be any guidelines that say how many patients, any staff member in 12 hour shifts. There were often people working extraordinarily long shifts, and this of course, affects the care. And where she is, fortunately now, yesterday she celebrated her…birthday, and she feels safe, she is happy, she feels she has her dignity returned to her. But we have been in the position of caring for her…herself…other facility, and the current facility, and there are things that really do need to change. And the first facility she was in was Shipley Manor. And the current facility she is in, I'd rather not say because of her privacy. But it is incredible – the difference. And we saw some exceptional people at Shipley, but there also was a steady decline from September 2005 to January 2006. We saw a big difference in the care she was given in that time. Like I said, she asked us to come here today because she as a patient, is not like many of the others where you can question her mental perception, because her mind has stayed sharp through this whole thing. And her anxiety and fear were truly fears of her care because of her dependency. And I think there are things the commission needs to look at and these are things she asked me to bring to you today.

Sen. Marshall thanked Ms. Foraker for her testimony and asked her to the Committee’s sincere appreciation to her mother for encouraging her to attend the hearing and share those comments with the Committee.

Sen. Marshall stated that Ms. Foraker expressed concerns about staffing. The Senator said that the State of Delaware through the Legislature enacted legislation several years ago that provides for staffing by shift, providing a ratio of 1 CNA to 8, depending on circumstances, 9 residents in a nursing home. Hopefully, allowing during that day shift to provide sufficient care during the morning, the breakfast, physical activities during the day, and lunch. The Senator asked Ms. Foraker to share with the Committee more detail as to why she believes there were not adequate staff or whether she believes the ratio was insufficient at that time.

Ms. Foraker replied, “I think that would be too high of a ratio for the care that the patients need. Many of the patients there were very dependent. In my mother's case, she needed to have the lift. Somebody had to put a lift under her to put her from the bed to the wheel chair, so that is a time-intensive thing. There were times when she would ring the bell, and it would be 40 minutes before she would get any kind of a response. Or someone would come in and say, I will get to you when I can. And she knew – I mean, this

22

is a great deal of anxiety when you need help, and somebody just comes in or does not come in for that long of a time. She is very time aware. She is not exaggerating things, and we witnessed this ourselves. We would often, if we were there, try to go get somebody, and even with our family being present and willing to assist, but we couldn't go out and use the equipment. They told us that was a violation of their insurance coverage and things like that. They did not respond. It is people – the elderly need a lot of care. Some of them are patient beyond because they have no concept of time, but others – there were times when I saw people that hadn't had their breakfast, and it might be 10:00 in the morning, and there were people that weren't up and dressed. There were many times that she would say that they didn't get her up and dressed in time, being lunch time. So I think the ratio should be reconsidered.”

Sen. Marshall asked Ms. Foraker whether she, her mother or any family member expressed any concerns with any of the staff at the home, or called the Division or the Ombudsman?

Ms. Foraker said, “We didn't call beyond – we dealt with the staff there. We went to Shipley Manor, and we called, because she was involved with Hospice, we called them, and we held a health care plan meeting on February 8. Like I said, we expressed our concerns. They were surprised at all the concerns we expressed, and less than a week later, there was a major incident, and we said, wait a minute. My sister was in there to help put her to bed. And they were using the totally wrong lift. It was lift that we said that she can't use. She is non-weight bearing. You cannot use this lift, you have to use the sling lift. And they were using the wrong one and claimed that the record said that they were using the right one after we had very clearly held the meeting.” These are things that, like I said, we tried to use the procedures they had in place, and we met with them, and we, at that point, decided to move her, and we were able to relocate her on February 22. And like I said, family was there - every day somebody was there for some period of time during the day. Often there were days when a number of us were there. Like I said, she was also able to relay to us her concern. And she had genuine anxiety. She would not go to sleep at night. We expressed at one point during our health care meeting, that the 3 to 11 time period seemed to be a problem. And they acknowledged there was a problem with it, but they were not having much success in getting it corrected. When I asked one time, because I asked the supervisor – they gave me her name. I said she didn't get her bath on a certain day. She said I promise it will be done. And it wasn't done. These are basic health care needs that these people have to rely on, and our mother was expressing to us, and we were there, like I said, continually on them, and we realized that it wasn't going to be affective, we moved her. And now, she is, thank goodness, she is in a very, very good place where she is.”

Jennifer BradyMs. Brady made the following statement:

I appreciate the opportunity to appear in front of the review panel again this evening. As you all may recall, I am an attorney with the firm of Potter, Anderson, Corroon in Wilmington, and I do represent a lot of long term care facilities here in Delaware and elsewhere. And I also have been in a position of giving advice to family members relating to nursing care. I have seen issues from both sides, and certainly can sympathize with both sides of the issue. But for purposes of this evening, I do represent Shipley Manor, and I was asked if I could present a statement from the facility this evening. If I may, I would just like to read it into the record. It is addressed to the Joint Sunset Committee.

Letter dated March 15, 2006, signed by Scott Barber, and submitted by Ms. Brady follows:

Ladies and Gentlemen:We are saddened that the recent Joint Sunset Committee hearings about the performance of

the Division of Long Term Care Residents Protection has become distracted with inaccurate testimony concerning our senior living community.

Testimony before your committee and recent press reports fail to present a complete picture of all of the facts. Shipley Manor is a licensed skilled nursing facility that has nobly served the

23

needs of many citizens of this state for over twenty years. Like all Medicare-certified skilled nursing facilities, Shipley Manor is inspected by the State at least once every year and more frequently if the State receives a complaint. Shipley Manor cooperates with these unannounced, comprehensive surveys and acts quickly to resolve any questions or concerns. In some cases, we may appeal the State's determinations through the informal dispute resolution process. An IDR is intended to ensure due process when a facility believes that a finding is not accurate.

After receiving the State's deficiency report in 2004, Shipley Manor took immediate steps to address the State's concerns, even while we disagreed with the State's findings. As the public record shows, we had informal dispute resolution with the State and eventually filed an appeal to the U.S. Department of Health and Human Services Departmental Appeals Board. The appeal was settled last year, with the Statement of Deficiencies being modified. We note that throughout this entire process, no finding of abuse was substantiated at Shipley Manor.

While Shipley Manor cannot engage in a public discussion about the care and treatment of any specific resident, I can assure you that our staff works hard every day to ensure that all residents' needs are met. If residents, their families or loved ones have concerns about the care they receive or observe, we are happy to meet with them and address their grievances promptly.

As a Sunrise senior living community, Shipley Manor's team of employees has learned that the safety and well being of all of our residents is the top priority. Sunrise is committed to the high quality of life and care of the residents we serve. We fulfill that commitment by complying not only with industry standards and state regulations, but also by viewing those standards as a benchmark and continuously striving to do better. We know that we are achieving these goals when our team members receive positive comments and words of thanks from our residents and families every day, not just when there are public hearings and inaccurate news reports.

Sincerely,Scott BarberArea Manager, Sunrise Senior Living

Jamie WolfMs. Wolf made the following comment:

I just want to make a few comments based on what I've heard, and based on other experiences I personally have. I have never been in a nursing home, and I have no intention of being in a nursing home. I have that level of fear that is considered to be nursing home level of care. I live in my own apartment. I am totally dependent on other people to assist me. My fear is that one day that support will be gone. A safety net last week left, my safety net for staying in my apartment. Part of it left last week. She left me – she quit. And ever since then, I have been saying, what is going to happen next. I do not…testimony that we have heard, I have not experienced any of these problems. I am healthy, and I am relatively happy. And when you go into a nursing home, the one thing that is not regulated, one thing that is ignored is the person's voice. When a person makes a complaint to the Division, or ombudsman, that is lost. We have heard testimony after testimony that the reports get shuffled in the pile, get stuffed on desks, and never come again until after the person passes away.

I have several friends living in institutions now, who are so afraid of leaving because of not being stuck one day, not having anybody help them get out of bed, but the reprimand of the nursing home, if they want to get out. I have several friends who have said, if I leave, the nursing home won't let me have any of my belongings. I have one friend who put an ombudsman complaint in…Division of Long Term Care for new medical equipment. He was denied the medical equipment by the facility after medical report after medical report after medical report stated that he needed the care – needed the equipment. Now he is in bed due to surgery. He had surgery – he had decubitus and needed surgery for that because of his old chair, and was stuck in bed. We have to find some way. The family and the resident can have choices, if they choose to live in a nursing home, that is fine. But they need to be able to feel

24

comfortable enough to express their concerns, and have their concerns heard. Because from – like I've said, I will never go into a nursing home. It is not my choice. People are stuck there. They feel they are stuck there, and they need to be able to feel heard. Thank you.

Lynn Autman EerbachMs. Erbach made the following statement:

I would like to make a comment about our experience with Shipley. My mother, towards the end, had to go to the hospital to have an operation on this huge bed sore which all of you have seen. It was two bed sores – one bed sore that had tunneled under – they had to slice it and make it run so they could put a pack in. During her stay at the hospital, I received a call from her insurance company saying they no longer were paying her insurance care because she had been reported 'dead'. And I said, I'm sorry, she is at Wilmington Hospital. They said, no, Shipley Manor had reported her deceased. It took me several months to get her insurance company to believe that my mother was dead. I had to get a notary, I had to get – go through all kinds of procedures to get her payments back. Shortly after that, she unfortunately had to return to Shipley Manor, and shortly thereafter she passed away. So I just wanted to bring up that situation. Thank you.

Mike MalkiewiczMr. Malkiewicz made the following comments:

Good evening, and thank you for the polish pronunciation of my name. I don't get that very often. My name is Michael Malkewicz, for the non polish people here. And I am an attorney here in Dover, Delaware. I work in the law firm of Barros, Mcnamara, Malkiewicz, and Taylor, and I am a member of the American Trial Lawyers Association, and also a member of their organization which is the section of that organization as a nursing home litigations section.

I came here tonight out of personal and professional reasons. On a personal note, my father-in-law passed at 88 years of age this past December after being in a nursing home and assisted living care here in the State of Delaware. That was at the age of 88. I am not going to mention the name of that particular facility and quite frankly, I think my family would agree that all in all, we did not have a lot of problems with that facility, but there was a reason for that, and I will say that is probably my wife and my sister-in-law were there virtually every day to see him and to monitor the care that he was getting. And there were blood baths, there were battles, there were arguments, there were threats made and so forth, and they basically demanded that he get the proper care and he got the proper care for the most part. But so many people in the room, rightfully so, have spoken about their loved ones. And what struck me and why I became a member of that nursing home litigation section was, is that as I visited my father-in-law, as many people here tonight are probably talking about their loved ones, for every one of those people, there are dozens, hundreds, if not thousands of people there that don't have anyone except you elected officials, when it comes down to it.

They don't have anyone left in their family. They are living out the last years of their lives. Some of their family is in Idaho, Iowa, California, - they only get here now and then on a holiday. And there is literally no one to speak for them, or to make sure that they get the daily care that the federal regulations require, and the state regulations. And I would just like the members of the committee, and I'm sure, I don't mean to be saying that you are not, but if you don't remember them, please do.

On a professional note, I am a former Deputy Attorney General with the State of Delaware, Department of Justice. I've been in private practice since 1986. During my career, I've prosecuted people. I have defended people that have injured people in nursing homes. I have seen both sides. I have, in my practice now, represent people that are injured in nursing homes. And I am not going to speak on specifics of cases I know, and places I know, because of confidentiality of my clients, but there are several things I'd like to point out, and the committee probably knows about a lot of these. They've heard of some of them tonight, but you must

25

please keep in mind that I know this hearing is supposed to be only about the Long Term Care office, but this is a real octopus. You just can't point the finger at that particular division. I don't care if you throw $10 million dollars at that particular division. Give them an army of investigators, 16 deputy attorney generals to prosecute just their cases. There are so many other agencies in the state and offices and bureaus that have to be twigged as well. And I have bumped into all of these during my career. And I'm sure many of the people here have also bumped into them, and if those people who can't be here to speak tonight, or have people speak for them bumped into them, they would agree with some of these comments.

For example, the long term care people – I wasn't present at the first two hearings, and I did arrive a bit late tonight, so I don't know if for a fact they actually got to speak for themselves, but I remember when I was a deputy attorney general, and I would always see State officials have to come in front of committees, legislature, senate, and so forth, and quite frankly, the State employees sometimes have to put a positive spin on everything because they are fighting for budget dollars. If they admit that something is bad, it is easily – the finger is easily pointed at them, and they are told, well, you didn't do your job, and they are probably very reluctant to really come out and admit, we've got issues, we've got problems, we need help. And I would bet it you looked at their staffing levels versus case load levels, their investigators, their workers are carrying a tremendous burden. They basically are supposed to work 7 ½ hours a day – State hours, and State holidays, but the nursing homes don't shut down because of the holidays. And probably many of the people in that office are doing what they can with what they've got, and I would hope that people like you go back to your fellow legislators and express to them that this particular office does need some help – probably financially, personnel wise, training wise, etc. But that isn't the only office, because if you are going to have the Long Term Care run properly, you are going to have to have a Department of Justice that also has the capability of enforcing the regulations that the nursing home industry is supposed to follow. And I would venture to say that if you call the Department of Justice and ask them how many deputy attorney generals they've got assigned to Long Term Care, one or two, maybe – maybe. Plus they've got other agencies that they have to answer to. In addition, their investigators from the Department of Justice are limited in terms of – not that they are limited in ability, it is just again numbers. They have a high case load not only involving Long Term Care, but other agencies that they are doing investigations for, so you just can't fix Long Term Care without looking at the enforcement angle of this.

In addition, there are certain regulatory bodies in the State that basically hold certain people in the nursing home industry's feet to the fire. In other words, if these people don't do the job that they are supposed to do, then they can be disciplined in a variety of ways. And I talk about things like the Board of Nursing. If a nurse, a CNA does something wrong, I think if you were to check with the Board of Nursing, it takes a long, long, long, long, long time for any complaint to be processed and actually come up before that Board. And again, it is the numbers game. Some of the people are – they are not even probably getting paid. They are just appointed, and they meet maybe once a month, and they probably have a high case load. But they are the people who say to a nurse, or a CNA, hey, you did something wrong, and you need to be disciplined, or you need more training. But sometimes it may take – I've seen it – one or two years. And sometimes, maybe never before that case comes before that Board. And in the meantime, that person who may have needed more education, needed discipline, they are still working.

The other agencies I've seen things go slow in, is the Abuse Registry. Again, I am not pointing the finger at any of these agencies personnel, saying you are bad people. I am just saying that their case loads are so outrageously large, and their issues so complex, that they probably all need help – financially, and with people in place.

The Board of Medical Practice. If a doctor was to do something wrong involving a nursing home. I believe the legislature has tried to deal with this recently. That particular board – it takes a long, long time to get through that process to even get the case investigated and have a physician have a fair hearing in front of this board to determine whether or not he or she did something wrong.

26

The Ombudsman – I gave them a call after reading the article in the paper after one of the hearings, because I know that my family had called upon ombudsman at one time, and that experience was not a good one, because the ombudsman had come in and started making recommendations, and so forth – this ought to be done and that ought to be one, but in fact, when my family members questioned the person, if they had even read my father-in-laws record (they hadn't), had they ever met my father-in-law (they hadn't). And so I called the ombudsman office a few weeks ago, and if these numbers still hold, I understand that there is two – apparently this is the advocates for people in the State of Delaware who are nursing home facilities. You are supposed to call them and say, hey, I need help. I heard that there are two – two ombudsman in New Castle County to handle those matters. There is one that handles Sussex and Kent County. There is a part time volunteer, and the director, who in addition to administrative duties, also handles ombudsman affairs. So you have a handful of people to handle – I mean, you have heard a lot of complaints tonight. Just think of all the people out there that may call them, and eventually, it might get dealt with, but with those kind of few people – those few numbers, how can you really efficiently have oversight.

I'd also like to mention in particular the staffing, and so forth. For example, the CNA's, and again, there are many CNA's who are saints, but unfortunately, in a lot of jobs, you can have it as a job and get a paycheck, or you can have a passion for it. And it is my understanding in the State of Delaware virtually, or most – I'll stick with most – colleges, technical schools – everybody in the Delaware area has a CNA program. And they market it, and they want people in it. And it is my understanding, if you are a high school grade, in 8 to 12 weeks, you are now a CNA. And many people, perhaps, may be looking at it as basically just getting a pay check, and not really having a passion for taking care of people. And maybe the schools that are getting money from the State that you supply money to in their budgets, need to really screen the people, and the applicants into these schools - and do you really want to do this – do you really know what you are getting into. Perhaps have a long term internship program before them graduate, so they really get a taste of what it means. Because from my experience, these people will end up – they graduate in 8 weeks, 12 weeks, and they are handed so much tremendous amount of responsibility that probably none of us in this room even wants.

Excuse me if there are medical people here. I know that you do it, but I am just talking about it – it is a tremendous amount of responsibility that these people have to care for these residents.

The nursing homes that I have seen – they have one doctor for hundreds, hundreds of people. And in addition to that, the doctor usually has his or her own private practice on the side which has a lot of people. So I ask that the committee at some point look at the doctor requirements at the facilities.

There was talk, questions about ratios. From my personal experience and what I have seen from other people that have come to see me in the staffing requirements, lots of places have weekend shifts. There are nurses that work only 2 to 3 days a week because they are paid the same amount if you work a full week – nurses and some CNAs. And what happens is, these people are basically not there to see the nursing home residents all week, and have a rapport. Note the little idiosyncrasies. They come in for a couple of days, and they might come in the next weekend.

As far as assisted living is concerned, to the best of my knowledge, the federal regulations really don't apply to assisted living. And a lot of the regulations that regulate assisted living has to be formulated at the State level. And I would ask that you take a careful look at the regulations on assisted living and perhaps have to update them at the state level. A lot of people don't realize that. They think that, well, at the nursing home, they've got the same voluminous federal regulations that apply to assisted living. And that is not true.

I'd like to talk to you about liability insurance. I'm sure there are people that are going to say, oh, ok, there is an attorney who wants to make sure that these facilities are in fact insured. Therefore, that attorney can maybe make money by suing them. The fact of the matter is, that with the liability insurance, nationwide, many nursing homes are going down to $25,000 – very, very low limits. They know that in order to bring a lawsuit against them, that those limits

27

– that it is going to take a plaintiff's attorney to get the experts at twice that amount of money. Therefore there is no incentive to take any legal action. Two things that I know that you have to also consider, and everybody should in this room, too, is, if you ratchet down on the nursing home industry too much, is any nursing home really going to build or locate in the state of Delaware, and that is something that has to be dealt with. You have to deal with both sides.

I would just ask the committee to take the approach that if this is a hospital, and you expect certain care out of your hospitals, to apply that same type of thought to the nursing home facilities, and assisted living facilities. I am encouraged, I'm sure other people are encouraged that this committee has met – that you are listening to everybody, but in the future, I hope that we can turn back the page and say, this committee really got it. This committee really told the legislators of the state that we need something changed. Thank you.

Rep. Oberle said he appreciated Mr. Malkiewicz’s comments. Rep. Oberle commented that Mr. Malkiewicz left one segment of the population out, and that is the in-home health care population which the legislature has been trying to regulate over the last couple of years. Rep. Oberle said that is another population that is left naked right now, and perhaps as vulnerable as those that are in full time care facilities or in other facilities around our state.

Sen. Marshall thanked Mr. Malkiewicz and stated that he made notes relating to some of the comments that Mr. Malkiewicz made and he felt it was appropriate to respond.

Senator Marshall made the following statements:

You made reference to the CNA training. Just so you know, in Delaware, we were at one time governed by the federal requirement for Certified Nursing Assistant training of 50 hours. Prior to taking a certification test, and being employed, the State legislature increased the training hours during our initial reform several years ago to a minimum of I believe, 180 hours classroom and clinical training. And then each CNA is required to take a state certification examination prior to. Now, is that enough? Probably not, when you look at the level of care needed to be provided to nursing home residents, but it is surely an improvement over the 50 hours the federal government had in place for CNA training, and that was a cooperative effort between the legislature and the industry in agreeing that something needed to be done.

Another area, you mentioned the Ombudsman Office. Quite frankly, from my knowledge and experience of the Ombudsman's Office, I think it is a weak system that does not really provide the kind of protection necessary. They mean well. The federal government created it, but when you really look at an outcome based system, there is very minimal investigation, and usually very little satisfaction at the end of the process to the resident or the family.

You made reference to the Division, and other branches of our state government being more involved. The Division of Long Term Care Residents' Protection has the sole responsibility to protect against abuse, neglect, and financial exploitation. And furthermore, they have the responsibility of investigation – the annual survey, and serious deficiencies which can lead to referrals to the Department of Justice regarding investigation and prosecution. Usually that doesn't happen. What does happen, former employees or others file complaints directly with the Department of Justice, and sometimes that leads to investigations and as recently, we have indictments. They are allegations, but they are indictments of certain practices in a Delaware nursing home.

We created the Adult Abuse Registry. The State never had an adult abuse registry. We had one for child care. This legislature, my colleagues here, the Senate and the House, created during our first reform of the system, the Adult Abuse Registry. It may not be perfect, but it is working and a step forward.

On the money side, for Medicaid, the legislature increased Medicaid funding. Presently in this fiscal year, the State has committed $77 million dollars to Medicaid reimbursements for nursing home care, which is matched by the federal government at an equal number. So we increased Medicaid reimbursements, and we are trying to keep pace, and provide sufficient

28

income so that staffing can be provided in the nursing homes. Are we meeting the goal? In reality, you probably need a one to five ratio for a perfect system, at 1:8, it is certainly a serious effort in the right direction.

And then you mentioned the issue of staffing. I mean, it certainly is important that the Division enforce Eagle's Law and that those staffing ratios that are in Delaware Law be enforced by the Division. Thank you.

Les DelPizzoSubmitted text (as read) follows. Please note that text within parenthesis are Mr. DelPizzo's added thoughts expressed while reading his submitted letter:

Members of the Committee, other guests, my name is Les DelPizzo. I am the Chief Operating Officer (COO) of Quality Insights of Delaware, which is the Medicare Quality Improvement Organization (QIO) for Delaware.

You might ask why Quality Insights would seek to speak this evening. More bluntly, you might ask why would we care? And who are we?

Answering that last question (who we are) gets right at the heart of the first question: why we felt compelled to present our view. Quality Improvement Organizations are mandated under the Social Security legislation that created the Medicare program. We have multiple missions.

• First, we seek to make sure that the health care provided under the Medicare program meets recognized standards of care. This is a quality mission: was the right care provided, at the right time, to the right person, every time. (In a lot of ways, QIOs are kind-of like quality improvement shock troops – they exist in every state, and we work with a broad variety of providers, and we are one of the few organizations specifically mandated to assist in improving the quality of health care in this country.)

• Second, we are charged with protecting the Medicare Trust Fund. To that end, we actually review a small number of randomly chosen hospital medical charts each month to make sure that the billing associated with that care was appropriate (and that Medicare was not being overcharged. In some cases, we find they were undercharged. Mostly, we are concerned with overcharges.)

• Third, we are a conduit for specific Medicare beneficiary complaints, complaints related to quality of care or appropriateness of discharge (from a broad variety of health providers. If you are a Medicare beneficiary, and you think you were prematurely discharged from a provider association, you could come to us, and we will take that case for you.)

To provide you with a bit more context, we contract with the Centers for Medicaid & Medicare Services (CMS) in three-year cycles we call Scopes of Work (SOW). Our 7th SOW started in August of 2002 (Note: Tape 2 side 2 ended, begin Tape 3 side 1) and ended July 31, 2005; the 8th SOW started August 1, 2005 and will end on July 31, 2008.

In the 7th SOW, we began working with nursing homes for the first time. We were graded on two dimensions:

• How well a targeted, voluntary group of nursing homes did in improving certain quality of care indicators, and

• How well all (remaining) nursing homes in the state did on a (similar) set of quality of care indicators.

Please note carefully that this program is voluntary. We have no leverage over the nursing homes; they choose to work with us or not.

In the 7th SOW, we worked with 22 of the 42 nursing home residences in Delaware. At the end of this SOW, Quality Insights was rated one of the strongest programs in the country for nursing homes. While we welcomed this recognition, our success was actually based on the success of the many efforts of our targeted nursing homes and, because we were graded on state-wide performance, on the efforts of most of the nursing homes in the state. It was the dedicated owners, leadership staff, and direct care staff in these residences that drove our success.

29

In the 8th SOW, we are required to work with 33 out of the 42 residences in Delaware, seeking improvements in the following quality of care dimensions:

• Restraint reduction.• Chronic pain reduction.• High risk pressure ulcer reduction.• Depression.In addition, these residences are seeking to reduce the level of CNA turnover through the

duration of the 8th SOW (because we know that if your could have stable staffing, there is an impact on – ratios, stability, those lead to better care.)

Ten of these 33 nursing home residences have chosen, voluntarily, to become part of our Person-Centered Care Collaborative, an intense, year-long process of learning new skills, putting these skills to work, and changing the internal living environments of their facilities. (Now, I want to just add a couple more statements about that. These nursing homes are committed to looking at how they do staffing, how they do their management, how they organize their meal preparation and distribution, even geographically, and inside their home, how they are going to restructure their homes. We've got 10, this year, we've got 10 nursing homes in this state, looking to make those kinds of changes.)

We can only recruit nursing home residences into these quality improvement activities if they perceive our services as valuable and meeting identified needs. No one holds a gun to their heads. We have to earn the trust of these facilities owners and staffs, while maintaining our professional objectivity and balance, since we deal with the State Survey and Licensing office (which is the Division under review here), CMS, the beneficiaries themselves, and a whole range of other stakeholders.

So, what does all this have to do with this evening, with these hearings? It is unfortunate, if unintended, that these hearings have created a broad perception throughout Delaware that nursing homes are failing miserably in protecting and caring for their residents. We believe that the facts are otherwise.

We believe that the broad-range, voluntary participation in the challenging interventions we provide proves that there is a deep and broad reservoir of caring on the part of the most owners, leadership staff, and direct care staff.

We believe that the steady improvement, with some back and forth over time, (anybody knows) quality improvement knows that these care indicators (go up and down over a period. But what you are looking for is a trend that moves that up and down – up a ladder so to speak. That this steady improvement of the quality indicators) of the nursing home residences we work with and of the state-wide averages shows that the effort of these owners and staff really matter.

We believe that our work supplements the work of the Division of Long Term Residences Protection; they have the power of a legal mandate, while we do not. Both of our efforts, however, are geared to generating improvements in the quality of care provided to residents of these facilities. We have found the staff of this Division to be willing partners and open to working with us-even though they have no requirement to do so. (Let me give you a very concrete instance, of when we had to go to the Division, and what I thought was a very, very good outcome. When we began, when we even thought about beginning, this colaberation for this person center care, we did not want nursing homes to take the energy and the risks that they were going to take to begin this very intense process, and then have the surveyors come in, and say, hey, you can't do x and you can't do y, that would have been putting them in a very intenable position. So I went to Carol and her staff, and said, look, what can we do to avoid that. The first thing that Carol said is, we need to have our staff trained in person center care, in culture change, so she invited our staff to come in and provide her staff some of that training. She did say, however, look, she said, I am not the one that – I am more concerned with what might happen at CMS, if they come in and look at us, and look behind the audit. You know, that told me that I had to get CMS and Carol and her staff together, and actually, we facilitated a seminar that took place in Philadelphia, where a number of the regions got together with other state licensing staff and they talked about culture change and person center care, and how they

30

were going to work together on that. So it is a very, very concrete example. The Division didn't have to do that, and we deeply appreciate it.)

Most importantly, to the concerns tonight, we believe that real improvement in the quality of care provided to vulnerable residents happens when highly committed staffs decide to make it happen and take the time to deepen their skills to enable it to happen. We believe that Delaware has such leaders and such staffs right now.

Unfortunately, an unintended consequence of the activities of this Joint Committee virtually guarantees that many of these highly committed, deeply experienced people will exit the nursing home community. Each of the members of this Committee knows the value of the saying, "Criticize in private, praise in public." Each of you, if you put yourself in the place of these staff, can recognize that staff morale and energy at most nursing homes in Delaware are tattered and shredding.

It is time to re-consider how far we can go with a rigid regulatory approach and with ongoing legislative tweaking. Delaware has a robust legal and regulatory base to weed out the truly hurtful owners and staffs. We must not abandon regulation that protects the health and safety of vulnerable residents. We must leaven that regulation, however, with the recognition that hard-working, caring staff can learn from mistakes, can change the culture of their residences, can be very creative in making improvements in the lives of many long-term residents.

Let's "criticize in private" by letting the Division focus on those ownersand leadership teams that are not committing to continued improvement, by its using regulatory power to push the reluctant into improving or leaving the nursing home community. A more targeted regulatory approach, focusing only on more harmful practice, may lead to fewer citations, but greater impact, especially when backed up with clear and timely sanctions. (Both of those are important – clear, and timely.)

Let's "praise in public" those surveyors and nursing home staffs that come to work every day in the belief that what they do matters-especially because it does. Thank you very much for this opportunity.

Rep. Valihura asked Mr. DelPizzo how the organization is organization funded.

Mr. DelPizzo replied, “We operate on 3-year contracts, I said, with CMS. Our funding actually comes from the Medicare Trust Fund. Congress allocates an amount out of that fund every year….We are a non-profit corporation … we 've had the contract here in Delaware for probably 18 years, plus.”

Sen. Marshall stated that the JSC does take seriously the responsibilities and the concerns expressed by the witnesses. The Senator stated the Committee will continue to deliberate. Sen. Marshall thanked everyone for their attendance. IV. AdjournmentThe JSC will hold a Public Hearing regarding the Delaware Transit Corporation at 5:30 pm, on Wednesday, April 5th at Legislative Hall.

The meeting was adjourned at 8.35 pm.

The following comments were submitted in writing to be included as part of the record of this hearing:

Raetta McCall:

A few of the things observed at Hockessin Hills Nursing Home are:Last year there was a spate of "falls" by patients. I saw at least 6 patients with bruises &

cuts about their heads. I was told they "fell out of bed" or "lost their footing when going to the bathroom. This took place within a 3 week period and stopped as suddenly as it started.

The patient visited regularly often does not have socks on which annoys her greatly. Much

31

of the time, she does not have a bra on. I buy her socks & bras. I have bought her as many as 3 bras at a time & she still does not have any. The explanation to me is "their in the laundry". Her glasses and upper teeth were lost in Feb. 2005 and still have not been found or replaced, although I have repeatedly asked for them.

Her hearing aid was lost in 2004 and still has not been replaced. Many mornings when I get there at approx. 10:30 AM she still has not been gotten out of bed and dressed. The person who is supposed to get her up and dressed has quite often explained that they are short-handed and just hasn't had time to get her up.

One day last month when I went to visit my patient, as I entered the room I could hear a gurgling sound while I was in the doorway. Her bed is at the window side of the room. When I got close to her, I could hear that the sound was coming from her. I went to the nurses' station and told the on-duty nurse about it. She immediately came with me and listened to patient's chest. She looked rather surprised and told me that the patient had bronchitis and she would call the doctor. Why had no one noticed this before I got there and what would have happened if I had not been there? I am not a nurse but could tell something was wrong with the patient.

The VA Nursing Home is another place that I visit. The person that I visit had since died, but during the years that I did visit, I would buy him clothes and things, but I never saw any of the clothes on him. The aides would repeatedly tell me he needed clothes.

I would take him little gifts that always disappeared. When he died and I went to claim his effects, the radio that he had had for the whole time he was there had somehow" disappeared". His wedding ring vanished two years ago. His wrist watch vanished last year.

Several times, I found him hanging half in bed and half out and had to get someone to put him back in bed. Several times I found that he had wet himself and was laying there in bed in his own urine.

Many times the floor beside his bed would be so sticky from where he had spilled something, that I would stick to the spot where I as standing.

(Additional written comments by Raetta McCall follow.)

It is not just elderly. Placed my now deceased husband in Green Valley Pavilion in Smyrna to have rehabilitation as he was in wheelchair and paralyzed on one side. In less than 1 week the physical therapists helped him to transfer from wheelchair and even sit correctly. Very pleased. He made visits to relatives. But nursing home (NH) side was horrible. His paralyzed arm swelled 3 times its size, turned black and his fingers turned black. He was confined to bed. The NH did not send to hospital. (We kept asking for help from them.) A week later the NH sent him to hospital in critical condition and doctors did not believe he would make it through the night. He did not ever left the hospital.

When I spoke w/an aide at the NH she said they did not send him until his temperature was over 103. As I was walking out of the NH I overheard 2 employees discussing the ecoli bacteria in the home. I made a formal complaint and response was that they had investigated and found nothing to substantiate my complaint.

Money Follows The Person needs to be an option for Delaware which would provide the same money given to Nursing Homes to enable patients to have needed services in the community setting.

The disabilities community has worked hard to have MFTP initiated in Delaware as well as on the federal level. What is the problem that this hasn’t happened? Let’s debate it, not ignore it. This could offer one-on-one care and assist families that would choose to keep family members closer. I would expect no less than positive comments from the nursing home industry. However, the public seems to disagree with such.

Kathy Rowe

My husband (Steve) was admitted to three different NH (nursing homes) in Pa (Pennsylvania) and Md. (Maryland) after his accident September 13, 2003 left him with a brain

32

injury requiring rehab and F/U NH. Being in Bryn Mawr Rehab he was transferred to Main Line Nursing Home/Rehab Center. With Steve’s condition it was difficult to place him in a NH environment due to BI combativeness and constant care. Also there are very few facilities that take BI. If placed in a center most are placed in an Altzheimer (sp) ward in NH. In Steve’s case Main Line agreed to take him putting him on that floor. As I was toured thru the facility by the clinical coordinator I spoke with the DON. I was explained rules and regulations. My reaction to a NH for Steve was beyond a defeat for him being cared for. As I was leaving him that day I was devistated (sp), hysterical and felt helpless and hopeless, comforted by staff that everything would be alright, he would be cared for. Steve was placed in a private room with the intention of being moved the next day to Altz. Ward. Upon arrival Steve had no bruises, scratches, etc on his body. The next AM I came to NH and noticed he had a bloody nose and scratches, with bruises. Reported incident with no explanation. Had DON check Steve and supposidly (sp) reported incident. Was transferred that PM to ALtz floor. Met with social worker, general manager, Dr., and staff that day. Each day after I had seen Steve not being dressed, bathed, shaved or fed. Many bruises appeared, arms, chest, face, shoulders. Also he was once lying down in bed flat with feeding tray above him – lunch tray. As I approached the room he was pulling chicken off the plate eating himself. I immediately notified; nurses, aides of him left alone and could aspirate. Many times before he aspirated being hospitalized. I received a call that Steve was punched in the face by another pt. Face was hit with blood and open scar on nose. Incident was reported and other pt was being watched with 1 on 1 basis and told to stay clear of Steve. Story was Steve ran into his wheelchair in the hallway, pt got mad and punched Steve. Other incidences included not changing diaper and bathing. Every visit got worse, reported each incident and threatened to take Steve out and report to the State all these issues. Was asked by manager and DON to give them another chance. Reported incidences to Div of Aging his care at NH since he was there. Never heard from her again.

I believe that Steve was neglected, abused, uncared for by this NH staff. NH assured me that they were trained and could care for him. As seen, not one staff aide was able to care for him or have any compassion or understanding of a BI pt’s behavior and care. BI pts have no facilities to be cared for except few facilities with limitations. Bryn Mawr rehab should be awarded for their care and compassion along with understanding how to deal with BI. All NH’s should be trained to care for BI and not lie to spouse or family that they can. Please respond to my issues. Thank you.

Loretta Martin, daughter of Pauline Barrow

RE: Death of Pauline W. Barrow, 79, of State Street Assisted Living, Dover who died on January 31, 2006 at Bayhealth Kent General Hospital

My mother, Pauline W. Barrow, was a resident of State Street for about 15 months. Over the course of that time I had written emails, letters and arranged visits with the director, nursing director and director of Primrose Lane regarding my mother’s routine with regards to hygiene, which included: cleaning of the apartment, assisting her in changing her clothing more regularly, cleaning her dentures daily (which were not done unless I did it), checking her bed each morning after she made it to be sure it was clean, checking her bathroom to prevent her from showing in a dark shower when the light bulb burned out, nightly mopping up water outside her shower so she wouldn’t slip and fall, and techniques that were being employed to assist her with daily tasks so not to create a confrontation with her, but to assure daily hygiene was being done.

My mother suffered from Alzheimer’s disease, diabetes, and had developed Parkinson’s on her left side. She lost about 20 pounds from the time she moved into the facility in November 2004 until her spring doctor’s appointment in @ March 2005. I had expressed concerns about that and asked if assistance was being provided to help her cut her meals. Each time there was an appointment with the directors, everything my sister, niece and I observed was disputed by the directors and they would give the same story about the weekly cleaning and laundry that

33

was being done. (Oh, that was always noted on a documentation sheet, whether it got done or not). This was always a different story than what I got when I spoke to the aides that were directly working on Primrose Lane. They would tell me that my mother wouldn’t let them clean the apartment or that she wouldn’t let them assist with denture cleaning and I would always point out dirty laundry or linens (sheets, blanket or bedspread with feces or urine) that needed to be washed. Let me explain that Primrose Lane is the hall where Alzheimer residents live and supposedly get much closer supervision and assistance, although, I regularly observed residents just sitting in front of a television, whereas, my mother preferred to stay in her apartment. On one occasion in the summer, I noticed that my mother’s linens had been stained with urine, which looked like she had been sleeping on them for some time without anyone checking behind her bed making. I removed the linens and brought them home to be pre-spotted and cleaned. I had also removed her blanket and bedspread in the fall and presented it to the aides to wash because it looked as though feces were on them. Now understand that a nurse or nurse’s aide would come into her apartment several times a day to administer meds or check her blood sugar. To my amazement, no one noticed the feces on her bedroom slipper or the back of her slacks (which my husband would pre-spot and laundry), no one supervised her showering or gathering her dirty laundry while she was in the shower as I had suggested as a technique to help force her to choose clean clothes to wear. I also noticed that her bath towel and face cloth also looked quite dirty and it was always the same towel hanging in the bathroom even though she had three sets identified with her name on them. Her room mate was in a wheel chair, so the aides bathed her, but there was always only my mother’s bath cloth in the shower, so I’m not sure what was used to bathe the room mate, unless the same bath cloth was being shared between the two of them. Since they both had alzheimer’s disease, they wouldn’t have a clue.

As recently as December 28, I went into her apartment and noticed feces around the toilet, on the floor and across the living room carpet where she had tracked it across the apartment. I have photos of this. Immediately, I took her soiled slippers and made her change her night gown so I could take these home to be cleaned. I also immediately notified the aides to get the carpet and bathroom cleaned and the nursing director of the condition of her apartment. I know she didn’t get supervision at bath time and that no was still checking her bed, because I would tell the aides on duty when I saw soiled linens.

On January 29, I got a phone call from State Street a 4:20 p.m. for permission to call 911 to transport her to the hospital or for me to come get her. My niece and I arrived there about 20 minutes later and transported her to ER in Kent General, where she was diagnosed as being septic, with partial kidney failure. She was admitted Sunday evening into the Intermediate Care Unit. Her blood pressure was extremely low and her oxygen levels were also low. On Monday the hospital was awaiting her condition to improve so they could perform a CAT scan. At 2:20 a.m. on Tuesday morning I got a call to come to the hospital. Her condition had worsened and my sister, niece and I were by her side when she passed away at 3:10 p.m. The next day at the funeral home the director presented us with the cause of death: Septic Shock caused by Renal failure, which was caused by EColi bacteria.

After returning to State Street and speaking with the director and aides, the director told my niece and I that Sunday her blood sugar was high and after administering insulin it wouldn’t come down. However, the aides told me that on Sunday starting at 8 a.m. they had been calling for the nurse because my mother was not herself and would not go to meals or even have anything to drink. One of them, Ebba or Carla, had even tried to force her to take sips of Ginger Ale. They said the nurse just kept taking her blood sugar and giving her insulin, but until the duty nurse changed at 3:00 no one ever took her blood pressure, which was extremely low. They even made her walk upstairs into the elevator to the nurse’s station for that instead of the nurse coming down to attend to her. We almost had to carry her out when we arrived. She wasn’t capable of walking.

My family and I feel that her death was preventable. She was not sick! I feel that as a resident her hygiene conditions were neglected even though I wrote repeated emails and letters to the director of Primrose and the director of State Street. Since she was paying for closer

34

assistance as an Alzheimer’s patient there should have been procedures in place to deal with those residents to be sure they were clean, their linens were checked and cleaned more often than once a week, and reminders for washing their hands before meals. Although my mother was somewhat independent about caring for herself, she needed closer supervision, which is why I choose assisted living since I couldn’t provide that for her on a daily basis and work outside my home. By the way, the stinch or urine smell of the Primrose Hall met you when you approached the doors to the hallway and continued down the hallway. I had also discussed this with the director, since that indicated a dirty unsanitary environment. She attributed it to a particular resident’s apartment and the soiled laundry near the door entrance of the hallway. Amazingly, that odor was not there when I visited as a prospective resident for my mother or when I moved out her things and the apartment was being shown to other perspective families.

I do have copies of my emails, my letter to Mary Jane Copes, and photos of the feces on her mattress cover, apartment carpet, towel and the door and furniture in her apartment. Although I heard from the aides about the odor in her apartment, no one looked close enough to see what was there. When I notified the nursing director that my mother died from EColi bacteria, she seemed unfettered and said she probably gave it to herself, well, imagine that, living in an apartment which is kept at about 78 degrees and feces all over the place. I wondered if this is common there. I also discussed with her the likelihood that my mother’s bath cloth was used on the other resident, which was a dirty and unsanitary situation and that the aides should pay closer attention to those matters.

Please let me know if you are willing to meet with me, my sister and my niece to discuss whether there is a case for negligence leading to death. Thank you.

March 29, 2006/dap

35