1 Welcome to today's CIL NET teleconference and webcast: Paving the Way for Nursing Home Transition. Presenter: Judy Roy. >> OPERATOR: Good afternoon and welcome to the National Council on Independent Living conference call. Today's host will be Tim Fuchs. During the discussion, all participants will be muted. If you have a question, you may press 0 and then a 1 on your telephone keypad. You will be able to ask your question in the order it was received. Now without further delay, I'll turn your call over to Tim Fuchs. >> TIM: Thank you, Lisa. Good afternoon and welcome to today's CIL NET teleconference and webcast, Paving the Way for Nursing Home Transition. I'm Tim Fuchs, operations director at NCIL, and staff member of the IL NET project. Today's teleconference and webcast is brought to you by CIL NET as I mentioned, and that is a program of the IL NET, national training and technical assistance project for centers for independent living, and sister project for Statewide Independent Living Councils, the SILC NET and the program is operated by the ILRU program at Memorial Hermann/TIRR in Houston, Texas in partnership with NCIL and the Association of Programs for Rural Independent Living, APRIL. Substantial support for the development of the presentation has been provided by the U.S. Department of Education, RSA, Rehabilitation Services Administration, under Grant No. H132B070002. No official endorsement of the Department of Education should be inferred. 2 Please be aware that we are recording today's call and that it will be archived on ILRU's website. Also as Lisa mentioned, all of your lines are now muted, but you will be able to ask questions once we begin our Q&A session by pressing 01 on your keypad or for those of you participating by webcast today, you can ask questions by using the E-mail A Question feature on your webcast screen or simply by E-mailing me directly, and my E-mail address is tim@ncil.org. You can do that to ask questions during the call or if you have any follow-up questions that you think of during or after the call, don't hesitate at all. All questions sent to me will be relayed live on the call as time permits. If there are any that we do not have time for, I will respond directly to you; and if I can answer them myself, I will. If they are content-related, I'll pass them along to our trainer. The materials for today's call, including the PowerPoint presentation and an evaluation form, are on our website. And I'm going to read this url twice. You have a chance to write it down if you don't already have it. This was the same url that we sent out in our confirmation letter so hopefully you all do; but that is http://ncil.org/training/pavingthewaymaterials.html. One more time that's http://ncil.org/training/pavingthewaymaterials.html. And that is all lower case, and when you get to that page, it has all the connection information which if you're listening right now you've already done so, and all the materials for today's call. For our webcast participants, I hope you've already seen the introduction screen for the PowerPoint presentation and that displays automatically and will move through the slides automatically as we go 3 through today's presentation. For our teleconference participants, if you have not already printed out or opened the PowerPoint presentation, you will want to do that as we go through today's call. And again, that was also sent to you in the confirmation E-mail and also on the website. So if you haven't printed or opened the PowerPoint presentation, please do so now. Also take a moment after today's call to fill out the evaluation form, if you would. It only takes a few minutes to complete, and while I really encourage everyone to fill it out individually so that we get as much information as possible, it may be helpful to discuss the presentation among yourselves as a group if you are participating with others from your center or SILC today and to talk about what you thought how the call might be improved and to consider those thoughts when you fill out the form yourself. We do review every single evaluation form and that feedback weighs heavily on us as we plan future events. So without any further ado, those are our announcements and I want to introduce you to today's presenter. She is a CIL employee, an IL advocate and an expert on nursing home transition and community living options for people with disabilities. Her experience runs the gamut at the local and national levels, and I'm very glad to have her here with us today. So I want to thank Judy Roy who is nursing home transition coordinator at IL Resources of Greater Birmingham for being here today and without any further interruptions from me, let's get to the presentation for today. Judy... >> JUDY: Thank you, Tim, and welcome everybody. Before I start, let 4 me give you my E-mail address in case there is a question that I don't get around to answering or that time doesn't permit. You can reach me at bhamilc1@bellsouth.net. Let's dive right in now with our learning objectives. This is slide No. 2. The description of the strategies for locating and connecting with the individuals who are wanting to transition out of the nursing home. Outreach strategies are going to vary from state to state. What works in Alabama may not work in another part of the country. Our initial contacts came in the form of letters sent to administrators or social workers. We followed up after about three or four days with phone calls to ask for a face-to-face meeting. I don't guess it really should have come as that much of a surprise to us, but nursing home administrators or social workers just couldn't find time in their busy schedule to meet with us. Oh, we started saying that we were going to be in the local area in the next week or so and we'd like to drop by when we were in the area but weren't asking for specific appointment times. That way it made it harder for them to avoid meeting with us. In North Carolina, the CIL up there offered CEU's for a training on transition. In Utah, the CIL worked with or partnered with the Area Agency on Aging to identify transition candidates. I don't want to get delayed, but building relationships with the consumer and the family and the nursing home staff will take time and there is a saying that is trust only movement. Life happens at the level of events, not of words. So many consumers aren't going to trust you until after they have crossed the threshold of the nursing home. Then they'll 5 believe that you are going to do for them what you've said that you would do. I can't stress enough the importance of listening. There is only one first impression, so you may not want to spend your first meeting with the consumer taking a volume of notes. Instead, spend that time listening to the consumer, watching for cues and picking up on what is in their tone of voice. You can make your notes when you get to the car in the parking lot. Some questions are going to be difficult to ask but have to be asked so that you don't waste time and these are better asked at your second meeting with the consumer maybe. Those questions may be, have you ever declared bankruptcy? Have you ever been convicted of a felony? Have you ever been evicted from Section 8 or public housing? Or if there are any legal actions pending against you? I've found that if you develop a good relationship with your nursing home ombudsman, they can help you bridge the rough spots that will occur between you and the facility or the facility staff. Family involvement can range from anything from open opposition to strong support. The family may have agonized over placing their loved one in a facility and may just be coming to grips with it when along you come and offer them hope. Talk about an emotional roller coaster. Other residents you will meet may have burned their bridges with their families and friends. The family may no longer want anything to do with them. Open and honest communication and participation, your flexibility can help to overcome those barriers. Slide 3, the Supreme Court decision known as Olmstead vs. L. C. has 6 changed the landscape for disability advocates. It provides the framework for advocacy to support the person with disabilities and their move back to the community. Olmstead also supports the right of people to remain in the community and not have to be placed in institutions, the mandate of the Americans with Disabilities Act requires public agencies to provide services in the most integrated setting appropriate to the individual's needs. Under Title II of the Americans with Disabilities Act, states are required to place persons with disabilities in community settings rather than in institutions when the state treating professionals have determined that community placement is appropriate and the transfer from the institution into a least restrictive environment isn't opposed by the individual themselves. I can't imagine that they would oppose it, but some people prefer the safety -- quotation marks -- safety of the facility. And when that placement in the community can be reasonably accommodated. Slide 4, it's important that you understand some of the laws and the Supreme Court decisions that have established the national legal framework for what you're going to be doing. The ADA, the Americans with Disabilities Act, was a huge breakthrough for people with disabilities. The Olmstead decision was based on the ADA. In 1990, President George H. W. Bush signed the ADA into law. Advocates are able to use the Americans with Disabilities Act to challenge states that only provide supports and services through institutions. That meant that only the people with disabilities were living in segregated settings. Advocates urged states to follow the law and provide services in a more integrated setting. 7 Slide 5, Lois and Elaine are two women with disabilities who live -- lived in Georgia. They asked state officials to allow them to move into the community and the state refused. A legal aide named Susan (inaudible) from Atlanta filed suit on behalf of these two ladies. In the suit against the state of Alabama -- the state of Georgia, I'm sorry. I'm in Alabama -- the two hospital residents wanted to live in the community and one had mental retardation and the other mental illness. They claimed that living in the nursing home deprived them of their rights under the ADA to live in an integrated setting. The attorney for Lois and Elaine argued that they had the right to receive services in the community setting under Title II of the Americans with Disabilities Act. The act requires entities to provide those services in the most integrated setting for the needs -- to meet the needs of the qualified individual. The state argued that Lois and Elaine were placed in the facility so that they could obtain the services, but doctors for the two ladies disagreed and said that they were able to provide the services in the community, that services were being provided to other people with similar disabilities in the community, and in July of 1999, the Supreme Court issued the L. C. decision. The court ruled in favor of Lois and Elaine, affirming that these were individuals who could -- whose needs could be met in the community. The court noted that institutionalizing people with disabilities who want to live in the community and could benefit from it is discriminatory. Slide 5, the decision says that the decision is a victory because it upheld the mandate of the state program to be conducting services in the 8 most integrated setting. The Olmstead decision further focused on the importance of community living for people with disabilities and extended the earlier efforts of the ADA as well as the Developmental Disabilities Act and The Rehabilitation Act. Going on to slide 7, what the decision means, it changed the debate. The Olmstead decision changed the debate from should people with disabilities live in the community to how do we integrate people with disabilities into the community? The decision means that freedom and independence are possible. The 1999 Supreme Court decision found that the ADA forbids states from institutionalizing people with disabilities of any age if they can live in the community with the right mix of cost effective community services. Freedom and independence are possibilities, but advocating for them is hard work. Slide 8, what is a successful transition? It's crucial to remember that a successful transition is much more than changing where someone lives. The move from the community -- from the nursing home to the community is more than physical change. It includes an increasing sense of self-direction, of decision-making on the part of the individual who is transitioning. It often means not only changing where one lives, but changing the way one participates in community activity. Living in the community means developing and using informal supports as well as more formal supports and services. As a transition facilitator, you are not solely responsible for the success of this transition, but you do have a critical role. The success 9 is also dependent on the person themselves and their willingness to take a proactive role. Continuing with slide 9 and the role of the transition facilitator, you're going to have multiple roles. Some of the things that you're going to be involved in is you're going to have to become a mentor, a peer mentor to the transition consumer and supporting their right to reclaim their lives in the community. But you need to remember that it is their life, not yours, and they need to be directing what's happening. Understand what brought the person to the nursing home, some of those issues may pose barriers to their successful transition back into the community. As I said before, being a good listener and paying attention to the cues that the consumer will provide themselves to you. You need to understand that in the nursing home the consumer has been alone. And that's difficult to wrap your brain around sometimes because here they are with all of these other people, but all nursing home residents will have experienced loneliness. They will have been deprived of a close one-on-one relationship. They are excluded from family activities and gatherings and they are alienated from the community. They are unloved by any of those who are close around them, and they are alone. They may have no say in what's going on and all of the decisions are being made by the nursing home. As a result, they may be experiencing low self-esteem. They may have become passive. They may be experiencing extreme isolation. Slide 10, transition facilitators. A facilitator is someone who aids or assists in the process, especially by encouraging the people to find their own solutions to the problems at hand. The facilitator is a partner 10 with someone who has a disability and wants to return to the community and the facilitator is a peer, a peer mentor in that process. I have one staff member who works for me who has cerebral palsy and she has -- she uses a cane. One day when she was at one of the facilities, she tripped over a floor polisher and a new staff person was helping her to her feet and she asked her, what's your room number. I'll help you back to your room. I guess that would be considered as being accepted as a peer. We cover a five county area from this facility and peer support is something that we rely on very heavily. We've tried to promote that by identifying peer supporters for every one of our transition consumers, but one of the things that's worked best for us is a monthly peer support teleconference that we do. And we have participants in nursing homes from Mobile, Montgomery and the greater Birmingham area who are online for those calls on a monthly basis. A transition facilitator has to be knowledgeable about the types of services and supports that are available in the community. A transition facilitator is a generalist, a person with a wide array of knowledge about community supports and services, such as Medicaid waiver services, SSI or SSDI, durable medical equipment and funding resources for durable medical equipment, Section 8 housing, transportation resources and community medical services. Providing accurate information is invaluable, but you also need to be very cautious in that you don't overpromise what you're going to be able to accomplish. You need to explore the options with the person, but don't push what you think is best. The consumer, their family, they will look to the nursing home transition facilitator to address any 11 number of concerns in the planning, the move back to the community. The issues will be different with each consumer, but health and safety are fairly common ones and families are very anxious and concerned about their loved ones' health and safety. Equipment, medication assistance, personal assistant services are some other frequent issues that will arise. And Tim, is this a good place to take a break for questions? >> TIM: It is. We're right on time. >> OPERATOR: If you have a question at this time, please press 01 on your telephone keypad. Your first question comes from Diane. Go ahead, Diane. >> CALLER: I'd just like to know where I can find the slide that she's using. >> JUDY: I'm sorry, Diane, I didn't catch your question. Can you repeat it? >> CALLER: I just wanted to know if there is a way for me to go on the web to get the information that you are using for the presentation? >> TIM: Yeah, Judy, I can answer that one. This is Tim. Diane, I did respond also with the web link, but let me give that one more time in case anyone did not get it. Again, this url should have been E-mailed to you and the materials should have been attached to that confirmation E-mail. Please, if anyone else on the call did not get those materials, let me know. Again, that url is http://ncil.org/training/pavingthewaymaterials.html. I'll read that one more time. Http://ncil.org/training/pavingthewaymaterials.html and when you get on 12 that page you'll see the information -- the links to connect to the webcast and you'll also see a heading called materials and both materials are available in PowerPoint -- excuse me -- pdf and also in text, if that helps. Do we have anyone else in the question queue? >> OPERATOR: Yes, the next question comes from Sue. >> CALLER: Actually it's from one of Sue's group. Judy, the last thing that you were mentioning was about the importance of personal care assistants in the home, and I know this probably differs from state to state. I run a consumer-directed program here in New York State and there are some questions about the difference between or who can use what. If you go into the nursing home transition and diverse waiver here and you get an HCSS, then can you get PCA level of care from the HCSS person? They can also provide that, but in consumer-directed, the consumer-directed aide can perform tasks that go beyond that traditional PCA level of care. So there is kind of like -- I feel like there is competition being set up. I've already had this start with one consumer who has been in my program now for several months. And now the NHTD facilitators here in the Hudson Valley are questioning her -- they may just take her out of consumer-directed and move her into the waiver and only give her the HCSS support, and I'm questioning that. Do you know anything more about this? >> JUDY: Sue, what you initiated the question with will have to be my answer back to you. There is a great difference between what you may be able to offer through your waiver program in New York and what we can offer here in Alabama. As you probably are aware, waivers are just that, they allow the state Medicaid agency to waive the mandate for nursing home care. 13 And each one of the waivers is a carve out, and with each waiver they ask -- the state agency asks CMS for a number of -- an arbitrary number of people to be served under that waiver, and they design what the eligibility criteria for each of the waivers is in their application to CMS for the waiver. I wish I could give you some better guidance on that, but that's what I've found here in Alabama. >> CALLER: Did you have a situation like that in Alabama similar or (inaudible)? >> JUDY: We do have Cash and Counseling available in a limited area in Alabama. We have consumers who are receiving services under one waiver -- and our experience has been that as someone's abilities and say if they've had a stroke and some of their physical abilities return, but they were receiving services under a waiver that provided a more enriched menu of services that as their abilities changed and increased, that they wanted to -- they, the state of Alabama, wanted to change them to one of the waivers for elderly and disabled that did not have the same enriched program of services. >> CALLER: Okay. Thank you. I know it's very different everywhere. (Inaudible) in a way. >> JUDY: It would be nice to have conformity across the country, but regrettably that's not the situation. >> CALLER: Thank you. >> OPERATOR: The next question comes from -- do we have any questions on the web? >> TIM: No, we don't. Thank you. 14 >> OPERATOR: There are no further audio questions at this time. >> TIM: Judy, before we jump back into the presentation, I just want to address that we are currently on -- about to begin again on slide 15; is that correct? Getting individuals who wish to transition. >> JUDY: I am at -- in my slides at slide 12. >> TIM: Which is titled? >> JUDY: Critical components. >> TIM: Thank you. I just wanted to get back online with myself and our participants and we will start there. And for our participants at home, critical components that contribute to success is slide 10, Judy; is that right? >> JUDY: Yes. >> TIM: Okay, thank you. >> JUDY: Rob, are you with us? >>Rob: Yes, ma'am. >> JUDY: And the slide is titled Critical Components and we're going to talk about developing a trusting relationship. When we were talking earlier, I talked about that first meeting, not to sit there and take a volume of notes, but to allow the first meeting to be relatively informal and to give your full attention to the individual. To be able to relax and to keep eye contact with that individual and to nod while they are talking so that they understand that you are hearing what they say. When you are doing your assessment, you are determining what the needs and the concerns and the priorities for that individual is. One of the first steps in doing that is to get to know your consumer. 15 Hello? Hello? >> ROB: Judy, go ahead. We're sorry for the interruption. >> JUDY: I'm sorry. I thought I had lost you. Determining that the family supports the move back to the community, training may be needed in the roles, the response of a personal assistant, but you're only going to learn what the consumer needs and what their concerns may be if you talk to them. They may need food stamps or housing assistance or Social Security, but you have to take the time to ask the relevant questions and to hear the consumer's answers. The transition plan should address the issues and the concerns that come up in your interview. I had this one consumer when they were getting ready to transition had their (inaudible) lift while they were in the nursing home, but during the time that they were in the nursing home, the nursing home had replaced the sling for the lift. When they got ready to leave, the nursing home kept the sling and the consumer left the nursing home with just the lift. I have some what I call threshold issues or rules. I never transition a consumer on a Friday. Why? Because everybody that you will need in case of an emergency has left their office at five o'clock and they are not going to be back until Monday at 9, or if it's a legal holiday, Tuesday at 9. I always make sure the consumer, when they cross the threshold, has enough medicine with them to last them until their first doctor's visit in the community. There are two guiding principles, self-determination and the dignity of risk. Now, these two principles for me should be chiseled in tablets of 16 stone. You need to let these be foremost in the transition process and in your planning. Self-determination is the ability or the right to make your own decisions without interference from anyone. In the nursing home, the resident has very limited control over their day to day lives and they may share a room with another person and they weren't even asked in many instances about who their roommate is. Many nursing homes have beautifully manicured grounds, but very few of them allow the resident to access those. So self-determination includes such basic rights as making your decisions about your future, what support services you want, where you want to live, how you want to spend your money -- that's a biggie. Self-determination also implies that an individual can make choices based on options. A critical aspect of self-determination is the individual's responsibility though for the choices that they make. The resident who has -- who may have been in the facility for any length of time may have developed learned helplessness. With time, with patience, they can relearn to trust their own decision-making. The nursing home resident should have the dignity of risk, which means making choices about new experiences and responsibilities. The concept of the dignity of risk is crucial in development. We grow by the choices that we make, and sometimes by the result of the choices that we've made. We learn from our successes as well as our failures. If individuals make choices and try different activities, they will learn from these experiences. Taking risk is just part of life and you need to discuss with them the risk taking, but allow them the decision-making. We're continuing on self-determination. The nursing home environment 17 provides little opportunity for self-determination. That might even carry over into what the menu is. The choices are made for the individual when they are going to take baths. Most people -- most nursing homes allow residents to bathe three times a week. I remember one lady who said that she had taken three baths in the first day she was out of the nursing home. It's sometimes challenging for the individual who has not been allowed to make decisions in many, many, many years to suddenly be told that they are going to take charge of their lives. With most, self-determination is a process, and you as the facilitator will need to support the individual as they resume taking control of their lives. Slide 15, the dignity of risk. In the nursing home and in other residential settings, safety and protection are paramount to the facility because of liability and to the family because of their concern for their loved one. Someone argued that the facility is overprotective, that they smother the person, that they squeeze the life out of their hopes and dreams. Most of our best achievements have come the hard way, and we took risk and fell flat on our face, but we dusted ourselves off and picked ourselves up and tried again. Of course we're talking about taking calculated risk, prudent risk. People should not be expected to face challenges blindly without enough information. The real world is not always safe or secure or predictable. Every day we face being thrown into unknown situations that are risky. In the past, we've found clever ways to build avoidance into taking risk. With these two principles to guide your interaction and your assessment, the transition activities, you support the individual's move into the community and the long term ability of the 18 individual to stay in the community is strengthened. Locating individuals who wish to transition. Under the federal Older Americans Act, every state is required to have an ombudsman program. With Partnerships to Independence, my particular project, we have found that ombudsman to be an invaluable resource. The ombudsman is an advocate for the resident living in the long-term care facility. The ombudsman assists the resident and their loved ones to voice complaints and to have their concerns about the facility addressed. They protect the dignity and ensure that the nursing home resident is respected. Another way that you can locate transition consumers is -- there is an assessment that every nursing home resident has to undergo when they are admitted. The multiple dataset is a federally mandated process or clinical assessment of all residents and must be completed within 72 hours of their admission to a certified nursing facility. The MDS information is consolidated for all of the nursing homes in the state and it's provided to -- in the form of a report to CMS. Q1a of the multiple dataset summarizes by state and county the percentage of residents who have answered yes to Question 1a. Question 1a reads: Resident expresses or indicates a preference to return to the community. You can access the MDS information for your state from CMS' website. When I was preparing for this presentation, I went up there to look at the second quarter report for Alabama, and what I saw was that there are 3,910 nursing home residents in Alabama who have expressed a preference to return to the community. Of those 3,910, 580 of them are residents of 19 Jefferson County, the county where my center is located. The Nursing Home Reform Amendments Act of 1987 requires that nursing facilities promote and protect the rights of each resident. The law requires nursing homes to care for a resident in a manner and in such an environment as will promote the maintenance or enhancement of the quality of life of the resident. The law requires that the nursing home provide services in the highest practical, physical, mental and psychosocial setting to promote their well-being and in accordance with a written plan, that is the MDS assessment. The law makes residents and their advocates participation in that planning process a requirement. The law also says that the nursing home ombudsman has access to this information. I'd like to give you now a very important resource on nursing home rights, the National Citizens Coalition for Nursing Home Reform. It was formed because of public concern about the standardized care or substandard care in nursing homes and is an excellent source of information on the Nursing Home Transparency Improvement Act, staffing ratios, advocacy, restraint free care and other issues around nursing homes. The nursing home Bill of Rights, for those of you from areas with high population of Asians or Hispanics or other ethnic populations, the resident has a right to daily communication in their own language. So if you as a peer supporter, as a transition facilitator, is able to converse with the resident in their native language, you may be able to carry on a completely confidential conversation, even when there are others around. Continuing with the nursing home -- with the Bill of Rights, the resident has the right to reasonable visits from organizations such as CILs 20 or other organizations that might be social or legal in their program of services. The nursing home resident has the right to private and unrestricted communication with any person of their choice. The right to privacy in treatment of care as in their personal needs and the right to confidentiality regarding their medical, personal and financial affairs. >> ROB: Excuse me, Judy. Can you tell me what slide we're on? >> JUDY: We're on the resident has a right to -- my number is 24. >> TIM: I believe that's our slide 25, resident's rights to be treated with respect and dignity. >> JUDY: I may have inadvertently deleted a slide. Excuse me. >> TIM: That's all right. As long as we're on track. >> JUDY: But continuing with the resident's rights, there may be some times when you are going in to a facility that you may observe tangible signs of abuse, neglect or exploitation, but you may not have actually witnessed what happened. Risk factors for abuse can be related to facility employees or the conditions within the facility itself or from other residents. When you make a report in a good-faith effort, you are immune from any liability from civil litigation. When you begin the planning process, some residents may express their frustration at the nursing home and as a consequence you may explain that they have received a 30 day notice. You should understand that the resident has rights here also. The resident cannot be discharged without appropriate notice and without being discharged to some setting that provides them with the assurance of safety. The resident's health is -- the resident can only be discharged if the 21 resident's health has improved sufficiently that the resident no longer needs to be in the facility. The health of the individual is -- would be endangered or the safety of the individual is in danger. The resident has failed after a reasonable and appropriate notice to pay for their care. Now, this is of course for self-pay, not for Medicaid admissions. One other reason that the resident would be discharged would be if the facility ceases to operate. You want to stop for questions here, or do you want me to go on about guardianship before we break? >> TIM: Why don't we do the guardianship and then we'll do Q&A. Thanks, Judy. >> JUDY: Some of the residents you may be working with may have a court appointed guardian ad litem. This may be a member of the family or it could be an official of the county or the state. The sponsor's duty is to speak on the resident's behalf and make decisions about care, about bill paying when the resident isn't able to do so. Some nursing homes have attempted to deny advocates access to residents without the sponsor's approval. A guardian is someone who is appointed to act as an administrator for an adult with impaired decision-making capacity. Guardianship orders sets forth the terms of the appointment, it sets forth the types of decisions that that person can make on behalf of the nursing home resident. It sets forth the duration or the time that it will remain in force. Medical situations, medical circumstances frequently trigger the guardianship, but when a person has recovered, that guardianship may not have been lifted immediately. So you may find that in order for the person 22 to become their own guardian or to resume making decisions for themselves, that you may have to petition the court for that to happen. Your P&A, your protection and advocacy agency in your state or the American Bar Association can be helpful in helping you with this. That looks like a good stopping point right there, Tim, if you want to stop for questions. >> TIM: Sounds great. >> OPERATOR: If there are any questions at this time, please press 01 on your telephone keypad. Again, if there are any questions, please press 01 on your telephone keypad. >> JUDY: Do we have any questions that have been E-mailed in? >> TIM: Not at this time. >> OPERATOR: Your first question comes from Nora. Go ahead. >> CALLER: My question -- I got two questions. The first one is why is it so hard once you make a transition from the nursing home for that resident to have a check (inaudible)? >> JUDY: The nursing home, quite frequently, is the recipient of the consumer's check and they will give them -- give the resident $30. In our state it's an allocation of $30 living expenses once a month from their checks. When we have determined that there is an apartment available to the resident, then we will contact Social Security and give them the new address where the person is going to be residing and quite frequently that takes place before the move out takes place. >> CALLER: Okay, you got me. Because I always went after to do the change, to go to Social Security. So that has to be done before? 23 >> JUDY: It does not have to be done before, but we initiate -- I need to stop right here and answer your question in just a slightly different way because when we started -- when we received our grant, we're no longer working under the grant. We don't receive any federal funds. Our agency -- our center has made a commitment to continue one of the systems change grants with how our program started. We identified people that we knew we would be interacting with on a frequent basis and asked them to become part of our implementation team. The Social Security -- a representative from Social Security was one of those people who became a member of our implementation team. What we wanted to be able to do was to call one person within an agency and have them solve our problems, not get put on hold, not get punted from one desk to another desk to another desk or have the phone call dropped. So we developed a very good working relationship with one person within the local Social Security office. And we go to that person for everybody that we transition. So we do have advanced notice a lot of times that the apartment is available. When we get that advance notice, we pick up the telephone and call our Social Security representative. We try -- we do direct deposit and so that's how we work that. Does that answer your question? >> CALLER: That answers my question very well. Thank you. >> JUDY: You're welcome. You had a second question I believe? >> CALLER: That went by. Before the end of the session I will see if I can come up with it. >> JUDY: Okay. 24 >> CALLER: Thank you. >> OPERATOR: The next question comes from Manuel. Go ahead. >> CALLER: I'm asking the question on behalf of Manuel. This is Judy. When you talked about people in nursing homes being -- their rights as far as nursing home residents about being transferred or discharged only for medical reasons and must be discharged to a setting with an assurance of some safety, doesn't that actually become a barrier to helping people relocate when what we found is that is something that is really used as against allowing a person to leave on the part of nursing home staff. Could you comment further on that? >> JUDY: We have never found that it was a barrier. We have found that in supporting legislation that we introduced in hearings, the nursing home (inaudible) brought up the health and safety that they as the beneficent people they are, are only concerned with the resident's health and safety. In order to find waiver services, your state agency has to guarantee to CMS that they are going to exercise quality control over the program. I'm presuming that you as a transition facilitator would not be moving an individual into substandard housing. So in doing an assessment for waiver services, the person who is doing that assessment is going to take into consideration the environment that they will be moving into. So does that answer your question? >> CALLER: Well, actually it was more along the lines of what you brought up earlier about should this person or should some people be allowed to transition to the community because their behavior or their condition or whatever it is that that particular individual has may make 25 them unsafe to be in the community without this 24 hour care. It's something that we've seen can be utilized as a barrier to that individual being determined as a suitable type of discharge. >> JUDY: And when I was citing that part of the nursing home resident's rights, I was referring solely to an individual who may have received a 30 day notice and sometimes those notices do arise out of behavioral issues, but the individual has the right to not be placed on the street, that they can be transferred to another facility while you are working on their transition and developing a program of services and supports for them. >> CALLER: Okay, that's good. Thank you. >> JUDY: You're welcome. >> OPERATOR: The next question comes from Steven. Go ahead, Steven. >> CALLER: Yes, I was wondering, could you go over the section about the Q1a? Because I know in -- that's data that's pretty hard to get ahold of and, you know, we were just wanting a brief synopsis of that section. >> JUDY: Okay, MDS, multiple datasets is an assessment that is required of every admission to a nursing home. That assessment has to occur within 72 hours, must involve the family and the individual to maximum extent possible. Of the multiple dataset assessment, Q1a, Question 1a is that the nursing home resident makes a response that they want to live somewhere else other than the nursing home, that they want to return to the community. Does that clarify it? >> CALLER: Yes, it does, but part of it is how do we go about getting the information from this, you know, from the nursing homes? 26 >> JUDY: You don't have to get it from the nursing home. It's available to you on the CMS website. As I said when I was preparing my presentation, and I do not remember the exact web address, but my E-mail address is bhamilc1@bellsouth.net. After this is over, if you want to shoot me an E-mail, I'll give you that address, but it's not coming to mind that quickly right now. You can find out by going to CMS' website. The total number for your state and find out the total number by county and you can find out how many people at S. D. Northway or Carter Nursing Home -- and I know you don't have those, but we do -- you can find out how many people are in those nursing homes. You don't get names and addresses -- names because of HIPAA. They won't permit that because they don't have the individual's permission to share names, but if you go in to S. D. Northway, you start talking to people and you say I saw where there are some people here in this nursing home that want to return to the community. Are you one of those people or do you know anybody who has expressed that wish to return to the community? Then you've got a great starting point, and it's free to you. >> CALLER: Okay. Can a family member request that information also? From an individual nursing home about, say, their family member? >> JUDY: They can only request information about their family member. There may be 10 or 12 people within that same nursing home, but usually if you gain access to a nursing home through working with one consumer, you'll find that other people will gravitate to you when you go and meet with that one person. >> CALLER: Okay. Thank you. 27 >> JUDY: You're welcome. >> OPERATOR: If there are any further questions at this time, please press 01 on your telephone keypad. The next question comes from Nora. >> CALLER: Hi. Okay, my question is that sometimes a resident doesn't have that much need for the 24 hour care. And the nursing home will say that the (indiscernible). We feel like that person isn't ready to go home. What can we do in that case? >> JUDY: You are entitled to an outside, second independent opinion. >> CALLER: Like doctors? >> JUDY: It could be a doctor. It could be a O.T./P.T. eval. >> CALLER: And did you have any good (indiscernible)? >> JUDY: I'm sorry, can you repeat that? >> CALLER: Did you have any (indiscernible) with the housing? >> JUDY: We do have contacts with the housing authority. Our waiting list, depending on the area of town or the county that we're working in, ranges anywhere from three weeks to almost two years. >> CALLER: Oh. I thought that was (indiscernible). But what is a good case that you have? What can you tell me or how can I create a good relation? >> JUDY: How can you create -- you have to cultivate those relationships. It helps if you can have one person, like I said, with our transition team members who will be your go-to person. If that person -- or if you can identify from one of your other contacts someone within the housing authority who has had a family member who was in a nursing home, that person may still be in or they may have deceased or they may have come 28 out, but if you can find a beginning point where you can relate to these individuals in an authoritarian position, who are the gatekeepers for transition. >> CALLER: I think that's enough. There is another question. >> TIM: I hate to interrupt, Judy. But we're almost out of time here, Judy, and we have a lot of content to get through. (inaudible). We may have one more brief Q&A session at the end. >> CALLER: I said there was another question. Did you hear? >> TIM: Yes, ma'am, I understand. If you could hold it for our next Q&A. >> JUDY: My E-mail address is bhamilc1@bellsouth.net. Give me an E-mail. We're on the assessment process now and we do have a lot of information left to cover in a very short time. >> CALLER: All right. >> JUDY: Okay, and we may just go ahead and skip forward to assessment, getting started. >> TIM: Slide (inaudible). >> JUDY: Yes. Becoming a facilitator requires a significant -- a significant commitment of time and energy. There are going to be times when you really take the job home with you, when you feel exhausted, that you don't think you have enough staff to do the job. You're following through on locating housing and developing those community supports, getting the utilities turned on -- the planning is crucial. The first step, of course, is that assessment that you've done and identifying what the needs and the concerns are, the initial interview, it may take more 29 than one appointment to get all of these things nailed down. With some people, because of their condition, may only be able to concentrate for 30 or 45 minutes or they may become easily fatigued after a period of time. Important guidelines for conducting your initial interview -- let the individual take the lead. It's crucial that they be the one who is guiding the process. Listen and assist the individual in expressing their desires if you have understood what they are trying to convey so that you make sure that you're clear. Much of your first visit will have to consist of just listening and looking and picking up on those cues. If someone has been in a facility for a long period of time, they may have a hard time expressing what their desires are because the facility has not asked them what their opinion was or what they wanted. Take time. It's important not to rush through it. You know, just spend as much time with that person as you think it's going to take to draw out their concerns and their needs about moving back to the community. Become acquainted with persons so that the two of you can work together, and it has to be a cooperative and working relationship between you and the consumer. Explain what you plan to do to them. Ask for their buy-in on it. Sometimes the person himself will want to conduct the assessment. They will want to ask the questions of the family members about what they can expect by way of support for them when they are moving back to the community. Explain to them about confidentiality. They don't have to share the purpose of your visit with anybody that they don't choose to. They certainly don't have to share it with the facility's staff and 30 that they have the right to have the nursing home facility staff participate in the planning process, that it's a good idea in a lot of cases to involve the facility staff, but that they don't have to. Informed consent is a person's agreement to allow something to happen. An informed consent also should involve making the transition consumer aware of the risks that are involved and the alternatives that are available to them. You need to remember that each interview will take a different amount of time and we spoke about HIPAA, the Health Insurance Portability and Accountability Act. As a transition facilitator, you need to make sure that you have that person's written permission to access information. The privacy rights must be guaranteed. The individual or the legal guardian has to have clear explanation of the personal -- how the personal information is going to be used, and you need to respect the individual's request to restrict that information and to only disclose it to certain people or to certain agencies. Understand and carefully follow the HIPAA regulations because it's the law. And you and the nursing home staff and other health agencies are responsible for ensuring that all information is obtained and shared only with the full, written agreement of the individual. By doing so, you always allow handling of all information in a confidential manner. You are modeling the key principle that we've already talked about of self-determination and that you are demonstrating' individual's right to control their personal information, that they may choose who that information is disclosed to. The successfull interviewing steps are the transition facilitator -- 31 it's necessary for skills to interview. You always have to be on time. Respect -- even though you think that this person is in a facility and not going anywhere, that they will always be there. Always, always respect their time. Don't overdress for the interview. Dress casually. Select a location where you can ensure the individual's privacy. Respect their personal space and their equipment and interview the person alone unless they invite somebody in to the session. Listen. Don't interrupt. Don't overpromise and keep the promises that you do make. Ask about community and social connections that the individual may have, and ask about the activities of the facility and understanding the favorite activities that they may be involved in and how do you establish a relationship with the nursing home. One of the first things is planning for the interview. At the nursing home, the best way to accomplish that is to involve the staff from the beginning. Let them know who you are. That you're not there to empty their nursing home, that you're only there to explore the possibility of this person transitioning and their desire to do that. Most nursing homes have family and friends and the importance is that they realize that it's important to work closely with you on behalf of the individual. Some family members may actually oppose the move back to the community, but those family members are going to be very few and far between I've found, and as long as you can build a program of supports and services in the community that will demonstrate to the family that you are taking their concerns into consideration and trying to develop a plan that covers all the eventualities, then most of the family members will come 32 around. And I realize that I've gone very quickly over a lot of information, but, Tim, I did want to save that last minute or two that we have for questions and answers if we have any more now. >> TIM: Thanks, Judy. Let's go ahead and do that. >> OPERATOR: If you have any questions at this time, please press 01 on your telephone keypad. The first question comes from Jerry. >> CALLER: I was wondering what if someone is in a nursing home for alcohol abuse or pharmaceutical drug use or overdosing, how do you handle those situations? >> JUDY: The facility is usually forced sobriety. So they may have a period of time where they have not used or abused drugs, but if that is the problem for which they were admitted, we may want to work with the consumer to get them set up in a program in an AA or other program on the outside and monitor. We do a 90-day follow up, post-transition. So continuing their sobriety once they are in the community is very important. Trying to head off relapse in any way that we possibly can. >> CALLER: What about drug abuse and overdosing? Is that the same situation? >> JUDY: It's essentially the same situation because they've been in an enforced abstinence program while they were in the nursing home and many times we find that they have not had counseling, so one of the first things we might want to start is counseling if they are allowed to go out of the nursing home for brief periods of time, their participation in a counseling program can still -- can begin while they are still a resident. 33 >> CALLER: Thank you so much. >> TIM: Okay, I apologize. We are at the time and we need to respect the schedule of our C.A.R.T. writer who has been going at very, very high speed for the last hour and a half and I do want to just make sure everyone on the line knows that both Judy and I remain available to answer your questions. So please, please, please, if you didn't get to ask any lingering questions, you can E-mail them directly to me, very simple E-mail, tim@ncil.org. And if I can answer your question, I will. And again, if it's content-related, I'll pass it along to Judy and we'll make sure to get back to you. I want to thank Judy for packing so much information into just 90 minutes and for all of her work preparing today's presentation and answering your questions and being with us. And of course I want to thank all of you for joining us today. I want to remind you one last time that if you please, please visit the web page on NCIL's website that we E-mailed in your confirmation letter and fill out the evaluation form, we'd appreciate it. Judy, if you'd hold the line, I'd appreciate it. Otherwise, thanks everyone and we'll talk to you soon. Bye-bye.